Acrodysostosis

my  8 year old daughter has this syndrome and wanted others advise and experience as she gets older
hawkley hawkley
46-50
3 Responses May 10, 2012

Hi, my daughter has acro. She is 14. I am happy to connect and share our experiences. I'd also like to hear more from you and others about what you've experienced. With such few cases in the world, I am always looking for more information.
Thank you, Julie

Hello Julie , thank you for getting in touch . My daughter is now 11 , a great character but starting to go through puberty and am anticipating insecurity around body image and boys as we've all done so it's great to connect with you and hopefully learn from our experiences. We live in Hampshire UK . Where are you ?
How has your daughter coped?
Regards
Sharon

Hello Julie
wondering if you got my last message,and if we could exchange emails to continue communication
regards

sharon

I have just read your post my grandson is 15 months old and has been diagnosed with this syndrome would love to chat with you to find out your experiences because your daughter is much older

Hello Paulad, sorry for the delay. Yes I would be v happy to chat and give advice if I can . My daughter is now 10 great fun, v bright and articulate. And she is very excited about finding another special person like herself albeit only 15 months old!!!!
Where does your grandson live? Does he go to GOSH? We live in Hampshire near Petersfield if you know it ?
Look forward to more chats
Hawkley

Hi
Thank you so much for getting back to me. My daughter, who lives with us, had her son early at 34 weeks he weighed 3lb 8oz and spent 10 weeks in the neo natal unit where they discovered that there was a problem. He was only diagnosed much later after numerous test. My grandson goes for regular physio, and occupational therapy. Could you tell me if your daughter crawled and if so at what age the same with walking he is only just sitting for short periods on his own but likes to be on his feet. We have taken him to a maxillo facial consultant about his nose and they said they would consider surgery before he starts nursery school. We live in Nottingham so attend the city hospital as well as the QMC hospital. It's so nice having someone to talk to about things so once again thank you.

Hoping to hear from you soon.


Regards

Paulad

What kind of advice would you like? My little sister is 18 years old and has Acrodysostosis. We can try to answer any questions you have, we've been through a lot with her.

How does she cope. has she had operations yet.My daughter G. is 9. becoming more aware of her differences> we are at Gosh for regular check ups and operations on her cranialfacial are predicted. Doas she have problems with shoes or anything else and have you recomendations of retailers. ijust want to be prepared for her concerns as she goes through puberty.as your sister has. The hospital has told me there are only about 70 cases in the world so little research and very much watch and see how she develops.
Any imfo would be v welcome
thabk you for your reply

My sisters name is Nic and has not had any operations. For a while, she wasn't growing at all then one day she just shot straight up. She is at 4'9".. I noticed with my sister that she grew into her face, so to speak. We constantly have problems with shoes; we've noticed she walks more on the inside of her foot so instead of walking normally like the rest of us she leans her feet to the inside and by doing that it wears it down faster. If you look at your daughter’s shoes and notice that one side has more wear than the opposite side that is because she leans to that side when she walks around, so watch her shoes, if they start to wear down or break on one side take her to a foot specialist and talk to them about getting shoes specially made for her. Otherwise you'll go through more shoes than you want to. Nics’ , foot size is a 13 1/2 in kids but we go one size bigger because even though that is her shoe size she still says her feet feel "squashed" so we go with a 1 or 1 1/2 wide depending on the type of shoe. Payless is a good place to find decent shoes and Famous Footwear but we usually just stick to Payless.
A few of years ago Nic, would complain that her hands and feet hurt. She would cry and cry and just be in enormous amounts of pain it was really awful seeing her like that. But her hands and feet weren't growing and they were trying to. When she was 16 we noticed that her fingers were longer which shocked all of us because we were told that her growth plates were fusing together which would stop her fingers and toes from growing. I can't say much about her toes but her fingers a very long especially her middle fingers. She will come around us and say that one of her fingers hurts but it’s not as bad as it used to be now it’s just finger by finger. We tell her to rub her fingers or my mom will rub her fingers. When her hands and figures would start hurting and rubbing did not help much my mom would tell her to get her stress ball and work it until the pain stops. Usually that works faster than the rubbing and she feels like she is doing some of the work.
As far as puberty goes she has gone through it normally, the only thing that was a little bit different was that she did not get her first period until she was 15 but my mom was told that had more to do with how much she weighed at the time.

MOlaon hello . Thought I'd mention ive joined a facebook group for acrodysostosis . It would be good to have your experience .