Share your story?

Well after Anette was born we did not know she was not like anormal child untill about 3 mths of age she got sent to a gastrology for her acid reflex since she was losisng weight spitting up.

Then at 5 mths old we found out she has SVT so got sent to a cardiology.
Then at 6 mths she was sent to a genetic doctor for all of her testing we did not have a nswer untills she turned 5 yrs old she is now 6 yrs old she has 1p36.
She has lots of seizures and many other medical conditions these are a few of them.
She has bene admitted int he hsopital as of april 7 and we are still here.

hi…
we are desperatly trying to learn more…my grandaughter is 10 mos old…
reflux…(i guess…she is vomiting at least once daily)…
there is just so so little any docs know about it…they are just guessing…
very very frustrating.