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Alagille's Syndrome
Anyone out there with this diagnosis? I believe we may finally have found our answer to all of DD2's issues.
Tori 10.10.09 / Callie 9.14.10 /
Callie's Epilespy Journey
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Re: Alagille's Syndrome
Not that Dx, but my son has WilliamsSyndrome that was diagnosed because at 18 months he didn't walk, talk, or chew food. It was devastating. Those first few weeks were really tough. At the same time, it was also a bit of a relief at the same time. Finally there as a reason for all our struggles and all the "Have you tried 'xyz'" or "Maybe you shoud 'xyz'" comments/questions could finally stop!
Try to remember that not everything you read will apply to Callie. Mo studies out there are based on kiddos who didn't have the benefit of early Dx and Interventions. With each accomplishment Callie makes, you'll beam with a pride you can't imagine.
Be gentle with yourself. It may not seem like it now, but you were a happy family before the words Alagille Syndrome were part of your vocabulary, and you will be a happy family again - I promise.
I have a friend of a friend who's DD has Alagille's. She is 3 or 4 years old. PM me if you'd like to contact them with any questions.