========================================================================= Date: Wed, 29 Jan 1997 00:21:48 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Go USA <gousa@OCP.KCMO.COM> Subject: Re: Artificial Joints Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 08:01 PM 1/28/97 EDT, you wrote: I was just wondering if anybody ever heard about artificial joints for the hands, and possibly for the toes.

Could you please give me some input on how old the child has to be to start separating the toes.

--------------------------------------------------- Hi!

Shawn Allison's Dad!

We personally do not know of very many Apert children that have had their toes separated. Shawn had his big toes separated when he was about 2 years old. (We waited until his fingers were separated.) We decided just to separate his big toes, for a more natural gait. We decided that separating all of his toes would not serve much of a purpose and the scar tissue around the toes would expand his already wide foot.

About the artificial joints in the hands, it was our understanding that the joints for fingers do not have a very long useful life. That would mean many replacements.

Also it seems there might be a stunting of natural bone growth if done to early.

And it seems that if were not done early enough, the brain would not be able to control the movement, as we are told that motor function on movement of things like fingers is developed in the first several years of life. We were told this is why they need to separate fingers in the childs early years.

God Bless you all through Jesus Christ our Lord !!

Mike Allison gousa@ocp.kcmo.com

========================================================================= Date: Wed, 29 Jan 1997 07:25:10 +0000 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Changing Insurance Carriers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

One of the things that we all have to remember in managing these kids with ongoing health needs is that health care insurance coverage must be maintained as uninterrupted as possible.

BEWARE when you are faced with changing health care insurance coverage because you want to make sure that any pre-existing conditions are covered immediately! Occasionally, depending on the policy, there is a waiting period of a year (or even more in more restrictive situations!) and once you switch, you can't plead ignorance if a situation comes up where hefty medical bills get generated for illness or conditions that fall into the pre-existing category. Any time you change jobs, you can keep your current health insurance in force for a year through COBRA ( you have to pay the premiums, though) , and this would be a wise choice until you get new coverage. You're ahead of the game if you have a new job lined up and can negotiate regarding benefits prior to accepting the new position. Also, some new jobs come with a waiting period of a month before new insurance goes into effect!

Aloha,

Joana Magno, aka Mar Mar's Mom Honolulu, HI

Jim Younkin wrote:

> The Younkin family is well too! Sara has had a cold andlabored breathing while she > sleeps. I guess we'll just have to get used to it. > > Also, there's a possibility that we may move to the Pittsburgh area. Any feelings about > CHOP? > > Also, if I take the new job we would have to change insurance carriers. We have been > very pleased with the coverage we've received from Keystone (AmeriHealth) HMO, I was > wondering if anyone had comments on either a)Health America (HMO) OR b)Point of Service > Blue Cross (Select Blue). > > As you know these surgeries aren't cheap. Any suggestions are welcome. > > - Jim ========================================================================= Date: Wed, 29 Jan 1997 17:33:20 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Artificial Joints MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

> At 08:01 PM 1/28/97 EDT, you wrote: > I was just wondering if anybody ever heard about artificial joints for the > hands, and possibly for the toes. I've heard they don't really work/last. But that is only hearing about things. Take it for what it's worth.

> Could you please give me some input on how old the child has to be to start > separating the toes. They did Rosemaries all before she turned five. she is 29 now.

> We personally do not know of very many Apert children that have had their > toes separated. You do now. Rosemarie had hers done, her center toe is fuesed straight but she gets along fine. Walks normally, wears normal (wide) shoes.

> Also it seems there might be a stunting of natural bone growth if done to > early. > And it seems that if were not done early enough, the brain would not be > able to control the movement, as we are told that motor function on > movement of things like fingers is developed in the first several years of > life. We were told this is why they need to separate fingers in the childs > early years.

Its weird but I was just hearing about this about a few weeks ago when we met with a local couple, and was going to type almost the same thing.

Keep writing George ========================================================================= Date: Wed, 29 Jan 1997 17:56:38 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Rosemarie MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Well to all that I told about Rosemarie's meeting with the doctors of Children Hospital (cincinnati), The results are in.

First of all a little history: Rosemarie has been getting colds left and right and got to thinking about relating the to the syndrome. We didn't think much of it, but when we decided we want children we decided to see some of the doctors and get their opinions, well one stated that the midface would open things up a little and help her with colds. She decided against it at the time. after going to the denistist and wanting some dental work done he advised us that she needed some major sugury to correct her bite and straighten her teeth (she was getting some teeth hitting one another and causing pain). Well she didn't want to go through with things at that time. As time passed she decided that it may be worth while (after talking with a very rude (now replaced) family doctor). She made an appointment with Childrens Crainio-facial team. They looked her over, probed her, messed up her hair, stuck stick in her mouth, the whole works. (side trackone of the doctors was a speech doctor, she ask if Rose had any speaking problems(she doesn't), it was all I could do to keep quiet and not say something like She can't Stop talking!!! Although come to think of it she did have a speech problem back in september after we met the Sears' family, she picked up that S.C. Accent real quick) They did scare us a bit, concerning the craino-advancement may cause problems if it isn't done.

They did say that if the suguries were done she would come out looking differently, they promised me Cindy Crawford. After the visit I ask Rose if she would mind if I requested Cathy Ireland(another model for those who don't know) and If they could do the rest of her while they were at it. I got smacked, for no good reason. Well the results are in.

They informed us that she does not have to have all the suguries or even any of them. Rose wants some of the dental done, and a procedure of shaving some of the bone in the sinus area to make the passages bigger, and will be meeting with the surgens later. The told her that as good as she is getting along there is no reason she must have the surguries. (GREAT) and the other can wait until she is ready. For the Midface and Craino-advancement they told her the recovery rate is longer with adults (We knew that) and that a lot of complications could happen, and the risk for all the suguries wasn't worth the benifit to her (mostly apperance) unless she needed them to correct eye problems (The CATCH), she now has to go to a specialist to have her eyes check.

This is good news for us. Remember Rosemarie has had no craino-facial suguries!!

Sorry if this is so long, it's been a long crazy day and we sometimes have to make light of these things or it would drive us CRAZY. (short drive, I know)

Keep in touch George

http://members.iglou.com/daystar http://www.iglou.com/photos webmaster@firstamerica.com see http://www.firstamerica.com ========================================================================= Date: Wed, 29 Jan 1997 17:48:55 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <KBRANSTETTER@DELPHI.COM> Subject: Rosemarie MIME-version: 1.0 Content-type: TEXT/PLAIN; CHARSET=US-ASCII Content-transfer-encoding: 7BIT

Hi George, The doctors are right. It takes adults a lot longer to heal than children. I notice this more and more as I get older. The best time to do a midface/jaw advancement is before age 30. Dr. Tessier told my parents and I that back in 1984.

I hink that some people are just prone to more colds than others. I think that it is all in the immune system. I am not prone to colds or other illnesses. In fact, out of all the people in my family, I am the one who is less likely to get sick. And I walk around my house barefooted n the winter. :-)

Hugs, Kristi :-) ========================================================================= Date: Thu, 30 Jan 1997 10:12:55 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Rosemarie MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Kristi, The doctors did tell her it would open things up so she could drain better, but it is no sure fire fix. Oh well, so much for that. She does have other appointments to check her eyes, and maybe the dental thing. The ones that scared me are not needed!!! Thank GOD!!! and Thanks for your support.

Thanks George

http://members.iglou.com/daystar http://www.iglou.com/photos webmaster@firstamerica.com see http://www.firstamerica.com

Subject: Rosemarie > Date: Wednesday, January 29, 1997 5:48 PM > > Hi George, > The doctors are right. It takes adults a lot longer to heal than children. I > notice this more and more as I get older. The best time to do a midface/jaw > advancement is before age 30. Dr. Tessier told my parents and I that back in

> 1984. > > I hink that some people are just prone to more colds than others. I think > that it is all in the immune system. I am not prone to colds or other > illnesses. In fact, out of all the people in my family, I am the one who is > less likely to get sick. And I walk around my house barefooted n the winter. > :-) > > Hugs, > Kristi :-) ========================================================================= Date: Thu, 30 Jan 1997 10:31:41 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <KBRANSTETTER@DELPHI.COM> Subject: Re: Rosemarie MIME-version: 1.0 Content-type: TEXT/PLAIN; CHARSET=US-ASCII Content-transfer-encoding: 7BIT

Hi George, I hope that Rosemarie's eye exams come out OK!!

If Rosemarie had underwent that surgery, it would have been pretty major.

Hugs, Kristi :-) ========================================================================= Date: Thu, 30 Jan 1997 20:39:48 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dawn and John Jennerjohn <DnJJenner@AOL.COM> Subject: Re: Artificial Joints

Hi there Ize Family...

When Our daughter Coutney went and had her hands done, the doctor that did them had told us he has tried in the past to replace knuckles and such, and he said it was more painful and really hard to do. He said it really not worth going through. Courtney has 4 fingers and a thumb, a little thumb but it works, and she does great so far. And about the feet, we have read and talked to some people that have had this done and they said the feet spread out so bad ( just as the hands) that it is real difficult to find shoes. So we have choosen at this time not to have Courtneys done and she walks and runs fine. Good luck, I hope all turns out well. Dawn Jennerjohn ========================================================================= Date: Fri, 31 Jan 1997 17:02:56 EST Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: Attention problems

Hi- We had an IEP team meeting about Alex yesterday and I am blown away by it. The meeting was going well until 4 school people (teacher, speech therapist, OT and psychologist) all of a sudden started talking about Alex and the problems Alex has staying on task (particularly with paper and pencil tasks) in the Kindergarten classroom with 23 other children, mostly boys, running around! He has always been an active, outgoing child, and always wants to be where the action is! We are aware if this, and also aware that he has little patience or interest in sitting down to practice writing letters or do flash cards. He is a hands on, experiential learner. Well, they started talking about Attention Deficit Hperactivity Disorder and I felt my world crumble around me. It is not that I haven't thought about it briefly at times, but the fact that they would come to this conclusion without first more tactfully sugggesting a medical evaluation, makes me cringe. Furthermore, Alex has a mild-moderate hearing loss and visual perceptual problems (amblyopia and strabismus) on top of the speech, fine motor,etc. This year there were supposed to be a number of classroom accommodations implemented to try to eliminate or decrease the effects of these problems on his learning, but until 3 weeks ago there was no listening device available for use by him in the classroom and the teacher is just beginning to figure out about the rest. So until we see the results that these have on the learning environment for Alex, we can't in good conscience look seriously into a medical reason for the few problems he is having. His attention is selective . He does great with anything one on one but in the classroom gets distracted by every noise, and by the other kids. Is there any evidence that suggests that that kids with Apert have a higher incidence of learning disabilities/ Attention disorders than the general population? Does anyone out there have or know a child with ADHD or ADD who also has Apert? Any advice, suggestions,support would be appreciated! Thanks, Amy Irvin ========================================================================= Date: Fri, 31 Jan 1997 19:05:13 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Attention problems MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dont Let them use the drugs esp Ridlin (sp), unless you want a lump. My sister-in-law used them on her boys and they were so, what can I say, lost. But they did behave, that was about all they did, didn't play much, etc... I'm sure there are lots of discussion groups on this. Consider it may be the TEACHER!!!!! or the SCHOOL!!! Changing schools for the kids is what really helped my sister-in-law. Maybe he also needs a little time to adjust to the other kids also, with all the suguries he may not have been around a lot of other children.

I HATE LABELS!!!!!!!!!!!!!!

For what it's worth George

p.s. Sorry if I take after my father sometimes and say(write) what I think. Wish you the best of luck!!! :-)

http://members.iglou.com/daystar http://www.iglou.com/photos webmaster@firstamerica.com see http://www.firstamerica.com

> Subject: Attention problems > Date: Friday, January 31, 1997 5:02 PM > > Hi- > We had an IEP team meeting about Alex yesterday and I am blown away by > it. The meeting was going well until 4 school people (teacher, speech > therapist, OT and psychologist) all of a sudden started talking about Alex and > the problems Alex has staying on task (particularly with paper and pencil tasks) > in the Kindergarten classroom with 23 other children, mostly boys, running > around! He has always been an active, outgoing child, and always wants to be > where the action is! We are aware if this, and also aware that he has little > patience or interest in sitting down to practice writing letters or do flash > cards. He is a hands on, experiential learner. Well, they started talking about > Attention Deficit Hperactivity Disorder and I felt my world crumble around me. > It is not that I haven't thought about it briefly at times, but the fact that > they would come to this conclusion without first more tactfully sugggesting a > medical evaluation, makes me cringe. Furthermore, Alex has a mild-moderate > hearing loss and visual perceptual problems (amblyopia and strabismus) on top of > the speech, fine motor,etc. This year there were supposed to be a number of > classroom accommodations implemented to try to eliminate or decrease the effects > of these problems on his learning, but until 3 weeks ago there was no listening > device available for use by him in the classroom and the teacher is just > beginning to figure out about the rest. So until we see the results that these > have on the learning environment for Alex, we can't in good conscience look > seriously into a medical reason for the few problems he is having. His attention > is selective . He does great with anything one on one but in the classroom gets > distracted by every noise, and by the other kids. > Is there any evidence that suggests that that kids with Apert have a > higher incidence of learning disabilities/ Attention disorders than the general > population? Does anyone out there have or know a child with ADHD or ADD who also > has Apert? Any advice, suggestions,support would be appreciated! > Thanks, > Amy Irvin ========================================================================= Date: Fri, 31 Jan 1997 21:53:22 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: dkbrbrok <dkbrbrok@MTC.NET> Subject: SUBSCRIPTION-MAILING LIST MIME-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: quoted-printable

Request I be removed from your mailing list or subscription. It has been a great experiance, but our friends with the Apert child, is now on the net and hooking up with you, so I no longer need send them copies of the letters. Thanks and again, REMOVE ME FROM YOUR LIST. God Bless you and all of your members. =20 --=20 MZ=90 ========================================================================= Date: Fri, 31 Jan 1997 23:13:14 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Juile and Bob Sanchez <JSanc10676@AOL.COM> Subject: Re: Attention problems

Amy, I read your note and just about fell off my chair.....I just returned this afternoon from A.J.'s IEP and the words we almost identical. They did not use ADHD, but did the exact same dance. The only reason they didnt use that label is because A.J. is 4 and 1/2. He cannot be assesed yet.....but I clearly heard their intentions to label.......I was very angry and disappointed in them to say the least. This is a new school for us so this was a new experience. I did have to spend a fair amount of time explaining to them again that due to various factors in my childs life he has learned differently how to deal with different situations. A.J. can be very manipulative. He at times is very stubborn, he has also had 11surgeries, prenisone, albuterol and cromolyn, uncountable hospital stays, non-stop doctor visits and nursing care in the home since he was 3 months old. A.j. is very smart. He dosnt have the attention span on some things because they bore him or scare him because of his balance and vision difficulties. He also gets frustrated when you dont hear/listen or understand him. This makes him very irritated and he will shut you out to punish you. When it is something He wants to do, he has no problem. I dont know much about ADHD but I know it is controlled with medication. By all means, if there was something so easy as taking a pill to make everything better for my child, then I would be first in line but reality is teaching A.J. is challenging. I know...we work with him everyday. But labeling him one more thing is just a bit too easy at this point and he dosn't deserve that. I refused to sign until they make some corrections but I was able to increase his speech therapy to 70 hours a mth 1on1 time. I believe if they communicate better with him they may see a difference. Bottem line is they will have to work a bit harder to teach him, and sedating him wont make that any easier. I wish we didnt have to always fight for everything. Good Luck!

Julie