My son was tested last week for Fragile X. We don’t know the results of the test yet. I never heard of Fragile X until 2 weeks ago when I was reading about the wrestler who killed his wife and son, who’s son they say had Fragile X. Out of curiosity I looked up the condition and it sounded a lot like my son. He is almost 6yrs old and was diagnosed with Hypotonic Cerebral Palsy last July. However, the MRI of his brain was “normal”. He has Sensory Defensiveness, and had significant oral motor and fine motor delays when he was younger. He threw up a lot cause he would choke and gag on his food. He still struggles with fine motor, and cannot write his name very well yet. He never wanted to color a picture or draw. He flaps his hands a lot and 90% of the time doesn’t even realize he’s doing it. He’s hyperactive and probably has ADHD, my husband has ADHD too. He has significant Hypotonia (so much that he was diagnosed with Hypotonic Cerebral Palsy, as I said before). His teachers and OT said that he has problems with the “pragmatics” of language. He always talked well to me and has a good vocabulary. He reached his gross motor milestones within normal range, so as his PT said, she can see why he “flew under the radar”. But his PT does think he has problems with “motor planning”. When he was smaller he would do funky things with his fingers, bend them in weird ways. And he’s had many sinus infections since birth, not so much ear infections though. And he doesn’t have large testes, but he’s only 5… I’ve read that is a sign after puberty, right? His teacher was thinking that he may have Aspergers but the Pediatric Neurologist that diagnosed him with HCP said that he does not have that nor Autism because he is too social. I’ve read that Fragile X kids are very social, so yet another sign to me…
My problem right now, is that nobody but me feels that there is a chance that this is what’s wrong with Lucas. My mother, mother-in-law and friends don’t think that’s what it is and that he’s fine. Also, if he does have it, why did I have to figure it out. You’d think that a pediatrician and one of the top Pediatric Neurologists in the Detroit area would be able to see all these signs!!!