Re: My nephew is special needs
I just want to provide an update. I hope somebody reads this one day and can relate or offer some advice. The doctor's still do not know what is wrong with my nephew.
My nephew is now 11 months old and still has not been diagnosed with anything. Genetic tests, blood tests, ERG, EEG, MRI's, MRS, CAT scans, Spinal MRI, etc. and nothing! The doctor's do think he has a vision problem called CVI. However, they are still not sure if he can see at all and have not formally diagnosed him with anything.
Here are some other characteristics:
-floppy head that always is looking up (even though he cannot see).
-eyes appear flat, back of head flat
-His legs do not function and he has no muscle power, he doesn't stand, no weight on legs
-His body is like a sack of potatoes
-Feet do not appear to be growing and are flat and pointed out
-Does not talk, but does babble.
-He can hear and likes to be sung to.
-is now having problems with eating, already has reflux
-still cries a lot - gets overstimulated easily, obviously because he cannot see
-born with Bell's Palsy
He now receives several therapies from the local IU and will also start feeding therapy soon. He is long and heavy (25 lbs.) but still doesn't eat all that well.
If anyone knows of anyone else going through this, please speak up. I would love to hear your story. My nephew's symptoms seem similar to those with Cerebral Palsy, but the doc's said they don't think that this is the case.
"There's a big difference in playing the victim than in causing your own personal drama." -BK