Sunday, February 28, 2010

Getting To The Bottom Of It

I have been convinced for some time that something else is going on with M. When I describe the regression over the past two years to doctors and professionals, they all agree that it does not make sense to have regressed so greatly after the age of four, and that the transition-though certainly hard on him-cannot be the only reason for all of this.

I was convinced last Spring that we'd find something in the panel of tests we did with the genetics team. He has so many features of fragile x, but alas, no answers there.

I switched to a new biomedical team last October and the developmental pediatrician I work with is a very thoughtful man who really listens to my concerns. Though he is a bit baffled by it all as well, he is totally open to and in agreement with pursuing all options to get to the bottom of this.

You may recall us venturing down the road of PANDAS. M had several bouts of strep throat this past year and always showed great improvement of skills and behaviors while on antibiotics. We drew ASO titers (blood testing for strep levels) and they were <6; thus in the normal range. My next question for the doctor was whether or not M could be having seizures without us realizing it. The answer was that this is absolutely possible. Yikes. We had a neurologist back on the mother ship that we were very displeased with. He spent very little time with us over a three year period, and basically dissuaded us from doing some of the bigger neurological tests because 'we probably wouldn't find anything.' A few days ago I met with a very different pediatric neurologist who within five minutes told me that we absolutely need to do an MRI and an EEG to rule out Landau Kleffner syndrome, which I had ironically discovered just the day before our appointment. This is a very rare syndrome, but at least we could treat him with anti-convulsants and possibly get back a little of the boy we seem to have lost.
We will also do another big blood draw to retest for some metabolic disorders as well as test M's thyroid levels. It is a strange thing to hope that they find something in at least one of these tests, but that is where I am these days...hoping to find an answer to SOMETHING.

And if they all come back negative, our next discussion will be along the lines of prescribing resperdal or abilify to M. I did not want to go down that path, but I feel like we have exhausted our options at this point. Even our developmental pediatrician--a man who fully believes in treating with vitamin supplements and diet, and who wrote a book about treating ADHD without drugs--suggested that this might be something M needs in order to lead a more fulfilling life. Sigh.

So hopefully we will be able to schedule these tests fairly quickly and with little to no gruff from the insurance company. I am not looking forward to the fact that we will have to use two different sedatives for the MRI and the EEG, so please keep M in your thoughts that he has no adverse reactions to either.

I will keep you posted.


Valerie Foley said...

Hey Deb,

I hope this road finds something for you too.

Having been down the Landau-Kleffner, GA1 testing route with Billy when he had Transverse Myelitis, I have a feeling where you are. Not fun, but hopeful. We're doing the ASOT now!

With names, you have some more wisdom about where and how to 'go'.

Looking forward to hearing what you discover.



sonidoinquieto said...

I will keep you and M in my prayers.