no. This is the first tests they did for his hypotonia. We did just get him special braces for his feet, SureSteps. They are awesome and from the second he had them on I could notice a difference! But still doesn't help with the rest of the concerns. We also just found out he has low tone down his esophagus too. So he has to just drink extra liquids after eating to wash everything down.
They had thought it was the Congenital Myopathy but with these test results that kinda threw the Neurologist we are seeing for a loop, basically he has no idea... very frustrating. What are they testing yours for? Didn't know of any genetic testing that would answer what is going on.
I was frightened to, but now I've gotten to the point of just being so frustrated and doing more with the therapists than the dr's that I just look for my own answers and then take it to the dr's to get the testing done. I think they think its nothing to worry about but its not their kid they have to watch struggling with everything!
Does your son go to therapy? I would recommend it! The therapists are the ones who suggested the swallow test to find out about his esophagus, the braces to help him walk without always falling and hitting his head and things to help us help him at home. I appreciate the dr profession but sometimes they don't seem to have the answers I needed.
BTW I am so glad that someone else out there has a kid with this... well not glad, wish no one had to deal with it, but also that my kid isn't alone.... does that make sense? anyhow, hope to hear from you again soon!
My 11month old has the same labs & hypotonia. How old is your son? We will be doing genetic testing. We are very frightened. Did you already do any genetic tests?