========================================================================= Date: Tue, 2 Sep 1997 12:21:13 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Back but OVERWHLEMED! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to everyone!
Sometimes it doesn't pay to go on vacation. We had a great but exhausting time in Massachusetts and came home pooped! I decided to take the girls to Lake Tahoe to relax a bit before they started in a new school on August 27th.
I have received close to 200 e-mail messages to go through in the last month. I am also having trouble receiving several messages from my server after August 20th (I am currently in hold waiting to talk to someone - it's been 20 minutes so far).
Add to all of this a ton of mail, so I ask for everyone's forgiveness for not responding to messages sooner and bear with me as I sort through the heap, hah!!
Christine Clark Apert Support & Information Network ========================================================================= Date: Tue, 2 Sep 1997 17:28:02 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: aperts in scottland MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Does anyone know any aperts in Scottland, London, & in the area? My husband is going to Scottland this week and we would like to get in touch with them if possible. Thanks, and God Bless everyone!
Denise Graham ========================================================================= Date: Tue, 2 Sep 1997 16:51:23 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonro@CADVISION.COM> Subject: Info about aperts-Scotland MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I did some exploring and found an organization called "Let's Face It" in the U.K.
Perhaps they could direct you further.
Their address is WWW.personal.u-net.com/~lfi/
Good luck. ========================================================================= Date: Tue, 2 Sep 1997 21:45:49 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: aperts in scottland MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Thanks for all of your help. I have written to Steve Moody, and I am looking into Let's Face It. Hope everyone is doing O.K.
Denise Graham ========================================================================= Date: Wed, 3 Sep 1997 07:14:59 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: Hearing Loss In Children (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
> http://www.bcm.tmc.edu/oto/grand/31193.html > > > > CONSIDERATIONS IN THE EVALUATION OF THE HEARING IMPAIRED CHILD > > Judith J. Owens, MD > > March 11, 1993 > > > > Approximately 5,000 children are born every year in the United States > > who will be found to have a significant hearing impairment. The > > hearing loss may be secondary to congenital or postnatally acquired > > conditions. Congenital hearing loss is attributed to a defect that the > > child is born with, either an inherited genetic defect or the result > > of a prenatally acquired condition. The important non-hereditary > > causes of congenital hearing loss include drug exposure, prenatal > > infections (TORCH) and erythroblastosis fetalis. > > > > Three-quarters of childhood hearing impairment is postnatally > > acquired. Infections, drugs, hyperbilirubinemia, noise exposure, and > > trauma have all been implicated in contributing to postnatally > > acquired hearing loss. In addition to meningitis and sepsis, the > > important infectious diseases associated with postnatally acquired > > hearing loss include adenovirus, mumps, chicken pox, hepatitis, EBV, > > and influenza. Hyperbilirubinemia when greater than 20 mg % will > > result in damage to the cochlear nucleus. > > > > Although most hereditary disorders appear to follow the rules of > > Mendelian inheritance, marked variability of gene expression and > > incomplete penetrance may confound the diagnosis and clinical > > recognition of many of these disorders. A complete family history is > > essential to uncover these types of hearing loss. This is especially > > true for nonsyndromic inherited hearing loss. The hearing loss may be > > present at birth or may develop later in life. All forms of > > inheritance, autosomal dominant, autosomal recessive, and X-linked, > > have been documented in families with nonsyndromal hereditary hearing > > impairment (HHI). > > > > Hearing loss is a component of over 200 inherited syndromes. Many > > syndromes in which hearing loss is a significant component were > > reviewed for this presentation. The major features of some of these > > syndromes will be reviewed in this abstract. > > > > For convenience these syndromes can be categorized by the association > > with other morphologic abnormalities. Important syndromes where > > deafness is associated with craniofacial abnormalities include > > Treacher-Collins, Goldenhar's, Crouzon's, and Apert's syndromes. All > > except Goldenhar's (AR) are inherited in an autosomal dominant > > fashion. Hearing loss in these syndromes is mixed or conductive and > > may be surgically correctable. > > > > Hearing loss in association with visual loss is a particularly > > devastating combination. There are four important syndromes with this > > combination: Usher's, Alstrom's, Cockayne's and Refsum's disease. All > > are inherited in an autosomal recessive fashion. Retinitis pigmentosa > > is associated with all except for Cockayne's syndrome. There are four > > types of Usher's syndrome. Type I is the most severe and is associated > > with vestibular dysfunction > > > > Apert's syndrome consists of progressive renal insufficiency, > > progressive sensorineural hearing loss and various ocular > > abnormalities. This syndrome demonstrates X-linked dominant > > inheritance: males are more severely affected and females may have a > > variable course to their disease because of random X chromosome > > inactivation. > > > > Jervell and Lange-Nielsen syndrome is the most common syndrome with > > cardiac dysfunction and hearing loss. There is a conduction defect > > resulting in a prolonged QT interval on electrocardiogram, and > > clinically with fainting spells or sudden death. Jervell and > > Lange-Nielsen is inherited in an autosomal recessive manner. > > > > Pendred's syndrome is the most frequently occurring example of > > associated deafness and endocrine dysfunction. This disorder results > > from an error in thyroxin metabolism. A goiter may be clinically > > palpable and profound sensorineural hearing loss is usually present. > > > > Dermal abnormalities and deafness characterize Waardenburg's syndrome > > and the LEOPARD syndrome. Clinical features of Waardenburg's include > > dystopia canthorum, deafness, a high broad nasal root, synophrys, > > heterochromia irides, and early graying. There are two types of this > > syndrome characterized by the presence or absence of dystopia > > canthorum. When dystopia canthorum is absent, but the other features > > of the syndrome are present, there is a higher incidence of deafness. > > > > Metabolic syndromes, especially the mucopolysaccharidoses, are > > frequently associated with conductive or mixed hearing loss. > > Chromosomal abnormalities, specifically trisomy 13 and 18 are often > > associated with deafness. Because these conditions are lethal in early > > infancy the deafness is of relatively minor significance. Down's > > syndrome is often associated with a mixed hearing loss. > > > > Early identification of hearing loss is desirable to optimize > > rehabilitation. Identification of hearing loss in young children is > > facilitated by a clinician who looks carefully for a family history of > > early hearing loss, and who is attuned to the many syndromes > > associated with hearing impairment. Complete otologic and auditory > > evaluation of these children is essential. > > > > Case Presentation > > > > An eight-month-old child presented to Texas Children's Hospital for an > > otologic evaluation. The child was born full term via an uncomplicated > > vaginal delivery. There was no history of infections, drug or alcohol > > use during the pregnancy. Both parents are hearing- impaired. The > > mother reported the etiology of her deafness as "tonsillitis" and the > > etiology of her husband's hearing loss as "high fever." On physical > > examination the child demonstrated multiple stigmata of Waardenburg > > syndrome including dystopia cantorum, heterochromia irides, a broad > > nasal root, and synophrys or confluence of the eyebrows. The mother > > has similar features and in addition has a white forelock that is also > > associated with this syndrome. > > > > Audiologic evaluation revealed no responses to speech, warble tones, > > or narrow band noise in the sound room. Auditory brainstem response > > audiometry showed no response to air or bone conducted clicks at > > equipment levels in either ear. In light of her significant > > sensitivity loss she was referred for hearing aid evaluation. > > > > Despite the fact that both parents are hearing-impaired and > > communicate through signing, they were anxious to have the child > > fitted with hearing aids. The parents were referred for genetic > > counselling to provide them with a better understanding of the full > > implications of this disease. > > > > Bibliography > > > > Considerations in the Evaluation of the Hearing-Impaired Child ========================================================================= Date: Wed, 3 Sep 1997 13:19:25 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann Hicks <Gaylann950@AOL.COM> Subject: New subscriber
My name is Gaylann Hicks and have a grandson, Blake Scofield, born April 15, 1994 with crouzons. Blake has had three cranial surgeries, cornea surgery and a shunt. My daughter Sonya and her husband, Bill, are taking Blake to Dallas for an evaluation Sept. 6th. they have also gone to Univ. Of Virginia and the group in Chattanooga. We are interested in any info on clinics in the southeast. Although Blake has had all his surgeries here in Memphis, we have researched our options and feel we need a team. Sonya is organizing an "About Face" support group here and she and I attended their conference in New Orleans. This was a great support and now finding this list service is really exciting. I don't have a computer with internet and am imposing on a friend. Therefore, it may take me a while to respond. Thanks for all you help!! ========================================================================= Date: Wed, 3 Sep 1997 13:48:33 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Re: New subscriber MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Dear Gaylann,
Our daughter Ceci's plastic surgery group has a web page describing the clinic she is involved with:
http://www2.centerplasticsurgery.com/cps/Pediatric/pediatricoverview.htm l
I know that Fairfax, VA is quite far from Memphis, but I think the page is still useful for describing what types of doctors should be involved in a clinic of this sort.
>---------- >From: Gaylann950@AOL.COM[SMTP:Gaylann950@AOL.COM] >Sent: Wednesday, September 03, 1997 1:19 PM >To: APERT@LISTSERV.AOL.COM >Subject: New subscriber > >My name is Gaylann Hicks and have a grandson, Blake Scofield, born April 15, >1994 with crouzons. Blake has had three cranial surgeries, cornea surgery >and a shunt. My daughter Sonya and her husband, Bill, are taking Blake to >Dallas for an evaluation Sept. 6th. they have also gone to Univ. Of Virginia >and the group in Chattanooga. > We are interested in any info on clinics in the southeast. Although >Blake >has had all his surgeries here in Memphis, we have researched our options and >feel we need a team. Sonya is organizing an "About Face" support group here >and she and I attended their conference in New Orleans. This was a great >support and now finding this list service is really exciting. > I don't have a computer with internet and am imposing on a friend. > Therefore, it may take me a while to respond. > Thanks for all you >help!! > ========================================================================= Date: Wed, 3 Sep 1997 13:56:02 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Re: New subscriber MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
I just tried the link I gave for Gaylann and it didn't work.
Try http://www.centerplasticsurgery.com and click on the pediatric link
>---------- >From: Gaylann950@AOL.COM[SMTP:Gaylann950@AOL.COM] >Sent: Wednesday, September 03, 1997 1:19 PM >To: APERT@LISTSERV.AOL.COM >Subject: New subscriber > >My name is Gaylann Hicks and have a grandson, Blake Scofield, born April 15, >1994 with crouzons. Blake has had three cranial surgeries, cornea surgery >and a shunt. My daughter Sonya and her husband, Bill, are taking Blake to >Dallas for an evaluation Sept. 6th. they have also gone to Univ. Of Virginia >and the group in Chattanooga. > We are interested in any info on clinics in the southeast. Although >Blake >has had all his surgeries here in Memphis, we have researched our options and >feel we need a team. Sonya is organizing an "About Face" support group here >and she and I attended their conference in New Orleans. This was a great >support and now finding this list service is really exciting. > I don't have a computer with internet and am imposing on a friend. > Therefore, it may take me a while to respond. > Thanks for all you >help!! > ========================================================================= Date: Wed, 3 Sep 1997 10:57:04 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: New subscriber (Gaylann) In-Reply-To: <970903131526_-700900301@emout09.mail.aol.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi Gaylann!
I am also a listmember of this wonderful Apert List too. Here are the list of craniofacial clinics in Texas you inquired about:
Craniofacial Deformities Clinic Baylor University Medical Center Sammons Towers, Suite 400 3409 Worth Street Dallas, TX. 75246
FAX # (214) 828-1714 --------------------------
Texas Cleft Palate/Craniofacial Deformity Team Craniofacial Deformity Clinic 5416 John Freeman Ave, Suite 2059 Houston, TX. 77030-3402
FAX # (713) 794-5048 PHONE # (713) 794-1589 -------------------------- Craniofacial Team Medical Univ of South Carolina 171 Ashley Avenue Clinical Science, Room 100 Charleston, SC. 29425
FAX # (803) 792-0546 --------------------------
South Carolina Center for Cleft Palate/Craniofacial Disorders Craniofacial Disorders Clinic Two Medical Park, Suite 300 Columbia, SC. 29203
FAX # (803) 424-7349 --------------------------
Hope this helped.
Hugs, Penny :-)
On Wed, 3 Sep 1997, Gaylann Hicks wrote:
> My name is Gaylann Hicks and have a grandson, Blake Scofield, born April 15, > 1994 with crouzons. Blake has had three cranial surgeries, cornea surgery > and a shunt. My daughter Sonya and her husband, Bill, are taking Blake to > Dallas for an evaluation Sept. 6th. they have also gone to Univ. Of Virginia > and the group in Chattanooga. > We are interested in any info on clinics in the southeast. Although Blake > has had all his surgeries here in Memphis, we have researched our options and > feel we need a team. Sonya is organizing an "About Face" support group here > and she and I attended their conference in New Orleans. This was a great > support and now finding this list service is really exciting. > I don't have a computer with internet and am imposing on a friend. > Therefore, it may take me a while to respond. > Thanks for all you help!! > ========================================================================= Date: Thu, 4 Sep 1997 08:38:33 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim Younkin <jim@PHILLYDINE.COM> Subject: General stuff MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi everyone! Welcome to the newest member of the list! It's a wonderful resource and we're all fortunate to have it! Everything's been pretty quiet lately, maybe everyone's getting into the back-to-school routine! I know that's what WE'VE been doing anyway. Sara's scheduled to have hand surgery to separate her left ring finger on Sept 19th. Hopefully we'll be able to do it as an outpatient procedure--it'll be our first surgery that hasn't required at least a 2 night stay--hey, it's a tiny milestone but we'll take it! Does anyone have any news on BJ? We haven't been able to stop thinking of the Harmons and the nightmare this must be for them. Well, I should go. The little dudes are getting restless here. Have a great day! Take care, Kelly Younkin (and the rest of the family, too) ========================================================================= Date: Thu, 4 Sep 1997 10:15:46 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "A. Montgomery" <roalm@NETCITY.CA> Subject: Introduction Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello everyone,
My name is Rose and my 5 year old son Joshua has goldenhar's syndrome. Yesterday was his first day of kindergarten and I am revelling in all this free time. (my house is of course, still a mess). Josh was born with R-sided facial anomolies including extensive cl&p extending into his R orbit. He wears a prosthetic eye. There were also minor defects on his R ear. His vision and hearing are both impaired.
We are looking forward to sharing with you.
Take care, Rose Saint John, NB Canada ========================================================================= Date: Thu, 4 Sep 1997 11:39:09 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Introduction MIME-Version: 1.0 Content-Type: text/plain
Welcome to the listserv, Rose and Joshua! Things are kind of quiet right now - but we have our moments! You may want to download and check out the archived listserv mail from the web page for the month of August to get a feel for what we've been up to. Again, welcome - we're glad to have you here!
--Don Sears
> ---------- > From: A. Montgomery > Sent: Thursday, September 04, 1997 9:15 AM > To: APERT@LISTSERV.AOL.COM > Subject: Introduction > > Hello everyone, > > My name is Rose and my 5 year old son Joshua has goldenhar's syndrome. > Yesterday was his first day of kindergarten and I am revelling in all > this free time. (my house is of course, still a mess). > Josh was born with R-sided facial anomolies including extensive cl&p > extending > into his R orbit. He wears a prosthetic eye. There were also minor > defects > on his R ear. His vision and hearing are both impaired. > > We are looking forward to sharing with you. > > Take care, > Rose > Saint John, NB > Canada > ========================================================================= Date: Fri, 5 Sep 1997 11:52:28 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dori Jefferson <dorij@SIUF02.SIUFDN.SIU.EDU> Subject: Greetings Mime-Version: 1.0 Content-Type: text/plain
Greetings from Southern Illinois. We are the Jeffersons and our son, Seth, has Apert Syndrome. Seth is 6 years old and is in the 1st grade. He loves to learn and makes friends easily. I look forward to hearing from my new friends across the country. Peace, Dori J. ========================================================================= Date: Fri, 5 Sep 1997 15:07:00 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim Younkin <jim@PHILLYDINE.COM> Subject: Re: Greetings MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Dori, Welcome to the list! We are Jim and Kelly Younkin. Our daughter Sara has Aperts and she is 17 months old. She loves to play with her older brother Jordan(7) and sister Katie(4). She is scheduled for her 2nd hand surgery in 2 weeks (something I'm sure you and Seth are all too familiar with!) It's always great to hear from new families. Welcome again. Take care. The Younkins ========================================================================= Date: Fri, 5 Sep 1997 12:15:39 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Greetings MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dori,
Glad to see you on the list. Welcome!! How did you like your letter and Seth's picture on the front page of my last newsletter? He looks great!
Best wishes to the whole family.
Christine
Dori Jefferson wrote: > > Greetings from Southern Illinois. We are the Jeffersons and our son, Seth, has Apert Syndrome. Seth is 6 years old and is in the 1st grade. He loves to lear > Peace, Dori J. ========================================================================= Date: Fri, 5 Sep 1997 12:44:27 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Plum update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Robyn,
This is probably old news by now but I am attempting to get caught up from all these e-mail messages I have and I wanted to give my 2 cents about "Night Frights".
Michelle had a terrible time with them and sure enough I believe they were caused by two of the things you mentioned. The lack of oxygen for one. She did better after we had her on oxygen at night. The other problem was surgeries. She was so traumatized from the mask during anesthesia that she would scream even if I put her shirt on over her head. She would gasp for air and arch back when it went over her head. After I demanded that she get pre-meds before any surgeries she did MUCH better. With the pre-meds like Versed and Ketamine, the children do not remember anything after being in your arms in the pre-op area even though they are still awake (and sometimes a bit goofy). I will make them hold up surgery if she hasn't had pre-meds or it hasn't taken effect yet just so it is easier on her!
These meds taste TERRIBLE though and the secret is to get them down in one swallow because as soon as they get a taste they develop a locked jaw. No amount of reasoning gets it down without a struggle. I always have the nurse give it to me in a syringe (without the needle, of course) and then I come around from behind and stick it in the side of her mouth and squirt. Then hold the mouth shut and her head back a bit until she swallows (or you get it right back at ya, hah!) When they are babies you can blow in their face and they will automatically swallow but not when they get older (and wiser).
Another tip, Michelle will occasionally have "Night Frights" now if she is covered with too many blankets at night. She likes to get buried but after she falls asleep I take a layer or two off. Since they may sweat more than the typical person they also overheat which causes her to wake up screaming and drenched in sweat.
Hope the Plum is doing better by now!
My best,
Christine
Robyn Johnston wrote: > > Hi all, this list has seemed quiet lately, here is an update on what Brenna > and I have been up to. Hope to hear from some of you too. Tose of you who > are going to the convention, have FUN!! and learn lots - please share any > good stuff if you can when you get back. > > An update on the Plum. (minor venting ;-))... > > We went to Portland today for Craniofacial Consultations. Let me back > up... I kinda raised hell in Eugene a couple of weeks ago (not towards > anyone in particular, just about the system), venting my frustrations for > the lack of answers and direction from the "specialists" here. They > admitted that they have never dealt with Crouzons before and were not sure > of the proper care/following. They said the type of baby's they normally > see get a cranfacial team overview at 3 years of age. They assumed we > would do that too. That is when I lost it. I said, she has already been > through 3 surgeries with 2 more possibly within the next year. I have > questions that are not being answered and we need some answers now. Not in > 3 years. WEll, anyways, we were refferred up to Portland for an Appt with > the CranioFacial team up there. Well, the team is not really together yet > up there. Just the few surgeons and a few CF directors adn staff whom we > had never met before. Anyways we talked to the CF director and head nurse > practitioner today. They agreed that Brenna should go to Seattle to get a > complete Craniofacial team sitting, medical planning for the future, and > just some plain answers from a complete "team". I am estatic. My > insurance would not let us go out of state unless we had that referral. It > looks like we took another giant step in the right direction. The people > were actually very nice to work with today and couldn't believe that we had > "slipped" through the cracks. They were stunned that nobody told us about > their program upon the initial diagnosis. We should have been followed by > the CF people from early on. Anyways I think they felt pretty bad because > they bent over backwards to make us very happy today. > > We also had a follow up appt with the ENT and a hearing and speech test. > Brenna's hearing is back in the normal range after the insertion of her PT > tubes - yeah!!! Her speech is a little slow, but she is making the right > progressions. Her latest word is WOWOWOWOWOW. it is so cute. She charmed > all of the nurses and speech pathologists today. She is such a flirt and a > giggle monster. She would kind of half scoot/half crawl down the halls, > (crawling with a skirt on can be challenging :-)) giggling and singing - > getting all of the nurses to come out of their stations. She would then > flirt like you wouldn't believe. Giggleing and ledadedaleda - of course > they weren't encouraging her at all. :-) She is such a social, little, > busy body. So much energy and happiness for all she has been through. I > can't believe she will still let people in white coats close to her. > > We then went to the ENT to check on her PT tubes and Stents. He was > thrilled to hear about her hearing improvement but, dissapointed in the > lack of improvement in her airway and the stents. I told him of Brenna's
> routine screaming spells during the night and he wants to put her on Oxygen > now. He says that since she now has the stents - an open passage, they can > use a small tube under her nose instead of a mask at night. I looked at > him with doubt that she will leave it on her face but said we will try. He > called these screaming spells, "Night Frights". I was wondering if they > were nightmares. We determines them to be a combination of > physical/behavioral causes. Probably needing more Oxygen when she sleeps > scares her and wakes her up. Also, possibly the surgeries themself or the > daily suctioning that we have to do could all be causeing them to happen. > Has anyone else had to deal with these? I am not sure what to do. > Sometimes Brenna wakes up 8-10 times a night. She has only slept 3 nights > since the surgery without these night frights. I am getting pretty > exhausted. > > So anyways, i have decided to take a leave of absence from work to take > care of her. I am going insane trying to keep my chin up at work and deal > with all of the medical issues. All of the medical stuff is a full time > job!!! At least we are making progress though. I will be gone from work > for 1 year and then will see if we can afford to continue having me at home > or, if I need to go back. We are also putting our house on the market and > trying to buy some country property. We wan't to raise our kids on a > little bit of acreage if we can afford it. - one reason I am not quitting > my job YET. > > Well, take care all, Off to la la land, (Please let Brenna sleep through > the night). SSSNNNNNZZZZZZzzzzzz...... Robyn ========================================================================= Date: Fri, 5 Sep 1997 16:10:51 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <CAMOUS@CHATHAM.EDU> Subject: Re: Plum update
I agree with the need for pre-op meds!! In our limited, anecdotal study (ie I don't give a hang what the medical literature says, this is our experience!!) Evan has done much better with pre-op versed! Without it he has been WILD in the recovery room, requiring more meds there, and more pain meds. one anesthesiologist said that there is a phenomena called "reentry psychosis" (sounds like pathology for the Mir astronauts!) which is avoided with the use of pre-meds. one other note- the book, Pediatric Plastic Surgery by Bentz which I mentioned, isn't in the bookstores yet. I realized that it has a copyright date of 1998 and then the editor (Evan's hand surgeon) wondered how I got a copy as the contributors haven't gotten copies yet. OOPS!! Keep it in mind for the future!
Marianne ========================================================================= Date: Fri, 5 Sep 1997 13:12:17 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Greetings MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chris,
Glad to see you on the list. Sorry you didn't hear about my get together in Massachusets in enough time to go but I will have another one when we return for another vacation. My husband's family all live there. Most are in the Berkshires, in Pittsfield, and his brother in Agawam.
Hope you will sign up for the newsletters and networking list. As a matter of fact, I just had a call today from a mother with a six month old with Apert Syndrome. She lives in Virginia Beach (they just moved there two weeks ago from California). She is feeling quite overwhelmed and could use some help finding a good craniofacial team in Virginia. I passed on the information you relayed earlier about the Center for Facial Rehabilitation at Fairfax Hospital. She also needs help with finding out what services are available in Virginia to help her. Her daughter has a trach and has now developed hydrocephalus and needs a shunt placed. Would you be interested in contacting her? You can respond with your adddress, etc., privately at my e-mail address above or call me at (916) 961-1092.
All my best,
Christine Clark
Christopher Kilner wrote: > > Greetings, > > My name is Chris Kilner and I just recently discovered Teeter's Page and > this listserver. My wife, Reggie, and I have a 2 1/2 y.o.(32 mo.) > daughter named Cecile (we call her Ceci) who was born with Apert's and a > 17 month old son, Blair. > > When I subscribed to the listserver, I tried to read all of the archives > to get up to speed, but quickly gave up and only read the July '97 > postings. > > To Coleen Jones, I want to say congratulations on your pregnancy! Ceci > and Blair are 15 months apart and are the best of playmates. Reggie > didn't do any testing when she was pregnant with Ceci, but with Blair > she did an amnio and a high resolution ultrasound so we could be > prepared. At that point they had only just discovered the gene > responsible for Apert's and testing for it took 15 months, but even if > we could have tested for it, we wouldn't have done anything different, > so what's the point? Socially, having a little brother has been the > best thing for Ceci - she is as confident and outgoing as any of her 32 > cousins (who have also been great for her socially). > > For Ceci's hand surgeries, she had bandages for 2-3 weeks, depending on > how well the skin grafts were healing. They would send her home with > those awful, armlength plastic sleeves called "No-No"s in order to keep > her from putting her bandages in her mouth, but since Ceci used a > pacifier, we would take the No-Nos off so she could pick up her pacifier > if it fell out. > > As for teeth, Ceci got her first at 13 months (compared to 9.5 for her > brother) and now has a mouthful of teeth (8 up top, 10 below) and eats > anything she wants (she loves corn on the cob). > > Now, a little about Ceci. She is a bright, beautiful (her facial > surgeon gave her cheek implants in preparation for bone distraction), > creative, chatty little blue-eyed blond. She loves Barney, Arthur (the > aardvark), kittens, puzzles, drawing, and stringing beads. Her Apert's > is mild in that she didn't have a cleft palette or airway problems or > hydrocephalus problems requiring a shunt or noticeably limited shoulder > movement. She has been incredibly healthy with only 1 ear infection (at > 16 months!) and two colds (none the first year!). She is dextrocardial > (heart on the right side) and had an atrial septal defect (hole in her > heart) which closed on its own. Her hands, however, were severe (like > Chad Graham's?), but her talented surgeon gave her all ten fingers. Her > toes are, in her grandma's words, "baby doll toes" and at the moment, > they have red nail polish on them "just like mommy." Her doctors have > recommended not separating the toes because they would only spread and > cause difficulty with fitting shoes (although she has had 1 nail bed > removed to prevent infections). > > All of her surgery has been done by the Craniofacial team at Fairfax > Hospital in Northern Virginia (considered as good as Children's Hospital > 15 miles up the road and Johns Hopkins 50 miles up the road). > > She had her cranial operation and thumbs separated at 6 months, her > index and pinkie fingers separated at 12 months and her cheek > implants/temple molding and final finger separation at 18 months. As far > as using her thumbs after they were separated, she grabbed a q-tip away > from the plastic surgeon the first time he unwrapped the bandages. > > To Marianne, Dave, and little Evan: It's nice to find someone in the > mid-Atlantic. Although we live in Northern Virginia (Alexandria), I > grew up in Maryland and Reggie grew up in Ohio, so Pittsburgh feels like > "next door". Maybe we can visit on our next trip to Cleveland. > > To the Massachusetts crowd: I wish I had discovered you guys sooner. We > usually spend a few weeks this time of year in the Berkshires at my > sister-in-law's, but this year we rented a place in the Outer Banks. > > P.S. Happy Belated Birthday to Jacob and Evan. ========================================================================= Date: Fri, 5 Sep 1997 13:21:30 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: I WAS BORN WITH APERT SYNDROME MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Andrea,
Glad to meet you! Please, by all means, join up for my networking list. There are plenty of adults with Apert that you can correspond with. There are even more that haven't signed up yet but are on my mailing list if you want to appeal for a pen pal.
All my best to you,
Christine Clark
Andrea Gartner wrote: > > Hi :>) My name is Andrea Gartner. I am a 19 year-old who was born with > Apert Syndrome. > > I have had several surgeries throughout my life. It seems surgery is my > middle name! At seven weeks, I had a craniofacial surgery done. The purpose > for this was to allow my brain to grow normally because the soft spot on my > skull was closed at birth. I had two finger separation surgeries, one at six > months, and another at nine months. I had a finger and toe separation > surgery at 14 months, and another at 19 months. I am greatful for these > surgeries. Although my I have limitations in my hands, I am amazed at what > they can do. I encourage this surgery. When I was nine years old, I had a > left foot, toe separation surgery. The results of these surgeries were > interesting. It helped my walking on my left foot, but on my right foot it > didnt't. At 15, I had another right foot toe separation. I have also had > teeth extracted. However, the big problem throughout my life has been my > ears. I have had persistant ear infections. To improve my hearing, I wear a > hearing aid while attending classess. I also wear braces. I'm finally > getting used to them. At least I'll have a nicer smile. > > According to my wonderful mother, her pregnancy was quite normal. I came out > weighing 6 pounds and 11 ounces, and only 19 1/2 inches long! I have a very > loving and supporting older brother and father as well, and a cat named Bear. > I am the only one in my entire family who was born with Apert. > > I am currently in my final half of my freshman year in college. The first > semester was a little tough for me. I'm planning to major in print > journalism - investigative reporting, since I have a strong love for writing > and researching. > When I'm not studying, I enjoy writing short stories and poems, taking > ceramics courses, reading about the media, taking walks along the beach, and > researching Aperts. I also volunteer at the library. > > I find growing up with Apert Syndrome to be quite challenging. It is much > harder for me to get a job. find loyal friends, and be accepted. Throughout > my childhood, and still today, I get my share of giggles, pointed at, stared > at and rude comments. For every stare or comment I get, I often feel > humiliated, but I tell myself that I am quite comfortable with the way I > look, and noone can tell me different. I find it so frustrating that we live > in a society that judges people by their looks and appearances before > anything else. At the time, I am quite comfortable with my facial appearance > and the way I look. I do not plan to have any severe craniofacial surgery > done in the future. I feel it wouldn't change the person I am on the inside, > just leave me with scars on the outside. > > I presently live in Cape Coral, Florida, and have lived here for the past > three years. I'm orginally from Illinois. Northbrook to be exact. I was > amazed to find that there were so many others from all over the world, who > were also born with Apert. At times, I felt that I was the only one who was. > It is a big relief to know that there are others out there. Teeter's Page > provided great help and encouragement for me. (Way to go Cat and Dan!) > > If you have any questions, please ask. I would really love to hear from > anyone with Apert's young or old. Have a great day and keep smiling! > > Best Wishes, > > Andrea Gartner > LUVS2WRTE@AOL.COM ========================================================================= Date: Fri, 5 Sep 1997 13:43:49 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Plum update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Christine, your timeing is perfect. Brenna is going in for a minor surgery to remove her nasal stents next Wed. With Larks suggestion, I asked if I could possibly hold her until she is put under anesthesia. The nurse said probably not but, there were some pre-meds they could give her. I hopefully will be discussing this issue further with the anesthesiologist (pardon my spelling??) hopefully Monday. I just hate to think about her not being sedated before strangers in masks take her away and prepare her for surgery. I am wondering if this might be part of the reason she has these night frights. We are still trying to find a way to improve her airway. The stents were worthless this time. A lot of frusterating maintenance for no results. They were so successful the first time I was hoping they would be again. She will not wear the O2 tubes under her nose at night. I had a feeling she would pull them off. ;-/ We have tried several times with no success. She will be doing another sleep study at the end of the month and then possibley an O2 tent at night. If this doesn't help, the Dr. wants to do a trach. Anyways, thanks again for the information about Michelle. Every little tip helps. Robyn & the Plum
At 12:44 PM 9/5/97 -0700, you wrote: >Robyn, > >This is probably old news by now but I am attempting to get caught up >from all these e-mail messages I have and I wanted to give my 2 cents >about "Night Frights". > >Michelle had a terrible time with them and sure enough I believe they >were caused by two of the things you mentioned. The lack of oxygen for >one. She did better after we had her on oxygen at night. The other >problem was surgeries. She was so traumatized from the mask during >anesthesia that she would scream even if I put her shirt on over her >head. She would gasp for air and arch back when it went over her head. >After I demanded that she get pre-meds before any surgeries she did MUCH >better. With the pre-meds like Versed and Ketamine, the children do not >remember anything after being in your arms in the pre-op area even though >they are still awake (and sometimes a bit goofy). I will make them hold >up surgery if she hasn't had pre-meds or it hasn't taken effect yet just >so it is easier on her! > >These meds taste TERRIBLE though and the secret is to get them down in >one swallow because as soon as they get a taste they develop a locked >jaw. No amount of reasoning gets it down without a struggle. I always >have the nurse give it to me in a syringe (without the needle, of course) >and then I come around from behind and stick it in the side of her mouth >and squirt. Then hold the mouth shut and her head back a bit until she >swallows (or you get it right back at ya, hah!) When they are babies you >can blow in their face and they will automatically swallow but not when >they get older (and wiser). > >Another tip, Michelle will occasionally have "Night Frights" now if she >is covered with too many blankets at night. She likes to get buried but >after she falls asleep I take a layer or two off. Since they may sweat >more than the typical person they also overheat which causes her to wake >up screaming and drenched in sweat. > >Hope the Plum is doing better by now! > >My best, > >Christine > >Robyn Johnston wrote: >> >> Hi all, this list has seemed quiet lately, here is an update on what Brenna >> and I have been up to. Hope to hear from some of you too. Tose of you who >> are going to the convention, have FUN!! and learn lots - please share any >> good stuff if you can when you get back. >> >> An update on the Plum. (minor venting ;-))... >> >> We went to Portland today for Craniofacial Consultations. Let me back >> up... I kinda raised hell in Eugene a couple of weeks ago (not towards >> anyone in particular, just about the system), venting my frustrations for >> the lack of answers and direction from the "specialists" here. They >> admitted that they have never dealt with Crouzons before and were not sure >> of the proper care/following. They said the type of baby's they normally >> see get a cranfacial team overview at 3 years of age. They assumed we >> would do that too. That is when I lost it. I said, she has already been >> through 3 surgeries with 2 more possibly within the next year. I have >> questions that are not being answered and we need some answers now. Not in >> 3 years. WEll, anyways, we were refferred up to Portland for an Appt with >> the CranioFacial team up there. Well, the team is not really together yet >> up there. Just the few surgeons and a few CF directors adn staff whom we >> had never met before. Anyways we talked to the CF director and head nurse >> practitioner today. They agreed that Brenna should go to Seattle to get a >> complete Craniofacial team sitting, medical planning for the future, and >> just some plain answers from a complete "team". I am estatic. My >> insurance would not let us go out of state unless we had that referral. It >> looks like we took another giant step in the right direction. The people >> were actually very nice to work with today and couldn't believe that we had >> "slipped" through the cracks. They were stunned that nobody told us about >> their program upon the initial diagnosis. We should have been followed by >> the CF people from early on. Anyways I think they felt pretty bad because >> they bent over backwards to make us very happy today. >> >> We also had a follow up appt with the ENT and a hearing and speech test. >> Brenna's hearing is back in the normal range after the insertion of her PT >> tubes - yeah!!! Her speech is a little slow, but she is making the right >> progressions. Her latest word is WOWOWOWOWOW. it is so cute. She charmed >> all of the nurses and speech pathologists today. She is such a flirt and a >> giggle monster. She would kind of half scoot/half crawl down the halls, >> (crawling with a skirt on can be challenging :-)) giggling and singing - >> getting all of the nurses to come out of their stations. She would then >> flirt like you wouldn't believe. Giggleing and ledadedaleda - of course >> they weren't encouraging her at all. :-) She is such a social, little, >> busy body. So much energy and happiness for all she has been through. I >> can't believe she will still let people in white coats close to her. >> >> We then went to the ENT to check on her PT tubes and Stents. He was >> thrilled to hear about her hearing improvement but, dissapointed in the >> lack of improvement in her airway and the stents. I told him of Brenna's >> routine screaming spells during the night and he wants to put her on Oxygen >> now. He says that since she now has the stents - an open passage, they can >> use a small tube under her nose instead of a mask at night. I looked at >> him with doubt that she will leave it on her face but said we will try. He >> called these screaming spells, "Night Frights". I was wondering if they >> were nightmares. We determines them to be a combination of >> physical/behavioral causes. Probably needing more Oxygen when she sleeps >> scares her and wakes her up. Also, possibly the surgeries themself or the >> daily suctioning that we have to do could all be causeing them to happen. >> Has anyone else had to deal with these? I am not sure what to do. >> Sometimes Brenna wakes up 8-10 times a night. She has only slept 3 nights >> since the surgery without these night frights. I am getting pretty >> exhausted. >> >> So anyways, i have decided to take a leave of absence from work to take >> care of her. I am going insane trying to keep my chin up at work and deal >> with all of the medical issues. All of the medical stuff is a full time >> job!!! At least we are making progress though. I will be gone from work >> for 1 year and then will see if we can afford to continue having me at home >> or, if I need to go back. We are also putting our house on the market and >> trying to buy some country property. We wan't to raise our kids on a >> little bit of acreage if we can afford it. - one reason I am not quitting >> my job YET. >> >> Well, take care all, Off to la la land, (Please let Brenna sleep through >> the night). SSSNNNNNZZZZZZzzzzzz...... Robyn > ========================================================================= Date: Fri, 5 Sep 1997 15:48:51 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <kbranstetter@DELPHI.COM> Subject: Update - Surgery on Monday, Sept. 8th MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Hi, I wanted to give you a quick update on me... I've been busy. I travelled some in August. I went to Wide Smiles' Cleft Care Symposium in early August. Then I went to Colorado for five days.
I just wanted to let you know that I will be having my long-awaited surgery on Monday, Sept. 8th. I will be having some hardware removed in my nose along with a revision on one of the ports of my pharyngeal flap. The surgery is planned for 2 1/2 to 3 hrs. I will be in the hospital one or two nights.
Hugs, Kristi
"Each of us is different.. expect it, respect it, and accept it." Author Unknown
mailto:kbranstetter@delphi.com mailto:kristib@qni.com
Little One's Place at http://people.delphi.com/kbranstetter/ Arhinia at http://www.geocities.com/HotSprings/7682/ ========================================================================= Date: Fri, 5 Sep 1997 18:56:52 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marjorie Harmon <MHTeach102@AOL.COM> Subject: a update
A lot has happened since I posted last.
BJ seems to be on the road to recovery. He has regained partial consiousnes. He hasn't completly come to yet, and that is beginning to worry everyone. He has been off the ventalator for 4 days now. (the longest time so far). However he has had some big fluctuations in his oxygen stats too. The doctors here have quit guessing, and are waiting just like us. He was moved from the Critical care unit back to Intensive care this morning. We are hoping to get him to the stepdownunit this weekend.
I wish I knew what was going to happen next, but I don't know. It seems as if we have all changed so much over the past month. I have only seen Katie, Josh and Jacob a few hours in the past month. They have started school so at least they are busy. David has to start back to work tommorow. He has used all the leave time in the sick bank. So it will just be me at the hospital then. We are aalso working on ways to pay the hospital bills. They are accumulating daily at an unbeliveable rate. And even our insurance won't cover it all.
I am just in a hurry to get him home, so we can begin to rebuild our lives. The house is all ready with ramps and wheelchair lifts and even a partial elevator for the stairs. I guess I will go I seem to be rambling on a lot. I hope and pray that everyone else is doing fine and is healthy.
Marjorie Harmon ========================================================================= Date: Fri, 5 Sep 1997 19:12:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dawn and John Jennerjohn <DnJJenner@AOL.COM> Subject: Re: Greetings
Hi Dori, and family welcome :) I am Dawn Jennerjohn our little girl Courtney is 4 1/2 yrs old, starting pre-school next week... hehehe (yes that is mommy's laughter) she too loves to learn things. Glad to have you here with us. Dawn ========================================================================= Date: Fri, 5 Sep 1997 16:20:44 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Plum update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marianne, thanks for the encouragement and confirmation. I agree it will be a good thing. Last time, they gave Brenna and me our separate waiting area pre op because she was so crazy! It was hard.
Way to score on the book! You must be good to get a copy before the contributors. What is your secret ;-) Thanks and take care, Robyn :-)
At 04:10 PM 9/5/97 -0400, you wrote: >I agree with the need for pre-op meds!! In our limited, anecdotal study (ie >I don't give a hang what the medical literature says, this is our >experience!!) Evan has done much better with pre-op versed! Without it he >has been WILD in the recovery room, requiring more meds there, and more >pain meds. one anesthesiologist said that there is a phenomena called >"reentry psychosis" (sounds like pathology for the Mir astronauts!) which >is avoided with the use of pre-meds. >one other note- the book, Pediatric Plastic Surgery by Bentz which I >mentioned, isn't in the bookstores yet. I realized that it has a copyright >date of 1998 and then the editor (Evan's hand surgeon) wondered how I got a >copy as the contributors haven't gotten copies yet. OOPS!! Keep it in mind >for the future! > >Marianne > ========================================================================= Date: Fri, 5 Sep 1997 16:20:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: a update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Yeah BJ - boy is he a fighter! I am glad to hear he is making forward progress. Marjorie, hang in there. Keep taking care of yourself. I'm sure your kids understand why you haven't been around much. Hopefully soon, you will be able to bring BJ home and have more time with all of your family. We are still praying for your family. Robyn & the Plum
At 06:56 PM 9/5/97 -0400, you wrote: >A lot has happened since I posted last. > >BJ seems to be on the road to recovery. He has regained partial consiousnes. >He hasn't completly come to yet, and that is beginning to worry everyone. He >has been off the ventalator for 4 days now. (the longest time so far). >However he has had some big fluctuations in his oxygen stats too. The doctors >here have quit guessing, and are waiting just like us. He was moved from the >Critical care unit back to Intensive care this morning. We are hoping to get >him to the stepdownunit this weekend. > >I wish I knew what was going to happen next, but I don't know. It seems as if >we have all changed so much over the past month. I have only seen Katie, Josh >and Jacob a few hours in the past month. They have started school so at >least they are busy. David has to start back to work tommorow. He has used >all the leave time in the sick bank. So it will just be me at the hospital >then. We are aalso working on ways to pay the hospital bills. They are >accumulating daily at an unbeliveable rate. And even our insurance won't >cover it all. > >I am just in a hurry to get him home, so we can begin to rebuild our lives. >The house is all ready with ramps and wheelchair lifts and even a partial >elevator for the stairs. I guess I will go I seem to be rambling on a lot. I >hope and pray that everyone else is doing fine and is healthy. > >Marjorie Harmon > ========================================================================= Date: Fri, 5 Sep 1997 17:33:39 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: a update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Harmon Family,
Of all the e-mails I had to wade through since vacation yours has been the most HEARTBREAKING! You are doing a fabulous job holding up under the strain and we can't thank you enough for taking the time to keep all of us updated on BJ's progress. I know for myself it is the first thing I look for when I sign on each time.
It pains me to see you mortgaging your property to get help for BJ. Is there a better social worker that could look into help for you? I don't know if this is a federal funded program (I think it is) that we have in California that you may have in your state, too. You have to apply for it through your Medicaid (Medi-Cal for us) office but I believe they get help from the federal to supplement their expense. It is called the "Early Periodic Screening, Diagnostic & Treatment (EPSDT) resource". It is suppose to help families with children, who have large medical bills, with medical services that their insurance doesn't cover, etc. The qualifications are different than for Medi-Cal in that the parents income is NOT considered. Only the assets of the child (age birth to 21).
Warning: If your child has a bank account or funds that are over $2,000 they will be disqualified. Keep their money in an account under your own name so they won't be denied services such as this or in the event of the parents death. They would have to liquidate their assets before they would qualify for services.
Do you have a resource center for help there? My case manager filled out the paperwork for us.
I know you don't have time to make any inquiries but maybe a friend could make some calls for you. Maybe if they call your congressman/woman or someone in your district or the local news station or radio station and tell your story they could help in some way or make an appeal for donations to help. Something?
These are only a few rambling suggestions. I wish we were closer and could help you out. We are with you in spirit though.
I know I've rambled enough already but I thought you could use this. I have always liked it myself. I was planning to add it to my next newsletter. You may have already seen it. It was written by Erma Bombeck, May 11, 1980.
MOTHERS OF DISABLED CHILDREN
Most women become mothers by acident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecilia. "Rudledge, Carrie: twins; patron saint ... give her Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles. "Give her a blind child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says God, "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it." "But, Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, pen poised in midair. God smiles, "A mirror will suffice."
Please e-mail me privately with your address, etc. and I will add you to my mailing list.
Hang in there!! We are all pulling for BJ and the family!!!!!!
Christine Clark
Marjorie Harmon wrote: > > A lot has happened since I posted last. > > BJ seems to be on the road to recovery. He has regained partial consiousnes. > He hasn't completly come to yet, and that is beginning to worry everyone. He > has been off the ventalator for 4 days now. (the longest time so far). > However he has had some big fluctuations in his oxygen stats too. The doctors > here have quit guessing, and are waiting just like us. He was moved from the > Critical care unit back to Intensive care this morning. We are hoping to get > him to the stepdownunit this weekend. > > I wish I knew what was going to happen next, but I don't know. It seems as if > we have all changed so much over the past month. I have only seen Katie, Josh > and Jacob a few hours in the past month. They have started school so at > least they are busy. David has to start back to work tommorow. He has used > all the leave time in the sick bank. So it will just be me at the hospital > then. We are aalso working on ways to pay the hospital bills. They are > accumulating daily at an unbeliveable rate. And even our insurance won't > cover it all. > > I am just in a hurry to get him home, so we can begin to rebuild our lives. > The house is all ready with ramps and wheelchair lifts and even a partial > elevator for the stairs. I guess I will go I seem to be rambling on a lot. I > hope and pray that everyone else is doing fine and is healthy. > > Marjorie Harmon ========================================================================= Date: Fri, 5 Sep 1997 17:52:30 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Pediatric Plastic Surgery Book MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Marianne and everyone,
The Pediatric Plastic Surgery Book is available from the publisher. I just ordered my copy yesterday. It carries a hefty price tag (you were VERY lucky, Marianne). The cost is $295.00 (medical books are always out of this world) and it takes about 3 weeks to receive (I have been told, I will see).
If the price didn't drop you to the floor and you still want to order it, contact:
Appleton & Lange 4 Stamford Plaza P. O. Box 120041 Stamford, CT 06912-0041 (203) 406-4500 x4690
The ISBN # is 0-8385-7820-9
Thanks for the publishers info on the phone yesterday, Marianne. Now why are you writing when you should be packing, etc., for your big move? You really will drive yourself over the edge before you get out here.
Take care!!!!!
Christine ========================================================================= Date: Fri, 5 Sep 1997 18:05:31 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: APERT GET TOGETHER IN CALIFORNIA MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Message to all,
As stated in my last newsletter, the 3rd Annual Northern California Apert Family Get Together will be on Saturday, September 27th. I decided against Marine World this year but had trouble reserving a spot in the Stockton area so, instead, it will be at our house in Fair Oaks (east of Sacramento). Below is a copy of the information on the flyer going out to west coast families on my mailing list. I am posting it here in case you want to come, too, and haven't signed up for the mailing list yet or are coming from another state.
APERT GET TOGETHER Saturday, September 27th at 11:00am
POTLUCK, BBQ & SWIMMING at the Clark's house in Fair Oaks, CA
Bring a dish to share: Last name, A-L, salad or side dish Last name M-Z, appetizer or dessert
and
donation for burgers, hot dogs and beverages
Please call Christine Clark (916) 961-1092 by 9/20/97 with number attending and to get directions
Hope to see you then!
Christine ========================================================================= Date: Fri, 5 Sep 1997 18:23:40 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: APERT SUPPORT & INFORMATION NETWORK MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Message to all new families and individuals,
I have a 7 year old daughter, Michelle, with Apert Syndrome. I started this organization in 1995 for 4 families and now have a mailing list of over 200 families and professionals around the world.
If you would like to be added to the mailing list to receive my newsletter, Apert News, (loaded with info and pictures) and maybe join the networking list (70 have so far), then please contact me:
Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone & fax) apertnet@ix.netcom.com
Send the names of everyone in your family, the birth years of the children, your address, phone number and e-mail for my records. I will only release this information to the networking list with your authorization.
Thanks.
Christine ========================================================================= Date: Fri, 5 Sep 1997 21:29:45 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonro@CADVISION.COM> Subject: Various MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
My wife and I would like to pass on our best wishes to the Harmon family. We were happy to hear that B.J.'s condition has improved, and we hope for continued improvement in the near future.
It is hard for us to comprehend the enormous financial responsibility of the medical treatments you must face in the United States...our system is quite different...but we wish you all the best in doing so!
Thanks so much for the recent information about pre-meds. Our daughter Lindsay will be going into surgery in the next two weeks for work on her thumbs, and we will explore this will the doctors.
Many thanks again for the useful and interesting information ...
Robin MacDonald ========================================================================= Date: Sat, 6 Sep 1997 20:30:16 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@ICARUS.IHUG.CO.NZ> Subject: premeds Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
What is is normal situation in USA and the rest of the world for premeds and allowing parents to be present when the child goes under anaesthetic?
Amy had no premeds until her last finger surgery at age 4 1/2 so I don't have enough experience to know if they make a big difference. I believe it is standard in New Zealand for older children and adults to have a premed of some sort.
When Amy was 10 months old she had her suture release and a facial advancement. She was whisked away crying by a dragon nurse. This was in a large public hospital basically for adults as there is no paediatric neurosurgery facility in a childrens hospital in NZ. We were green and ignorant.
When she had her feet done a year later she was operated on in the new childrens' hospital. One parent was expected to be with her and hold her while she passed out. We thought this was great.
When she had her first hand operation a few weeks later at a third hospital we enquired about the situation there. We were met with blank stares. The idea did not seem to have occurred to anyone although there are several paediatric wards at that hospital. We got assertive and Amy was always accompanied by a parent (we took it in turns) when she went under for her many operations there. It now seems to be the norm there too ( I don't know if we can claim any credit for that).
I admit to having no idea what the policies are in the rest of NZ but would nonetheless be very interested to know what happens in other parts of the world.
Howard, Ann and Amy ========================================================================= Date: Sat, 6 Sep 1997 11:03:38 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: premeds
Here at Children's Hospital in Pittsburgh, the premedication (Versed nose drops) is usually administered in the Same day Surgery Unit. Then you go upstairs to the Pre-op holding area whichis a combination of stretchers, suction, monitors, etc and playroom. Parents stay with their kids in there until they are ready to go through the door into the OR. Babies and little ones are carried in by their surgeon or anesthesiologist. In my observation, even kids without premeds seem to be ok as long as we can see. They may be more frightened when actually masked in the OR. this system has worked well for both Evan and my girls who have had ear tubes and adenoids removed. When Sarah was three she had a lipoma removed from her scalp in a surgicenter in Rochester, NY. There they did not use premeds but had the parents don a paper "space suit" to carry them into the OR. One look at me in the suit and she became hysterical. it was awful! After, she had "black eyes" from them having to hold the mask on her so tightly while she was fighting. I doubt that it is routine for parents actually to enter the operating suite. It's often hard to tell which stoic parent will be the one to pass out and throw a further wrench in the works. Pre-meds for all!! ;) Actually, I'm ready to propose a frequent flyer lounge for parents like us instead of the dismal OR waiting rooms. Like the airlines have for the high mileage flyers! I'll have a go at it again on Wed as Evan has his third web spaces separated and a hernia repair (This weeks special at your medical center- a free hernia repair with any operation requiring an overnight stay! haha)
Ciao! Marianne ========================================================================= Date: Sat, 6 Sep 1997 15:05:17 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: New subscriber
We are getting ready to make a trip to Chattanooga to talk to Dr. Larry Sargent. I saw your note and was wondering why you were still searching for a team after your visit with Dr. Sargent. I am interested in getting as much information from parents as possible as it seems they are the best source of information. My son has had a cranioectomy in Houston by a team that we felt very comfortable with. It has now come to my attention that Dr. Sargent does a completely different type of surgery with the results we are looking for. We were not satisfied with the flatness of Jonathan's forehead and the heigth of his head considering we were told that the surgery would really make a difference. NOT! Since you have already been to Chatanooga we would be interested in hearing how your visit went. Our e-mail is GSieb91515@aol.com. Good luck on your evaluation in Dallas. We would be very interested in hearing what they had to say as well since we are in Houston.
Regards,
Brenda Siebert ========================================================================= Date: Sat, 6 Sep 1997 15:19:56 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Ceci Kilner Web Page
Hi Chris, Reggie, Ceci and Blair,
We are the Sieberts in Houston, Tx. Our son is 9 months old and is preparing for hand surgery. We are still researching and talking to different surgeon's. We have been told very conflicting information from different doctors. Most have told us they do not recommend separating the toes for the same reason you stated in your note to Christine. However, we have met a little girl (hi kimberly) who had hers done and they look fabulous with no problems to date. We also saw a 12 year old boy who did not have the surgery and he is having problems with the shape of his feet extremely deviated to one side. Any comments would be appreciated. Who did Ceci's hands? We live in Houston now but are from Maryland and are very familiar with Johns Hopkins. We would not be opposed to traveling northeast if we felt that was the best place to go. We'd love to hear from anyone regarding hand surgeons. The first surgeon told us not to expect all 5 fingers but that he wouldn't know until he went in. He proposed beginning with releasing his pinkie and straightening his thumb. I've heard from others that they don't like to do the thumb straightening until they are older for more bone growth. Anyway the second surgeon was very optimistic for 5 functional fingers. So needless to say we are somewhat confused as to why there would be such a difference of opinion. Jonathan is demanding my attention at the moment so I willl end on that note.
Regards,
Brenda Siebert ========================================================================= Date: Sat, 6 Sep 1997 16:53:22 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: Ceci Kilner Web Page
Hello everyone: Our son, Tim, is fifteen years old and has Aperts Syndrome. On the question regarding the separation of toes, we opted not to go that route; nor was it ever suggested. Tim is treated at Boston Children's Hospital. He has had 15? surgeries to date and we are not in any rush to put him through much more. His feet are functional and that is enough for us. He gets regular care from a podiatrist. Finding shoes that fit is difficult; we are now into New Balance sneakers which tend to run wide. As far as the hand surgeons go, Tim has been treated by several; the most recent being Dr. Upton at Children's in Boston. Dr. Upton co-authored a book on plastic surgery. Tim is the inside cover photo!! Tim has four fingers and has had one thumb straightened. His hands are functional. He can ride a bike, with coaster brakes. His bowling average is 90 and he types 40 words a minute. Although Dr. Upton would love to do more for Tim's hands; we are on hold for now. Tim recently (January) had his mid-face advancement. The procedure went very well and he looks great. The team that performed the surgery included Dr. John Mulliken (Boston-Children's) and Dr. Nalton Ferraro. They are great. The surgery lasted 17 hours. The recovery was tough. Tim did very well and was home in 2 weeks. On the issue of anesthesia...Tim has great difficulty with anesthesia. He ALWAYS has nausea afterwards. They have tried everything to help with this; even the chemo drugs. So far nothing works. We have also requested to have Tim premedicated in the preop area. He is usually groggy but never fully out before they take him. The last surgery was postponed because he got so nervous in the OR that he vomited solid food. Dr. Ferraro felt that his digestive system had stopped working the day before his scheduled surgery because he was so nervous. The second try we had him admitted the night before, put on a liquid diet and given valium via IV. We really needed some too!!! (I'm all for premedicating the parents....) At any rate this approach worked. We are learning all of the time. At Tim's age now, we are at the point of helping him to decide what he wants and doesn't want. The important stuff has been done; except for the LeFort III for his jaw. Let me know if I can answer any questions about the cranio-facial team at Children's in Boston. Beth Tolson ========================================================================= Date: Sat, 6 Sep 1997 15:05:33 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: Ceci Kilner Web Page In-Reply-To: <970906165322_859253416@emout12.mail.aol.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi Beth,
Could you please provide the address and phone number of the Boston Children's Hospital so I can give the information to a young mother with a 22 mos old child with Pheiffer Syndrome?
I am trying provide a list of craniofacial clinics that she cans go to because her daughter has alots of breathing problem and the trach doesn't seem to be helping her at all. Her daughter will be going home from the hospital this weekend after she recovered from a severe respiratory infection. She had been in and out of the hospital so many times that the doctor only assumed that she might not make it to the age of 2 yrs old or older.
The parent and the child had been to Chanatooga, TN for the last cranial surgery performed by Dr. Larry Sargent. Dr. Larry Sargent had told the parent that he felt that the child should wait until she's about 5 yrs old to have the midface advancement done. The parent really felt that they should not wait that long for their daughter is still having alots of breathing problems and occasionally keep getting respiratory infections. I certainly agreed with the parent after talking with them on the phone. I personally think that there is a craniofacial surgeon who can do the midface advancement on a child at any earlier age before the age of 5 yrs.
I'm sorry but I can NOT give out the parent's and their child's names.
Right now I am writing a letter along with a list of recommended craniofacial clinics to the parent so they can get the help they needed.
Any suggestions?? Please let me know.
Thanks, Penny
On Sat, 6 Sep 1997, Beth Tolson wrote:
> Hello everyone: > Our son, Tim, is fifteen years old and has Aperts Syndrome. On the question > regarding the separation of toes, we opted not to go that route; nor was it > ever suggested. Tim is treated at Boston Children's Hospital. He has had > 15? surgeries to date and we are not in any rush to put him through much > more. His feet are functional and that is enough for us. He gets regular > care from a podiatrist. Finding shoes that fit is difficult; we are now into > New Balance sneakers which tend to run wide. > As far as the hand surgeons go, Tim has been treated by several; the > most recent being Dr. Upton at Children's in Boston. Dr. Upton co-authored a > book on plastic surgery. Tim is the inside cover photo!! Tim has four > fingers and has had one thumb straightened. His hands are functional. He > can ride a bike, with coaster brakes. His bowling average is 90 and he types > 40 words a minute. Although Dr. Upton would love to do more for Tim's hands; > we are on hold for now. > Tim recently (January) had his mid-face advancement. The procedure went > very well and he looks great. The team that performed the surgery included > Dr. John Mulliken (Boston-Children's) and Dr. Nalton Ferraro. They are > great. The surgery lasted 17 hours. The recovery was tough. Tim did very > well and was home in 2 weeks. > On the issue of anesthesia...Tim has great difficulty with anesthesia. He > ALWAYS has nausea afterwards. They have tried everything to help with this; > even the chemo drugs. So far nothing works. We have also requested to have > Tim premedicated in the preop area. He is usually groggy but never fully out > before they take him. The last surgery was postponed because he got so > nervous in the OR that he vomited solid food. Dr. Ferraro felt that his > digestive system had stopped working the day before his scheduled surgery > because he was so nervous. The second try we had him admitted the night > before, put on a liquid diet and given valium via IV. We really needed some > too!!! (I'm all for premedicating the parents....) At any rate this > approach worked. > We are learning all of the time. At Tim's age now, we are at the point of > helping him to decide what he wants and doesn't want. The important stuff > has been done; except for the LeFort III for his jaw. > Let me know if I can answer any questions about the cranio-facial team > at Children's in Boston. > Beth Tolson > ========================================================================= Date: Sat, 6 Sep 1997 19:17:24 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: Ceci Kilner Web Page
Penny, The address for Boston Children's Hospital is 300 Longwood Avenue, Boston, MA. The main phone # is 617-355-6000. The coordinator for the craniofacial clinic is a woman named Kit Bowry. Her # is 355-6309. Dr. Mulliken's secretary's # is 355-6578. Again, the plastic surgeon is Dr. John Mulliken who has worked with Dr. Tessier from France. (Dr. Tessier was actually in the United States several years ago and saw Tim during a clinic visit.) The other members of the team are Dr. Nalton Ferraro, the oral surgeon, an extremely compassionate and honest doctor; Dr. Steig is the neurosurgeon or Dr. Michael Scott. The orthodontists are Dr. Bruun and Dr. Schustermann. Needless to say, there are other specialities represented on the craniofacial team, depending upon the case. We have been very happy with the team approach. Good luck and keep us informed.
Beth ========================================================================= Date: Sat, 6 Sep 1997 18:20:26 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <kbranstetter@DELPHI.COM> Subject: Re: premeds In-Reply-To: <970906110336_1145286523@emout08.mail.aol.com> MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Hi, I have to comment on this thread... For one thing, I am having my 35th surgery on Monday. For another, I am dead set against being pre-medicated for surgery.
When I was young, nearly every time before surgery, I was premedicated. I had nausea and dry heaves so bad from the premeds, It sucked being nauseated before and after surgery. I think it was a bigger trauma then being put under by a mask. At fourteen, Mom and I decided to cut off the premeds. I had a ten-hour surgery in Oct. 1978. I had no premeds before that surgery and no pain meds afterwards. It was a lot of reconstructive surgery. I did not have anymore premeds before surgery until I changed to another hospital in 1988. I was 24 yrs. old at the time. Both Mom and I told the anesthesiologist "No premeds." Did he listen?? NO I was still premedicated and felt nauseous even with the anti-nausea meds. I had three more surgeries there and was premedicated everytime. I changed hospitals again 1996.. I was given the choice of having premeds or not. I chose "No premeds." I was given pre-surgery injections of antibiotics and anti-nausea meds. I still felt a little nauseous.
Monday I am dealing with a new old hospital (I was born at this hospital). Hopefully I'll get to talk to an anesthesiologist in the preop area. If I have to beg and plead, my mom is coming into the holding area with me. <G>
As you can see, I am very proactive when it comes to my surgeries. I don't let just anyone do anything to me without consulting me first.
Hugs, Kristi
"Each of us is different.. expect it, respect it, and accept it." Author Unknown
mailto:kbranstetter@delphi.com mailto:kristib@qni.com
Little One's Place at http://people.delphi.com/kbranstetter/ Arhinia at http://www.geocities.com/HotSprings/7682/ ========================================================================= Date: Sat, 6 Sep 1997 18:30:45 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <kbranstetter@DELPHI.COM> Subject: Re: Ceci Kilner Web Page In-Reply-To: <970906191724_-400307726@emout17.mail.aol.com> MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Hi Beth, Many of the plastic surgeons who perform craniofacial reconstructive surgeries here in the United States have either been trained by Dr. Tessier or trained by a plastic surgeon who was trained by him. My current PS did a fellowship at his clinic in Paris France. He is a good friend of my retired PS. My retired PS convinced him to come to KC as a consultant in Nov. 1977... I was the first patient he ever operated on in KC. He ended up doing eight of my reconstructive surgeries.
Hugs, Kristi
"Each of us is different.. expect it, respect it, and accept it." Author Unknown
mailto:kbranstetter@delphi.com mailto:kristib@qni.com
Little One's Place at http://people.delphi.com/kbranstetter/ Arhinia at http://www.geocities.com/HotSprings/7682/ ========================================================================= Date: Sat, 6 Sep 1997 20:55:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonro@CADVISION.COM> Subject: Pre-meds MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Well, perhaps what parents should do (if at all possible) is to undergo a pre-med themselves in order to evaluate their effect? Not sure this would be possible...but certainly someone who has experienced any type of medication is the best judge. ========================================================================= Date: Sat, 6 Sep 1997 21:38:26 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: Ceci Kilner Web Page In-Reply-To: <970906191724_-400307726@emout17.mail.aol.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi Beth
Thank you so much for the information and I will certainly pass it along to the parent of a child with Pheiffer Syndrome.
I really appreciate that. I will keep you posted on this issue whenever I hear the news.
Hugs, Penny :-)
On Sat, 6 Sep 1997, Beth Tolson wrote:
> Penny, > The address for Boston Children's Hospital is 300 Longwood Avenue, > Boston, MA. The main phone # is 617-355-6000. The coordinator for the > craniofacial clinic is a woman named Kit Bowry. Her # is 355-6309. Dr. > Mulliken's secretary's # is 355-6578. Again, the plastic surgeon is Dr. John > Mulliken who has worked with Dr. Tessier from France. (Dr. Tessier was > actually in the United States several years ago and saw Tim during a clinic > visit.) The other members of the team are Dr. Nalton Ferraro, the oral > surgeon, an extremely compassionate and honest doctor; Dr. Steig is the > neurosurgeon or Dr. Michael Scott. The orthodontists are Dr. Bruun and Dr. > Schustermann. Needless to say, there are other specialities represented on > the craniofacial team, depending upon the case. We have been very happy with > the team approach. Good luck and keep us informed. > > Beth > ========================================================================= Date: Sat, 6 Sep 1997 23:23:14 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Pre-meds In-Reply-To: <341225C2.2766@cadvision.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 08:55 PM 9/6/97 -0700, you wrote: >Well, perhaps what parents should do (if at all possible) is to undergo >a pre-med themselves in order to evaluate their effect? Not sure this >would be possible...but certainly someone who has experienced any type >of medication is the best judge. >
My experiences (circa 1968-88, so they may be out of date, different drugs, etc)--I always had a "sedative" before surgery, and it never did a THING (other than make me a little dizzy) I was always wide, wide awake going into the OR, and I must tell you parents, those were some of the loneliest, most spiritually traumatic times of my entire childhood and young adulthood--the minutes (sometimes up to an hour) spent lying on a gurney, waiting for the surgeon to arrive, gown up, etc. OR's have a certain characteristic sound, temperature, smell, visual, etc, which are NOT something you want your child to have his/her senses imprinted with.
There are many parents who are demanding to stay with their child until they are asleep (getting permission to scrub and gown up themselves, if that's what it takes for that particular child to be unconscious when they are separated from the parent). No, many hospitals' anesthesiology depts are not wild about this, but when faced with an educated, emotionally capable parent who believes that it is enough of an issue that they will threaten to take their business to another hospital if their needs are not met, protocol has a way of changing rapidly (or at least it does in a semi free-market medical economy) . . . A friend of mine recently fought to be in the OR with her daughter, and was literally told by the surgeon himself that she would have to consult with the OR nurses ("it's their decision, their territory")--so protocol operates differently in different hospitals, to be sure. She was allowed in (and her husband was allowed into recovery to be there at the moment her daughter woke up), but she told me that when a doctor said "Well, we'll see . . ." , she answered, "NO, not 'we'll see"-- this is IMPORTANT, and the scheduling of the surgery hinges on it!!". From a psychological standpoint, this is a very crucial issue--one worth fighting over. I know that by now there must be pros/cons printed in anesthesiology journals re: parents in the OR--I'll look the next time I go to my local medical school library, since it would be good to phrase the argument in terms that the professionals have already used themselves. Lark in Portland, Oregon, USA (29 yr old with bilateral CL/P) ========================================================================= Date: Sun, 7 Sep 1997 08:36:43 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Re: Pre-meds MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Ceci has always had that pre-med that tastes like hot-peppers (something hydrochlorate perhaps ?) and has never had any problems. Our hospital (Fairfax Hospital in Virginia) has a great protocol (or maybe it's just the craniofacial surgery team), but they always have either me or my wife put on a mask and gown and take Ceci into the surgical suite. They let me stay for as long as it appears that Ceci needs me - usually until they have put on the mask and she goes under. They always let her keep her favorite pacifier so she feels secure in the recovery room even if we don't get there before she awakes. The last two surgeries (mostly hand), they have used a technique where Ceci isn't fully intubated. She has much less airway irritation which helps her recover faster. Apparently, the craniofacial team only works with a select few pediatric anesthesiologists. These guys are great and spend time with us beforehand to confirm all sort of details, discuss any past problems, and generally get to know the little person they will be working on.
>---------- >From: macdonro@CADVISION.COM[SMTP:macdonro@CADVISION.COM] >Sent: Saturday, September 06, 1997 11:55 PM >To: APERT@LISTSERV.AOL.COM >Subject: Pre-meds > >Well, perhaps what parents should do (if at all possible) is to undergo >a pre-med themselves in order to evaluate their effect? Not sure this >would be possible...but certainly someone who has experienced any type >of medication is the best judge. > ========================================================================= Date: Sun, 7 Sep 1997 11:30:43 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: premeds
Kristi- Good luck on your next surgery! We'll be keeping you in our thoughts and prayers. One point about your pre-med experience. I doubt that you got the same drugs that the babies are getting now. I have been referring to nasal drops of Versed, not injectable narcotics and anti-emetics. I wholeheartedly agree that as kids get older they should be able to choose for themselves. When my Sarah had her ear tubes inserted at age six, she didn't need anything and happily walked into the OR hand in hand with her ENT. At age three it was a very different story. Everyone also responds to different drugs in different ways. I just think they should be offered as an option , parents shouldn't have to beg, wheedle, and cajole the anesthesiologist to consider it.
Marianne ========================================================================= Date: Sun, 7 Sep 1997 11:48:26 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: Pre-meds
Good point Lark! As a parent and a health care provider (former surgical PA), I can see the pro's and con's on both sides. And believe me- OR nurses really do rule the roost in terms of their rooms. They also are the "sterile technique police" with eagle eyes which can catch the most minute possibility of contamination. After our experiences with hospital-acquired infection, I have to support that role! Depending on the staffing levels, size of the surgical team, and physical space and layout of any given OR room, a parent can be either no big deal or further risk. Instead of preop sedatives, drugs like Versed have amnestic qualities which means that usually the patient does not remember the preop events, thus decreasing the likelihood of anxiety the next time around. Also, in our case, being unable to eat for a long time prior to a big surgery makes our boy a very grouchy baby, leading to crying , leading to the need for increased suctioning, more secretions, etc. Preop meds tend to keep him happier if a little inebriated and cut that cycle off at the beginning. Maybe parents need it too- little ones pick up on the anxiety level of the caregivers/parents. In our case, I will bring Evan to the hospital myself, leaving Dad at home as I am more comfortable in the hospital miiieu than he is. A couple of his regular nurses have fallen apart sending us odd in the early hours for a big surgery...now there is one who is always booked to work the night shift before as she is consummately organized and doesn't get emotional until later- thereby sending us off on a positive,upbeat note.
Marianne ========================================================================= Date: Sun, 7 Sep 1997 12:18:50 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marjorie Harmon <MHTeach102@AOL.COM> Subject: Re: premeds
As far as premeds go, BJ was never given any. (nor us the option of him having them) It has always been fairly easy to knock him out. All they have ever done is placed the mask lightly over his trache. This never seemed to frighten him much. I think this is due to the fact that he is used to receiving oxygen through his trache. We have been very lucky since he is always in ICU instead of the Day Surgery Ward before surgery they have let us hold him and stay with him until he is all the way under. They don't even move him from him his bed until he is out.
BJ seems to be continuing to show small steps of improvement. He is still partially comatose, but is beginning to show some signs of stimulus awareness. He was put back on the ventaltor again last night, but was easily weaned from it again this morning. I have now crocheted at least a dozen baby blankets (the only I ever learned to crochet) Does anyone know anyone having a baby. I think this time I will just keep crocheting until it is a little bigger. The hospital staff have been great. They have put a chair that reclines in his ICU Cubicle. It is a little more comfortable than the couches in the waiting room. They have also allowed us to put some food in their refrigerator. Our eating in the cafateria 3 times a day was getting expensive. We meet with the insurance case manager tommorow. They should be able to help us figure out what to do about the expenses.
Our insurance company will pay 85% of all the hospital expenses, but that will still leave us owing more than we can both make in a couple years. I have also conacted several social agencies about getting home care services for BJ. If anyone can think of anything I am forgetting let me know. We are looking at taking him home in the next 3 weeks. One of the next thing I need to do is work with the school. That is hard to do because right now we don't know how much he will recover, or how much damage was done. The doctors have told that his innercranial pressure was too high and unstable for too long for him not have some severe difficulties.
I want to apologize for rambling on it is just so nice to have someone to talk to that will understand.
Marjorie Harmon ========================================================================= Date: Sun, 7 Sep 1997 13:29:42 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve And Stacy Bell <sshb@EROLS.COM> Subject: Hand surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
<George Siebert> wrote: > > Hi Chris, Reggie, Ceci and Blair, > > We are the Sieberts in Houston, Tx. Our son is 9 months old and is preparing > for hand surgery. We are still researching and talking to different > surgeon's. We have been told very conflicting information from different > doctors. Most have told us they do not recommend separating the toes for the > same reason you stated in your note to Christine. However, we have met a > little girl (hi kimberly) who had hers done and they look fabulous with no > problems to date. We also saw a 12 year old boy who did not have the surgery > and he is having problems with the shape of his feet extremely deviated to > one side. Any comments would be appreciated. Who did Ceci's hands? We live > in Houston now but are from Maryland and are very familiar with Johns > Hopkins. We would not be opposed to traveling northeast if we felt that was > the best place to go. We'd love to hear from anyone regarding hand surgeons. > The first surgeon told us not to expect all 5 fingers but that he wouldn't > know until he went in. He proposed beginning with releasing his pinkie and > straightening his thumb. I've heard from others that they don't like to do > the thumb straightening until they are older for more bone growth. Anyway > the second surgeon was very optimistic for 5 functional fingers. So needless > to say we are somewhat confused as to why there would be such a difference of > opinion. Jonathan is demanding my attention at the moment so I willl end on > that note. > > Regards, > > Brenda SiebertHi Brenda, I also have a nine month old with Aperts's her name is Brooke. She has her first hand surgery tomarrow. Dr. Kyle Bickel at Johns Hopkins is doing her surgery. Brooke is lucky with her hands because her thumb and pinkie are not webbed to the three middle fingers that do not contain joints. If they were, Dr. Bickel told us that the first thing to be done would have been to release the thumb and pinkie so that a grasp could be achived. Then work on seperating the other fingers. Tomarrow he will release her 2nd finger from the 3rd and 4th, remove webbing to totally free her pinkie from the 4th finger , remove and reshape the skin inbetween her thumb and 2nd finger to give her more extention, and remove most of the fatty tissue on top of her hands. She does so much with her hands now that I can't wait for this to be done. If you would like it her is his number 410-955-6897,1-800-JHU-HAND. His specialty is Hand Surgery. Stacy Bell ========================================================================= Date: Sun, 7 Sep 1997 19:47:16 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Go USA <gousa@OCP.KCMO.COM> Subject: Re: Hand surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
HI!
Our son Shawn Allison has had his big toes released. Our decision to this point is to leave the other toes together.
Our hand and foot surgeries have been done by Dr. Khouri who is now in Miami Florida. (Previously in St. Louis, Mo)
When Shawn had his middle fingers (3 and 4) separated, we understood that the way this is successfully accomplished is by using a groin flap. More directly, they sew the hand to a skin flap in the groin area for several weeks.
We were very fortunate that he did not need to have his hand sewn to his groin, and they were able to do normal skin grafting, due to his hand being so fatty on top.
There are many Dr's who just do not go for 5 fingers and suggest parent's leave the middle fingers fused. That was what the surgeons in Kansas City had suggested before we moved our surgeries to St. Louis, where we successfully got 5 fingers on each hand, with no groin flaps as described above.
Pre-op hands can be seen on teeters page. <http://apert.org:81/allison/> and can e-mail us at <gousa@mail.kcmo.com>
We also have been shown the reason for waiting to straighten the thumb. (From several surgeons) The bone they have to break to straighten it will be growth stunted, and results in more problems later. We have found that we are better off keeping informed of the reasons for what Shawn goes through, and not to rely completely on one Dr's recommendation, especially if the problem is something they don't treat on a regular basis, and is not a specialty for them.
Although we have used Dr. Khouri who is now in Miami, and would recommend him highly, we have also heard of Dr. Upton at Children's in Boston. He is supposed to be one of, if not the finest hand surgeons that deals with Apert Syndrome.
Yours in Christ,
Mike Allison