Hello all We are currently waiting to see the geneticist and to have tested done on me and and my husband. Ali is a twin and his twin sister doesn't have the chromosome deletion. Ali suffers from tonic seizures which lead his neurologists to do genetics testing .

Hii Im new to thos as well. Like you we are waiting for myself and gusband to be tested and our son.. Our Daughter Madelynn has the syndrome. But she does not have seizures. She has alot of other issues but fortunately not that. I mean im new too so i dont know tobmuch just what ive read and been told. But i can tell you what ive been threw with her and all that. Zhe just got diagnosed on Friday. Welcome though.

Thanks for your reply I'm still confused by all of this because Ali doesn't have all other things that children with this syndrome have so I am still in the dark. I'm still waiting on an appointment I will keep you all posted once I know more

From what my geneticists explained is that its very different with different breaking points. And that some people go there hole life with out knowing that they have it because they only have one of the characteristics of the syndrome. It is all confusing!

That makes this even more confusing

Hi! My son's break is at the 4q34.3 to 35.2 - so there at 54 genes involved for him. Unfortunately, the doctors don't seem to know what those ones do. The positioning of his break, towards the end of the 4q, means that his symptomology is comparatively mild, for which we are eternally grateful. But the truth seems to be that each child is different, and while commonalities exist, it really does feel like we are each battling something different. Hope you are able to get your answers quickly. It took about 6-weeks after my son was tested before we got an answer.