========================================================================= Date: Sat, 1 Feb 1997 09:09:50 -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: Judy Gibson <jgibson2@EROLS.COM> Subject: ADHD MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Amy, I have 2 boys with ADHD. My older son was diagnosed at age 3.5. He doesn't have Apert syndrome, just ADHD. When he was younger he had chronic ear infections and partial (but now resolved) hearing loss. I found that the hearing loss made the ADHD much worse -- and I've been told that it's quite common for kids with mild to moderate hearing loss to be misdiagnosed as having ADHD. You might ask Alex's pediatrician for his/her opinion. BTW, a diagnosis of ADHD is often generally made by a developmental team. If Alex has been evaluated by a team of this type, they should already have an opinion about the possibility of ADHD.

Judy ========================================================================= Date: Sun, 2 Feb 1997 20:15:35 -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: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: We're back MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Hello out there. Well... Daryl had his first hand surgery Friday, and all went well. He has a big cast on and a pin in his thumb to hold it in place. He is supposed to have a pinky and a thumb. All we can see is the tip of his pinky. The doctor said the thumb was fused to the other fingers. We go back in a few weeks for the cast to be removed. We are anxious and scared about seeing this new little hand. Let me know of any of your experiences of seeing this for the first time. Were you excited, dissappointed, or what. Also, If any of you have any information on dental with these kids let me know. Do you need an orthodontist that works together with your cranial doctor or can you have an orthodontist and dentist near home that has no association with your cranial doctor? That's all for know. Thanks!

Denise Graham ========================================================================= Date: Mon, 3 Feb 1997 06:47:31 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: We're back

Chad & Denise

>Were you excited, dissappointed, or what.

Some of both. Excited because Krista was getting part of a hand. Disappointed, of course, that it still wouldn't be a "normal" hand. Exhausted from all the surgery. The list goes on.

Our experience with teeth has been that the orthodontist and the craniofacial Dr. don't work together directly, so we were able to get one that is not too far from our home. However, we did ask the craniofacial Dr. for a recommendation of someone in our area. He is familiar with the orthodontists in the area that have dealt with cases like this before and that (in his opinion) do a good job, so his recommendation was very helpful. They do correspond by phone and letter, but they've never been in the OR together (at least not for Krista).

Bob Horning _______________________________________________________________________________ From: Chad & Denise Graham on Sun, Feb 2, 1997 9:12 PM Subject: We're back To: Horning Bob; Information exchange for Apert Syndrome and other craniofacial a

Denise Graham ========================================================================= Date: Mon, 3 Feb 1997 08:08:01 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Attention problems

Warning: This got pretty long. Sorry.

Amy,

ADD/ADHD isn't something you can do a blood test for, so diagnosing it is rather subjective. And in my (admittedly biased) opinion, the less a therapist knows or the less effort he/she puts into it, the easier it is to throw the label ADD at a child. The people in the school did this when Krista was 3-4 years old. NONE of the many non-school related professionals who see Krista have given her that label. It gets my blood boiling when we have had to deal with this, and the latests few posts to the listserver imply that this is not uncommon for Aperts parents.

She does indeed have some of the characteristics of an ADD child, but there are more causes than just ADD for this. Hours of discussion could not get them to work on the things Krista really needed or to look at other alternative explanations. We finally pulled Krista from the Early Childhood Intervention Program at the school because they were very unresponsive to both us and Krista. I believe she was viewed more as a source of additional money (more kids = more money) than as a person to help. I don't intend to bash every school therapist because I've heard good reports from other parents. But our experience with the school has been poor.

Here are a couple things we've learned over time.

1. This is our own theory, but all of Krista's doctors and therapists (with the exception of those from the school - I'm not making that up, it's true) have agreed that there is merit to it. When Krista was young she did not have the ability to get around like other children. She couldn't walk until about 2.5, couldn't crawl until much before that, couldn't grasp with her hands very well, etc., etc. etc. While other kids her age were exploring, pulling stuff off shelves, climbing on furniture, etc. she sat on the floor and had to play with the things within reach.

During that stage of development, a childs brain is being programmed and hardwired with all the stuff they learn by this activity. As they grow older, this becomes an integral part of the "hardware and software" that they use to process information - i.e. to learn. Since Krista didn't get the chance to explore like that, she now processes information in a different way.

A couple examples:

A. Instead of Krista learning to explore on her own, she learned that whatever she needed would be done for her by someone else. At that age, there was no alternative. To this day we still have to prod her to do things on her own. She CAN do many things if she tries (they are difficult because of her hands and elbows). But it takes extra time to let her do it and extra effort to get her to do it. Getting dressed is an example of this. She will start putting on clothes and then get sidetracked by something else and not finish the job. Or cleaning up, or ... the list goes on. It looks like a short attention span, but we believe it is more due to her learning that from infancy. When it finally clicks that she can and should do something on her own, she does a fine job with a perfectly good attention span.

B. We've been told Krista has visual/perceptual difficulties. Once again, this appears to have a physical cause. Krista's hands did not work when she was very young. So she was not able to experience things with her hands and develop that link in her brain between the "feel" of something and the "look" of something. A "normal" child Krista's age (9.5) is able to learn quite a bit reading or hearing something and visualizing that thing in their mind. Krista has trouble doing that because that foundation built in early childhood is missing. She does, however, learn best when she can see and touch and feel things and connect them to the more abstract words and numbers on a page. Without that extra effort, her mind will often wander. On the surface this, again, has the look of ADD. But again, we see it as connected to her early development.

C. Krista is an excellent reader and speller, but lags a bit in reading comprehension. This is similar to B. She can read the words, but they don't connect with a physical object or experience because that early childhood database is not there. She learns best from a book with a lot of good pictures in it, or from TV where she can hear and see at the same time, or from a field trip to a museum or a nature center or whatever.

D. We have found it very difficult for Krista's teachers to understand these concepts. We've lived with it for 9.5 years and area still learning exactly how to work with it, so I'm not trying to cut them down. Plus, they have plenty of other screaming kids to deal with besides just ours. So Krista's performance in school has been either average or a little below. And that has only come with a lot of extra work with Krista at home. So this year we have chosen to home school her. So far it has worked well, although it is a challenge. But it gives us the flexibility to approach things in different ways when needed. We are trying to fill in some of that missing early childhood experience and information. We probably won't be able to completely fill that in, but it does show signs of paying off.

I guess the point is, I think there is an important difference between Krista and an ADD child (and I suspect this is true of other Aperts children as well). She has some of the characteristics of an ADD child, but the cause is related to their early childhood experience, not to a chemical imbalance or whatever the current source of ADD is thought to be. So fixing the problem requires working on the cause, and not just attaching a label and feeding the child another drug. It takes a lot of our time, to fill in some of that missing experience. But our kids are worth it.

By the way, there is a paper listed on Teeter's page about the behavioral aspects of Aperts children. It's in the Clinics in Plastic Surgery volume on Aperts and is "Children with Apert Syndrome: Developmental and Psychologic Considerations" by Leslie Biron Campis, PhD. I felt like I was reading about Krista through much of that paper.

Sorry this rambled on for so long, but these kinds of things has occupied a LOT of our time in the last 9.5 years. I hope it can be of some help to some of you. And I'd appreciate hearing any questions, comments, stories from others.

Bob Horning _______________________________________________________________________________ From: Amy H. Irvin on Fri, Jan 31, 1997 5:16 PM Subject: Attention problems To: Horning Bob; Information exchange for Apert Syndrome and other craniofacial a

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: Mon, 3 Feb 1997 11:40:09 -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: Tony & Sandy Deakins <TDeakins1@AOL.COM> Subject: Re: We're back

While we continue to wish that our daughter, Casey, could have had all the normal digits; she has, nonetheless, three fingers and an opposing thumb. Were we disappointed when, after her inital surgery that this was the final outcome? You bet. This arrangement can be 'tuned' and 'tweaked' as she grows but the number of digits will always be the same.

But, as has been the case with Casey, she continues to teach us important lessons. For example, that "limitation" notwithstanding, Casey can play recognizeable (and, often good) tunes on a penny flute. She has an electronic keyboard on which she does better than I can. She can pick a dime up off of a tile floor; I can't. She writes in a legible hand and operates her computer keyboard albeit differently than I do mine but with no apparent loss in efficiency. While, for her, these things are "...no big deal", we, on the other hand, are very grateful.

The point here is that "handicaps" are often more limiting to those who perceive them than those who have them. And, sometime, those perceptions become more of a constraint than the reality of the disability, whatever it might be. To tell the truth, what Casey really wants is to separate her 'big toe' from the others (...they are all fused) so she can wear thong sandals. Now, there's a priority. Amazing, isn't it? -Tony Deakins ========================================================================= Date: Mon, 3 Feb 1997 11:42:16 -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: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> Subject: Re: We're back Mime-Version: 1.0 Content-Type: text/plain; charset=US-ASCII Content-Transfer-Encoding: 7bit

Hi Denise,

This is Mary Rus, Adrienne's mommy. You touched on a subject that I must share. While waiting anxiously for Adrienne's cast to be removed from her first hand surgery, I thought as though I had prepared myself mentally for what I was about to see - I hadn't. Also, after her cranial surgery sutures, cleaning and dressing and redressing, I thought I could handle anything - I couldn't. What I must say first is that Adrienne now has the coolest little pointer finger, so straight and narrow. But, when the Doc cut her cast off, I didn't see anything of the like - I broke down. Brace yourself!!! Keep focused on the outcome!!! The healing process is magnificent. Cleansing and softening skin graphs are so important. You will see alot of whiteness, dried blood, stitches zigzagged everywhere. To watch the hands heal was amazing to me. The scaring fades away! And most importantly, our babies have their fingers to count with.

Bless you dear, be strong!!!

Mary

______________________________ Reply Separator _________________________________ Subject: We're back Author: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> at SMTP-DDN Date: 2/2/97 8:15 PM

Denise Graham ========================================================================= Date: Mon, 3 Feb 1997 08:26:58 +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: Fingers and toes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Fingers, even when separated will never be normal. But, remember that hands, even without the fingers separated are amazingly "dexterous". Although it is nice to have a hand with 5 fingers, many people with and without Apert's do fine with less --it is a matter of maximizing the function of what you have. I have normal hands, and can't play the piano well --we have many kids and adults on the listserv with Apert's who can do just fine!

I have seen an Apert's child from Sweden (hi, Viktor & friends!) who has almost a normal appearing foot after surgery. Extra bone was removed, all of the toes separated beautifully, scars well healed ---- amazing! Our surgeons initially were not interested in doing anything to the feet, but we insisted, since living in Hawaii means wearing slippers, so we got both big toes separated away. She can decided on the rest of the toes later.

Joana ========================================================================= Date: Mon, 3 Feb 1997 15:29:33 -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: Judy Gibson <jgibson2@EROLS.COM> Subject: ADHD & Aperts MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Bob, I was quite impressed with your evaluation of Krista's learning differences -- and your solution. While some schools are excellent at dealing with kids who learn differently, too many are not. I chose to homeschool my ADHD kids for much the same reason you've chosen to homeschool Krista: unresponsive teachers. They only understood one approach -- drugs. Don't get me wrong, for kids who REALLY have ADHD, medication often makes a huge difference. However, it's only a VERY small part of the solution. Teachers who don't grasp the concept of making changes in the classroom for kids with learning differences shouldn't be there, IMHO, but they are. I also firmly believe that even when a child really has ADHD, drugs are a last resort, because if the teacher isn't willing to make the necessary changes FIRST, the medications aren't likely to help much either.

Judy ========================================================================= Date: Tue, 4 Feb 1997 02:02:14 -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: Jonathan Gentz <IrsNav@AOL.COM> Subject: Re: Attention problems

Hello All

This is Jonathan Gentz's mom (Ann). I just found out that Jonathan at 8 mnths is near-sighted and will need glasses. I took him in because his left eye is wandering. I am wondering of those out there who have had problems with ADD/ADHD labeling have your children also had visual problems? I am especially curious about this because I have a niece who had amblyopia and had to have surgery for it at age five. Well, she is in first grade now and her teachers are trying to put this label on her. My sister is probably going to home school her as well. Bob, I think that this just helps prove your theory. Any kind of difference in experience probably will result in a different style of learning. Think how much different the experience must be for someone with a few physical differences plus some visual problems. My need is being assessed by someone outside the school system. She is a tutor and has a PH.D in education. She got into the line of work when they discovered that her son was dyslexic. I think that it is a great idea to go outside the school system for a qualified second opinion. If any of your children have experienced visual problems I would appreciate input. Any suggestions on how to keep the glasses on? We don't have them yet, but I imagine it will be difficult to fit glasses on a little one with Apert's. I feel I am really going on blind trust with this opthamologist. I really don't understand how they can know a child this age needs glasses. I am worried that maybe this is all related to orbital shape and not a true visual problem. I am worried if this is the case putting glasses on him would actually impair his vision. Again do any of you find links between eye problems and learning labels?

Sorry this was pretty rambling ------------ Ann Gentz ========================================================================= Date: Tue, 4 Feb 1997 18:11:38 -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: Juile and Bob Sanchez <JSanc10676@AOL.COM> Subject: ADHD/

Great information Bob!

Also one other piece of info I have heard in ref to ADHD/ADD, A therapist at Children's Hosp. here told me that many of the children with ADHD had a history of not sleeping well. It was apparent to them that the behavior was better when the children were sleeping well. I know A.J. has never had a full night of un-interrupted sleep because of the trach and suctioning. I guess we will have to wait to see if things change when he has his trach out.

Thanks for the info everyone! Julie

Thanks, Julie ========================================================================= Date: Tue, 4 Feb 1997 21:31:26 -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: Judy Gibson <jgibson2@EROLS.COM> Subject: ADHD MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

>>>Also one other piece of info I have heard in ref to ADHD/ADD, A therapist at Children's Hosp. here told me that many of the children with ADHD had a history of not sleeping well. It was apparent to them that the behavior was better when the children were sleeping well.

This is definitely true. Even my son who really does have ADHD had a significant decrease in symptoms once he had his tonsils out -- they were so big they were causing sleep apnea.

Also, kids who are uncomfortable will have symptoms which mimic ADHD. Adults tend to stop moving when they hurt, many kids tend to move faster. There are many other things which will cause symptoms similar to ADHD. Until the more common ones have been ruled out, its's not reasonable to consider ADHD as a diagnosis.

Judy ========================================================================= Date: Wed, 5 Feb 1997 15:38:40 -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: Cindy Langer <CinLeahLan@AOL.COM> Subject: Info regarding surgeons used for hand surgeries

Hello everyone!

My name is Cindy Langer. I am writing to you all for help in finding a good surgeon to do hand surgeries for an Apert's baby. A good friend of mine has an Apert's baby (who, by the way, has just had her suture release surgery in January and is doing great!). Their doctor is Dr. Salyer in Dallas at Medical City. He was great. The next hurdle they must face is the surgery for their daughter's hands. The doctor's have told them that possibly in May she will be able to have the surgery. Is there anyone on the list from Texas or the surrounding states? If so, maybe you know of a surgeon? Also, how old were everyone's children when they had their hand surgery? Did they open up four fingers? Pinky? Did they do both hands at the same time? My friend's little girl has both thumbs free. The four digits are there. Incidently, my friends are not currently on-line, but plan to be some time in the near future. Thanks for all your help! :)

Hoping to hear from you soon! Cindy ========================================================================= Date: Wed, 5 Feb 1997 15:33:00 -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: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> Subject: Re: Info regarding surgeons used for hand surgeries Mime-Version: 1.0 Content-Type: text/plain; charset=US-ASCII Content-Transfer-Encoding: 7bit

Hi Cindy,

Dr. Salyer is right up there with the best of them alone with Dr. Marsh, Childrens St. Louis. Our Adrienne's hand surgeon was Dr. Roger Khouri, Miami Hand Center, Miami, FL (formerly of Washington University, St. Louis). Both pointers first, both pinkies second, then one hand at a time for middle and ring finder separation. Dr. Khouri used a zigzag procedure. Adrienne also needed a groin-flap procedure done to gain the flesh and skin she needed for the middle and ring finger procedure.

Please don't hesitate to call if any questions.

Hope this helps.

Mary Rus

______________________________ Reply Separator _________________________________ Subject: Info regarding surgeons used for hand surgeries Author: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> at SMTP-DDN Date: 2/5/97 3:38 PM

Hello everyone!

Hoping to hear from you soon! Cindy ========================================================================= Date: Thu, 6 Feb 1997 14:23:01 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Fused Elbows

We're still looking for ideas ourselves. Krista's arms are bent to not quite 90 degrees, so she is able to reach her mouth with a spoon, write reasonably well, etc. That angle is a natural bend for quite a few things. Full extension sounds more difficult.

Krista also has limited shoulder motion. Basically her shoulder joints are fused solid also. But the tendons and muscles have streched enough to give her some range of motion.

As time goes on we slowly are finding adaptive aids that help out some. A button hook for dressing, a rocker knife for cutting food, etc. Some things help, others don't. Many times, things don't work well because the strength of the hand, with the fused joints, is not enough.

The doctors don't hold out much hope of joint replacement. The best suggestion has been to break one arm and reposition it. This provides one hand for short distances and the other for long distance reaching. The downside is that it unbalances the arms for doing tasks that are best done with two similarly positioned arms - such as lifting things. So far we have opted against that for Krista. But for your case it may be more suitable because of the current arm position.

Bob Horning _______________________________________________________________________________ From: Matthew M. Wilcox on Thu, Feb 6, 1997 2:26 PM Subject: Fused Elbows To: Horning Bob; horning_bob@htc.honeywell.com

Hi, We are two therapists (occupational and speech) working with a 2 1/2 year old boy who has Apert Syndrome. He also has elbows that are fused in full extension and limited shoulder range. Can you give any practical suggestions for accomplishing dressing and feeding tasks ? We would appreciate any new ideas or information regarding joint replacement. Thank you for your help.

Sandra Vance, OTR Sara Wilcox, SLP ========================================================================= Date: Thu, 6 Feb 1997 19:41:51 -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: Info regarding surgeons used for hand surgeries

Cindy, I know it would be a ways to go but Dr. Edward Almquist here in Seattle is wonderful. He is very highly regarded and respected. He is also Ken Griffy Jr.'s and Andre Agassi's hand surgeon. With A.J. he first separated the pointer and pinky fingers on both hands. About 3 months later he separated the middle and ring fingers and deepened and straightened the thumbs. A.J.'s skin grafts were also taken from his groin area. A.J.'s has five fingers on each hand that look really nice. His fingers at birth were fused (of course) and just slightly curved. The only bone that was fused was the very tip of the middle and ring fingers. The process started when he was about a year old.

It is my understanding that it is different with each child's hands in Apert's. There is quite a wide degree of variance. Best wishes to you and your friend! Julie Sanchez