So What The Heck Is Wrong with This Kid?

The other day one of my friend's asked me what David's actual diagnosis was?  She wanted to know because this has been going on for over six weeks now. We have been in and out of ER's doctor's appointments, and hospitals; and all types of tests done, but what is actually wrong with David.  So here is what we know...

Last year David was diagnosed with Asperger's Syndrome which is an Autism Spectrum Disorder (ASD).  He is also diagnosed with ADHD.  Which, while symptoms are often seen in children which an ASD, typically and clinically an ASD and ADHD are not diagnosed together.  That said when David had his neuro-psychological done his ADHD scores where overwhelming and because his medication therapy was successful in treating and maintain his symptoms it was felt to be an appropriate diagnosis.

Since being transported for a possible seizure at the end of September, David has been diagnosed with epilepsy or a seizure disorder.  At this point we are continuing testing to try to "catch" a seizure or seizure activity because so far his EEG's have been within normal limits.

David has had seizures since he was six months old. At the time we thought that they had resolved themselves and then two years ago we went through a lengthy process of trying to identify a seizure after David had several vacant moments at school followed by exhaustion, and collapsing.  After several months we again thought that most of the issues were under control and in fact were hopeful that things would be even better controlled when he started Depakote for his behavioral issues. Unfortunately we have ended up where we are.

As for his current hospital stay, we are here because he had an allergic reaction/ Steven Johnson Syndrome reaction to his medication. Unfortunately, this type of reaction is extremely serious and can get worse very quickly. It can be scarring, disfiguring and even life threatening if not caught and treated quickly.  If you don't have a strong stomach, I highly recommend you DO NOT Google it.  You will be left with some very disturbing images.  Luckily both times we have faced this, we have caught it quickly and our doctors have been able to get it under control.

All of that said, I am extremely grateful for the team of doctors that we have treating David. They have been willing to work together despite different hospital affiliations, and different areas of practice.  They have been willing to deal with my sometimes daily calls.  They have called late in the evening following an ER visit just to "check in."  They have texted me and allowed me to text them with questions, concerns, and again to "check in" on how David is doing.  We have been incredibly blessed and I am so thankful for that.

I am also grateful to all of you, who have called, facebooked, emailed, texted, and messaged your well wishes, prayers, and concerns.  We appreciate your love and support.

Here is one of the happier pics I have of David during this

whole ordeal.  It was while we were at the pumpkin

patch and he was just having a great time.

I love that smile