Short Term Memory Loss

When we received Caleb's Childhood Disintegrative Disorder diagnosis in January of 2010, we had numerous questions.  The most important of which was, "What caused this?"  "How far is he going to regress?"  Well, no one can really give us answers to those questions.  There is not a lot of information regarding Childhood Disintegrative Disorder.

When I took Caleb to the pediatric eye specialist earlier this month, I had taken a copy of the Neuropsych evaluation so that he could review it and he asked me, "Is this on the spectrum?"  I told him yes, that it was a very rare form.  He said that in the 12 years he'd been practicing, he had never heard of it.  Great!  The good news and not so good news was, he didn't see anything in Caleb's eye exam that he would think would be an indication of the reason this has developed.

Now, though, over this summer, a much bigger question has arisen.  "Why is Caleb having so many short term memory losses?"  Something could just happen and you ask Caleb about it and he truly does not remember.

Earlier today I was trying to lie down and rest as I wasn't feeling very well and Caleb came in in just his underwear.  I asked him wear his shorts were and he said he didn't know.   I told him he needed to go to his room and put some shorts on.  He came in a few minutes later and was still in his underwear.   I told him again he needed to put shorts on.  That has just moved up to the top of the list of our questions!

Unfortunately, we don't go back to the geneticist until October 17th.  I will bring this up to Caleb's neurologist when we go in a couple of weeks.  I'm also going to try to talk to his developmental pediatrician when I take Steven for his appointment in October and see if she wants to see him again.  We were going to make that determination after we had seen the geneticist, but that's still ongoing and we're not sure what he's going to recommend when we go back. So many questions and so few answers!!!!

Tony and I have talked numerous times to see if we should contact Mayo Clinic and see if they might have any insight.  I think it may be time to head down that road!!!