Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Tuesday, November 24, 2009

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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.


At November 24, 2009 at 1:09 PM , Blogger Cyndi said...

Wow. My prayers are with you. Let me know if I can help you with anything! I know I'm far away, but if you think of anything, please ask!!

At November 24, 2009 at 8:08 PM , Blogger Pam, mom, honey, said...

I have a question, who is your insurance provider. and did they cover your Hbot. my dear best friend is trying everything to get it for her son with Autism and it is beyond expensive. She has actually looked into purchases one for her home. I know it is a little personal to ask a stranger about there insurance. I am really just curious to know how you got them to pay for it. her insurance will pay for the brain scans but not the HBOT.

At November 25, 2009 at 9:40 AM , Blogger Erin said...

Thanks Cyndi! I might take you up on that one day. Probably more just to hang out and go for chinese food but that's helping my sanity right?

Pam I'm trying to leave a comment on your blog but my computer is being dumb so hopefully you check back for a reply. Our insurance didn't cover it. We have tricare and since your military you probably know what they are like to deal with. Sometimes I think they are wonderful other times I'd like to ring their necks. They originally approved Hbot but then decided it was experimental for all reasons other than wound care. So they reversed their decision and made it policy for everyone. We did huge fundraisers in order to get the money we needed for it. Sorry I couldn't be more help. I wish your friend all the luck in the world and hope she can get some treatments for her child.

At November 25, 2009 at 6:56 PM , Blogger Emily said...

Oh my goodness! I popped on over to say I got your entries and I just read your post!


I can't even imagine the struggles you must face daily as a family. Poor little guy. I hope the surgery works!

At November 25, 2009 at 9:47 PM , Blogger Suzanne said...

Absolutely amazing, Erin! The things you've learned and the things you know. Incredible.

At November 26, 2009 at 7:59 AM , Blogger Erin said...

Suzanne - I know! It's crazy the "stuff" I've learned over the last two years. Never ever imagined that I'd be talking about DBS or Hbot. It's been a crazy ride that's for sure.

Emily - Thanks for stopping by! Your pictures are beautiful! You are very talented!

At November 27, 2009 at 3:04 PM , Blogger Windblown said...

All I can say is Wow! And all I can offer you, John, and the kids is our prayers. You are amazing to me Erin! I am so glad I can call you my friend. Colby is lucky to have you and John as his parents. What an awesome little boy you have. I know you know that if the Lord brings you to it he will most definitely bring you through it.


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