22q.11 deletion (Di George Syndrome)

[popsybelle]

Hi i have an 8 month old girl who has been diagnosed with 22q.11 deletion. all the stuff i have read about it is doom and gloom and its really freaking me out. She had feeding problems 4oz took 2 hours and then she had surgery as she had a right aortic arch, with a vascular ring which was compressing on her osopheagus and wind pipe, this was ligated at 4 months and she has been feeding well since - loves her solids. She is really behind physically, doesn't roll over and is still struggling to sit but i'm not worried about that.
What i really want to know is does anyone have a child with Di George that is coping normally? i would love to hear from anyone who had experience with this.

a friends daughter has di george She's in main stream school. She was tube fed as a baby and had significant developmental delay, particularly delayed speech and gross motor skills. Gradually she caught up more and more can't say she is without problems but she manages very well on the whole, she's mobile and chatters away. Every child is an individual even those with the same conditions can vary hugely. I can only guess at how hard it is but try to stay positive.

I think you may get some more answers on the special needs forum.

My best friends girl has di george she's nearly 3, she's an amazing little girl. And really not different from my 3 year old, does all the things he does. This may change in the future but up to now she's no different.

What do you mean coping normally?

As poster above said even children with same condition vary so much.

How are you coping? Will your dd need any further surgery?

hi

DS had a vascular ring (double aortic arch), so I know about that, although he does not have DiGeorge. Probably not so much help to you, rhough I did read a bit about DiGeorge as I know there can be an association with vascular rings. I'm pretty sure there are support groups specific to it that would be of help to you. Like all syndromes though I guess it is difficult to say at this stage how much your daughter will be affected. It is great that they found the vascular ring and divided it early. x

Hi I have a 3 year old DD with digeorge and pulmonary atresia with VSD, it's well worth having a look at maxappeal - they're the main uk support network, their Facebook page is a good place to put any questions you may have. My DD is currently achieving at a normal level, however it's taken some work, they're all different and heart issues may slow development too if they haven't been resolved. I'm sorry, it's a hard slog and sometimes it feels too difficult. It is worth it, promise. If you have any question please ask, the condition varies hugely, you should be getting various tests done, have you seen a geneticist? They seem to be the best place to start co-ordinating things. Also try not to read too much, it'll just make you cry.

have you tried the max appeal? www.maxappeal.org.uk/

Hi. We have a now 14 year old daughter who is doing really well. She was diagnosed after a few days with a heart problem. WE have been very luck as whilst there may be more to come she is developing very well.

Mike