Any other Parents with DiGeorge Syndrome kids on here?

Lynsey - posted on 11/23/2010 ( 4 moms have responded )

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Hello everyone! I have joined to see if there are any other parents on here with Children with DiGeorge syndrome- I am having a problem finding groups for my age group, and mom's I can relate to.. I enjoy hearing from others and their experiences - my daughter is one years old and was diagnoised at 5 weeks (already had 1 malrotation surgery at Sick Kids) although I do not fully believe what my Dr's are telling me in regards to issues we may have in the future... I would like to hear of anyone else's experiences- any tips for questions to be asking the dr's? Thanks!!!

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Kelli-Ann - posted on 01/06/2015

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my son is 15 years old and we having been living with DiGeorge his whole life. He was diagnosed when he was only a couple months old. He had tetrology of fallot with additional heart problems, a few surgeries, born with a small thymus, no anoids, immune deficiencies, speech delays, developmental delays, I can go on. I can share lots of experiences up until this point, and have lots of ideas for what to get your child involved in as early as possible (speech, OT, PT, funding etc) . I am also hoping to get in touch with someone who has an adult child with DiGeorge to know what struggles he is up against so I might be able to help him cope. Currently our biggest struggle is the developmental delays in school and am hoping for some ideas to help him at this point as the school can only do so much.

Tasbr - posted on 10/07/2013

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is any organization who took achild with degorge syndrome and heart probleams and grow uP in US?

Norma - posted on 08/12/2013

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Hi, I'm a parent of a DiGeorge baby well he is 4 years old but for me he is still my baby. He is my 3rd child and when he was born we found out he had multiple health issues. He had cornea opacification on both eyes one extra digit in each hand and on one of he's foot, he had 3 holes in his heart and he couldn't eat on he's own. He was hospitalized for three months during that time he had cornea transplant on both eyes, heart surgery, extra digits remove, and a feeding tube. He started rolling on he's own when he was 12 months, crawl 18 months and walked 24 months he is not talking yet and he is already 4 years. He is a healthy child but now that he's growing up its getting very difficult with he's behavior. He needs to be supervise at all times because he throws everything on his paths, climbs tables, hits himself or anybody around him. I have a feeling he has add or autism drs are not doing much right now they tell me he is still to young to find out but I'm in process of behavior therapy. I signed up here because I also need to learn from other parents who has DiGeorge child I want to help my son as much as I can we love him so much but it's getting very hard with him me and my family need a lot of help on how to educate my child for the best of him and my family. Any suggestions or tips on this syndrome will benefit me. Thanks

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