Tuesday, March 30, 2010

The Continuing Journey

It's been a while since I gave an update about David. That's because there really hasn't been much to say. But before I go any further, I want to thank all of you who sent emails and Facebook messages when I sent out a prayer request the other day. It really means so much knowing that there are so many out there who really care about David.

Now on to the latest update.
Last Friday the school called and said David had a seizure. Now I've been told that a "Dystonic Storm" looks like a seizure so I assumed that's what it probably was until they described it. So it appears that he really did have one that lasted about 45 seconds. Dr. Ledoux says that it is not uncommon for people who have had brain surgery to have seizures at some point. So on Wed. we will take him for some tests to see if we can come any closer to finding out if he is having seizures and what could be the cause. It looks like David will need to be going on meds for seizures. I hate to give him another medicine (that will make 5) but Dr. Ledoux assured us that they won't conflict.

In spite of this new development, David continues to be his usual happy and laid back self. We haven't seen any real benefit yet but the setting and voltage changes have been ever so slight. Being on the internet support group for Dystonia has really helped me realize how slow the process can be and that, once again, patience is a virtue!

Although we are looking for and praying for huge benefits, we are learning that, at the same time, there could be other side effects and developments that aren't so desirable. I have met some very dear people who suffer greatly from a number of issues with Dystonia, and some may be even from the DBS. The issues I've heard about are swallowing issues (to the point of aspiration pneumonia in some cases!), digestion (where some have needed a feeding tube), and more difficulty with speech. My prayer, of course, is that David's swallowing difficulties won't get any worse and that they will get better. I would ask you to pray for him in this "journey" that he will not develop these negative issues and that we will start to see some positive results in the coming months.

Once again, thank you so much for your thoughts and prayers!