I have a 20 month old with hypotonia. He was born 10weeks premature, had severe reflux, constipation for a year. once he started solids both of those issues disappeared. He has PT and OT once a week since his first birthday. he sat independently at 9 months. crawled at 15 months. cruising while holding furniture at 19 months. but is still unstable. His pediatrician upon my begging, finally agreed to "look into his issues" at his 18 month appointment, ordered a hip x-ray, and after that came back normal now wants me to believe everything will work out fine. I don't know where to go from here. I saw a pediatric neurologist....and he couldn't point out anything obvious. He order genetic testing. When I went to have my son's blood drawn, the stupid tech could get the right vein and poked my baby 3 times all while he was screaming and crying. finally when he did get teh vein, there wasn't enough blood coming out! basically we couldn't do the test because the technician couldn't use proper blood drawing technique. I haven't gone back since.
My son was premature, as a result spent a month in the NICU with various tests, pokes (blood glucose tests every day), painful experiences everyday in the beginning of his life. According to my PT, those experiences have made him hypersensitive to touch, extremely afraid, and may be underlying his obvious desire to sit still and never get out of his comfort zone. After hearing all this, to be honest, I don't want to find out the underlying diagnosis and put him through all the pokes, x-rays, unnecessary radiation exposure, tedious doctor's visits IF IT WON'T BENEFIT HIS CONDITION IN THE END.
It seems that there are supplements and medication for children with mitochondrial issues that appear to help. This makes me want to rule that out even if it mean painful blood draws and a screaming hurt crying toddler all day.
What about genetic testing? Besides peace of mind upon having a diagnosis, is there any actual medication/supplementation/therapeutic benefit that you gained from having a genetic dx? I hate putting his through this. He begs and screams and cries for help and I think, if after alll this testing the only answer is going to be to get all the OT and PT possible, we are already doing that! So what's the use?
It really depends on the genetic issue as to what therapies are available. My son has a deletion at 16p11.2 which has given us an understanding of his delays and based on his deletion, we are able to get him the services he needs.
One thing you may want to look into for the hypotonia is therapeutic riding and/or hippotherapy. My son has low muscle tone and started therapeutic riding about a year and a half ago. The difference in his tone, strength and even behavior is amazing. OT and PT can also help with low tone.
I'd see if you can get him in to see a developmental pediatrician (if you are the Phila area, PM me and I'll get you my son's DP's info). I've found that using our local children's hospital has been great because they are used to working with kids (blood draws not a big issue).
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