Hello! I decided to come out of lurkdom and introduce us!
My youngest son, Griffin, was diagnosed last week with PDDNOS. It's been a long road to that DX, though. I will try to make a very long story somewhat shorter...
Griffin's pregnancy, labor and birth were completely normal. The first night in the hospital, he latched on and was animated and awake. After that night, he became very lethargic and was unable to breastfeed so we had to start bottle-feeding him breastmilk. At four days of life, he began to have seizures and ended up in the NICU for 10 days. He was diagnosed with BINC (benign idiopathic neonatal convulsions) which basically means he had seizures and they don't know why. They did many tests and all but the EEG came out normal. The EEG was "sparky," so they placed him on phenobarbital. At three months of age, his follow-up EEG was normal so we began weaning him off of it.
At four months of age, the NICU sent an early intervention team to check on him and they were concerned about reflux, stiffening and strabismus. He was sent to a gastro-ped for the reflux, given glasses by a optha-ped and started PT/OT. He was very behind for all of the major physical milestones, but was generally a very smiley, sweet baby. A neurologist told us that he had hypotonia (low muscle tone).
His speech then became a concern. He seemed to have a desire to communicate, but it seemed to me that there was a disconnect there somewhere. Eventually, the therapists recommended a dev-ped and we were told over and over that he was testing at about a 30% dev delay. Because of his affectionate nature and constant desire for normal interaction and eye contact, we were told that he would not fit the autism spectrum but would probably be dx'd as mentally retarded with secondary autistic characteristics. He did, however, have sensory disorders at the time. He has minor transition issues, but nothing that really causes him to be a problem in public at this point...except for an irrational fear of water and haircuts.
More testing and a trip to a geneticist told us nothing. No one could find anything "wrong" with him. Our insurance changed recently and we have a new dev-ped that spent more than 10 minutes looking at him. She has concluded that he is not MR, but PDDNOS. She told us that MR is strictly an IQ dx and without an IQ test she would never dx that. She also noted a number of other characteristics that point right at PDDNOS...like potty-training issues, arm-flapping, rituals and repetition.
There's much more, but I'm sure I've bored you all to tears...you've all been there done that, huh? I just wanted to make sure that I introduced us with enough background to help for now.
I'm very interested to learn about:
1. Kindergarten (we are a year away thanks to his Nov birthday) and anything that will help us help him.
2. Also, we are interested to investigate whether or not we should try and have anymore children...we know no one has answers, but your opinions and experience would help greatly.
3. Finally, any help regarding helping siblings deal with this?
Nice to meet you all!
♂ Michael (08-02-01)
♂ Griffin (11-09-04) PDDNOS, Hypotonia, Strabismus
Edited 7/17/2009 10:57 pm ET by shelles_belles