Neurologist Visit

When Joseph was originally diagnosed with autism in May, the Mind Institute wanted him to be evaluated for any relation between the reflux medication he was on when he was a baby and his diagnosis of autism. I never got a phone call and well life got busy and I forgot about it until last week when I pulled the report from the Mind Institute out to see how he has progressed and remembered. So Joseph's pediatrician's office worked really hard and called me yesterday to get him in this morning with a pediatric neurologist. Honestly, I know the only reason he got in so quickly was because yet again I had to make a formal complaint to have my voice heard.

Joseph and I met with Dr. Khan this morning, and he ruled out any effects that the reflux medication, reglan may have had on Joseph being autistic. Huge relief. He went on to really explain autism to me in a way I have never heard before and it was like it finally all clicked with me. He said that it is like a person with OCD, anxiety, depression, shy, etc but much more severe that it takes them to the level of being labeled or diagnosed with autism. Autism he went on to say is not what is causing Joseph to be delayed, not give us eye contact, non verbal, and drooling it is the label it gets but what we need to do is really find the cause of his symptoms. He did concur that Joseph is autistic but he has some extreme characteristics that really Joseph should not be doing at his age, such as his drawings (see below). He said Joseph is doing some things at a 4 and 5 year old level WOW and other things at 12 months and this is what gives him the diagnosis of autism as well as mixed developmental delay and like 3 other diagnosis I am losing track.

While we talked Joseph sat in the chair next to me playing word games on my IPhone and the doctor said, I have been watching him while we talked and he has not gotten 1 word wrong. (he was matching letters) this is just not something that is typical of a 2 year old at all, he is extremely smart. He said he really doesn't understand what the letters are but has memorized where they go. It actually is funny because this is exactly what is happening with ABA therapy, he is excelling so much he started phase 3A of PECS yesterday and mastered it by last night and is ready for phase 3B. The tutors said they have never in all their years of experience since a child progress as fast as Joseph. You can tell him to match the 2 red blocks and matches them or any other color. Just for the record I would like to say that he must get his smarts from his Mom ha ha.

As well he noted that Joseph had been drooling the entire time we were there and that too is not typical and said he does not feel it has anything to do with Joseph's autism diagnosis but that he felt Joseph is having small seizures possible at night. He said they are the kind of seizures you physically won't see but that something is going on. So he is ordering an EEG which will be us going in to the office hooking up a bunch of wires to Joseph's head and going home for the night and trying to keep the wires on his head all night long, this will be fun.

Lastly he said that a child just doesn't get autism, something is triggering it in the brain to not fully function correctly like a birth defect and that he is going to order a MRI of Joseph's brain to figure it out but warned me he will have to be sedated for that part. I asked him what would be the benefit because I don't want Joseph turning into a guinea pig for nothing. He told me there is so much that can be seen beyond looking for cancer or a tumor, they can see how his brain works and is functioning and possibly a reason for all of this.

So all in all it was a good appointment but really was not ready at all for the possibility of him having seizures and am so worried about him. I wish I could take a magic wand and fix him and make him all better, needless to say my heart is breaking again.

Jenn


Here are some of Joseph's drawings at 2 1/2 years old:

This one is "caterpillar and snail"

 This one is called "Sissy"

 This one is self portrait "Joe Joe"