Anyone up for a little Deep Brain Stimulation?
We are. Or at least we think we are. It's been interesting to go through a process of decision with my husband over the last few months. This will be a long post so I should probably start at the beginning or at least at the beginning of this decision making process. After Colby had his stroke we were told he basically had one year to make improvements. That after a year he wouldn't progress anymore and what ever state he was in would just be Colby's new reality. So I got a little frantic searching for answers. I kind of felt like we had a ticking bomb that we had to diffuse before we hit that year. So during this year I had seen some things about deep brain stimulation or DBS. Most everything I read said it was for primary dystonia and not secondary which is what Colby has.
So I focused on things that would work for him. We did 80 rounds of Hyperbaric oxygen treatment or Hbot. That helped him emotionally. He was like a different kid just one week into the start of that. We did Cranial Sacral therapy which helped him sleep just a few minutes longer each night, we did Botox and Phenol injections which help a little, and we played with medications, lots of different medications. The year mark came and went and he improved more in the second year than the first. He is our backwards boy.
Then this last September while being evaluated for Botox and Phenol shot positions the Rehab doctor got all excited! There was a new doctor in town and we needed to go see her right away. So I called the next day and turns out she was really new like 2 weeks new. She hadn't even figured out what days she would be working yet so they said they would call us when they had the October schedule opened up. I figured we'd hear back in a week or so and that it would be at least a month away. I mean it's hard to get into neurologists these days! They called back the next day and wanted to know if we could come in two days later! So off we went down to Salt Lake City.
Dr. S spent an hour and a half going over DBS with us. She video taped Colby and went over everything. This is what we learned. It is not FDA approved for kids under 7. She didn't know if our insurance would cover it. She didn't know if the neurosurgeon would operate on him. He does adults not peds. She didn't know if a study could be set up. She didn't know if we could expect it to help him because it's never been done on a 4 year old for secondary dystonia. She didn't know if the area of Colby's brain that needs to be alive was even alive and could be stimulated with the DBS. ....... You get the idea. There was a lot we didn't know. The one thing she said that John and I both agreed on was that we won't know if it will help him until it's done but there is a chance that it can help him so she feels morally and ethically responsible to provide it for him in the chance that it can make his life a better life.
So we left with a lot of questions. We had lunch with my wonderful friend Sara and drove home full of confusion. We talked about it. How do you subject your kid to an experiment basically is what we discussed. With out knowing what will happen or if it will even help. We did know that it does help with Parkinson's and with Dystonia. There is some evidence that it does help with secondary Dystonia in adults not as dramatic but still helpful,and that the younger you receive the procedure the more it helps.
Thursday night the doctor called us. She had gotten his MRI and looked it over. Good news. Great news actually. The area is alive and well! She spoke with the neurosurgeon. He feels that it would be a good idea to go forward with this. Now it is being reviewed by an ethics committee. Standard procedure for when something is not FDA approved. Once that happens we will need to go down and have Colby evaluated again without medication and after the Botox and Phenol have worn off. That is not going to be a fun drive to the doctors office. It will be painful for Colby as his muscles spasms will be in full uncontrolled force. It will be awful for me because my child will be screaming in pain and it's something I could help him with. But to find the most precise area we must see what his body really does not masked by medication. After that he will need to be evaluated at the gait assessment lab at Shriners hospital. Next comes a more specific MRI with special dye to pinpoint the exact location. Then we will meet with the neurosurgeon to make the final decision and schedule surgery. We're looking at another 3 to 6 months minimum. Then because it's secondary Dystonia it may take 12-18 months to see the effects of the surgery. So the decisions we make today might not even have results until sometime in 2011. Insane.
The longer we talk about this and research it the more we also feel an obligation to Colby. This will be a long process. It might not work. We are told to have no expectations for the surgery. But if we don't do it how will we know what could have been. We won't and so because we felt peaceful after discussing our options and making the decision to move forward we are confident that this is an experience we all need to go through and for now that is enough.