Friday, September 9, 2011

A Long Overdue Update...

First, my apologies for not posting an update earlier. I know many of you have been praying for our time in Maryland and patiently waiting to hear the outcome.

Our trip to Maryland went off without a hitch. It was a great experience and much better than I had ever hoped it could be. Everyone was very kind and compassionate (which has not always been our experience with hospitals). The accommodations there are fabulous, a real kid's paradise. The plane ride there and back was great. And the testing that they did on Mary to see if she qualifies for their study confirmed her diagnosis... well, kind of confirmed her diagnosis. They did agree that she is bipolar, but instead of the severe bipolar 1 diagnosis that she has been given by our p-doc, they said she was a less severe bipolar 2. The reason they believe that she is bipolar 2 instead of bipolar 1 is the level of mania that they have seen documented and described by us. In their opinion, she is hypo-manic instead of full blown manic. I disagree with that part of the diagnosis. She does suffer from hypo-manic episodes and most of her cycling has been more hypo-manic than full blown manic. But, I think that is because we are hyper vigilant in tweaking her medications when we see the mania approaching. We call the doctor if there are more than 2 nights in a row with little or no sleep. We track everything and know what time of month/year to be extra careful. We have her in therapy every week to help her learn what her triggers are and catch it before it becomes full blown mania.

Regardless of that difference in opinion, Mary does qualify for being part of their research study and she would love to participate. The other kids have been invited to participate as well, being siblings of a bipolar child. So... we are headed back up to Maryland the middle of October. We are excited to be part of the study and hope that in the long run it will benefit Mary and others who suffer with this disorder. Unfortunately we won't be getting the testing results as we had originally hoped for. Her data becomes part of a pool of data that is combined to study a collective group of kids. We will still probably need to go ahead and contact the local school system to have a full psych eval done in the near future. But there are so many positives to participating that we are still going to go ahead with it.