Procedures

[Guest pandas16]

Has anyone who is an adult seriously looked into procedures like RTMS and deep brain stimulation to stop the misfiring that's going on in the brain? The autoimmune aspect is focused on a lot but there IS a chemical imbalance going on too. I'm not soo much pro drug antibiotic or any drug... but procedure I'm for. Some of the stories for deep brain stimulation for tourettes/ ocd are nothing short of amazing. I mean it's serious surely & should only be contemplated in the most severe cases.

 

Edit: I'm not there yet no where near there... still trying other options.. HOWEVER every problem is caused by some pathogen right whether Lyme or mutated strep or whatever. If Lyme/ cell wall deficient bacteria treatment takes 5-10 years... and all symptoms could disappear with one surgery, which way in the end is more logical? Even going the IVIG route.. IVIG every three months for the rest of your life or one surgery?

 

they're coming up with really amazing ways to fix chemical imbalances surgically.

 

idk just thinking.....

Edited August 15, 2011 by pandas16

[dcmom]

Pandas 16-

 

If my kids were adults, I would seriously push them to advocate for pex. For my girls, with pandas ocd, it has been a miraculous treatment. The difficulty for a child, is it has to be done through a central line, therefore anasthesia- and those two things create all the risk.

 

For an adult, they can do the pex outpatient, through regular IVs. It would not be painful, and not be risky. It brought both of my girls to their baseline.

 

It would take some doing to find a doc to do this for you- but it is what I would want (and hope for, if they continue to have issues) for my girls.

 

Just sayin

[dcmom]

Our insurance ultimately covered pex. We did have to appeal, but there is not that much work involved with that, just phone calls, esp if you can find a doc that will get on board. We were denied, but in the final appeal, were approved. I agree, it is stressful- but if you could find a doc to get the ball rolling, since it isn't an emergency, now might be the time to start working on it. Lots of kids are having pex at Georgetown- and I believe insurance is covering all of them.

 

The bill for pex was $30k- but my kids were in intensive care for 4 days, plus a central line and anesthesia. Since Georgetown was in network, the "negotiated rate" was $5k. Frankly, I was furious when I realized my insurance had even bothered to fight, when they only paid $5k. If you did it outpatient- the bill would not be more, and insurance might be more likely to approve.

 

I totally sympathize with your position, and realize as a young adult, who is sick, and planning for future, how overwhelming this must be. It was for me, but somehow as a mom you get energy and determination way beyond what you have ever had.

 

It is really tough. I think your first step would be to find a doc who would be on your side. Many hospitals in NJ do PEX, apparently if you could find a neuro (or maybe other doc) that would write the orders, you could start the insurance approval process. You could then insist on prior approval (if you wanted to be sure it was covered).

 

Finding the doc is the hardest and most important step. Not sure if you have any leads on that.