Anyone's child been DXed with CHARGE syndrome

Kim - posted on 11/14/2008 ( 11 moms have responded )

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I was wondering if there is anyone out there with a child that has CHARGE syndrome? I had a daughter with this and I'm looking to contact moms on here?

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Melissa - posted on 09/03/2009

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Recently, the Perkins School for the Blind posted the first, to my knowledge, webcast on CHARGE Syndrome. Pamela Ryan is a great friend to families who have children with CHARGE Syndrome. As the Perkins School Psychologist, she offers an overview of the characteristic features of CHARGE Syndrome and discusses the very diverse ways these features may manifest themselves in children. She talks about some of the early medical complications that many children face and how these issues affect development and learning. It is very easy to watch, so please share with your medical and education teams to help them understand CHARGE and your family.



Watch it now – cut and paste this web address:

http://support.perkins.org/site/PageServ...

Melissa - posted on 09/03/2009

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my baby has charge and has not yet got to go home she is comeing home september 9th you can look her up and read what we have gone throw on www.caringbridge.com and put her name in like this alexyswaits i also have a movie about charge if you would like me to send it to you

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Vicky - posted on 12/28/2010

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I have a 2 year old with Charge and I am too looking to connect with other mom's with charge babies. Let me know if I can help you.

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We have another follow up in Boston with the genetcist in May. She has none of the CHARGE symptoms ie cardiac ,renal, and  etc that CHARGE stand for but has other random medical issues. She does have bilateral hemifacial microsomia, a shunt it her head, and jaw surgery to lengthen her jaw so we will wait and see. Keep me posted



 

Jana - posted on 03/29/2009

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My daughter has Charge syndrome too...they call her a charge baby, but we like to call her Marik :)

Jody - posted on 03/06/2009

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My 2 year old daughter has CHARGE.  It was a total shock, and quite a bit to handle for the first year or so, but she is doing well.  She has had 2 open heart surgeries, choanal atresia (nose) repair and has a g-tube. She is just learning to eat baby food by mouth.  She was strictly tube fed for the first year and a half. She has hearing problems, which we are trying to determine the route to take to help her with this.  She did not have any of the vision problems.  She still cannot walk, and really doesn't crawl much...but can get around great on one of those fisher price horse things on wheels.  But, all of these medical issues aside, she is a very bright little girl.  All of the deficiencies or delays are starting to catch up and she is just so amazing to me.   How old is your daughter?  What symptoms does she have, any surgeries?

Dorreen - posted on 01/20/2009

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my sons tests came back negative also but the Genetic Dr said he Clinically still has it, he has g-tube trach nissen, and everything CHARGE stands for, but blood work still comes back neg.

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They did genetic testing on my ally for that last year but it came back negative. Good luck and let me know how your daughter is doing. Ally has many medical challenges including a trach, g tube, shunt in her head etc... If you need a mom to chat with, Ally has had 15 surgerys. I am a mom and nurse at home. I also work on an OB unit as a nurse. She has bilateral hemifacial microsomia.

Dorreen - posted on 01/20/2009

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hi Kim , my son is 6 months old and has charge feel free to contact me any time . i am lookin for moms to chat with also

Luci - posted on 11/21/2008

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Hi Kim -- I don't have a child with CHARGE, but I've worked in Special Ed for a long time. I have a good friend who teaches at Perkins School for the Blind just outside Boston. She says the school has the largest population of kids with CHARGE syndrome in the country as far as she knows. Perhaps you could contact the school to see if they know of any support groups online, or in person in your area. Their site is at http://www.perkins.org/. I hope this is some help... Best of luck!

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