TES - E-Stim Issue

[admin]

We just learned that our insurance company just deny our request to have use the TES unit for my son. The reason was that TES has "unproven" evidence in the treatment of BPI.

We are thinking about appealing the insurance company decision. But what is puzzling is that our neurologist learned from Dr. Pape, the inventor of the TES unit, that TES has "very limited" use for BPI treatment.

Has anyone heard anything about this?
I also spoke to Christine, the nurse who works for Dr. pape in California. She said we could use it, it won't hurt.

I know doctors from Texax Children's Hospital prescribe TES all the time, and many people on this board are using it for kids with, or without surgery.

Now I am confused about the use of TES. I need to have some good information for the appeal. Please help, thanks to everyone!

Jenny

[francine]

Ok - here's my take on it. Within I'd say 6 weeks of Maia using TES fulltime at night, we saw a big change in her movement. What was more robotic became much more fluid. It was astonishing and it's continuing in that way.

We did the TES fulltime like that for a long time, but had to stop inbetween a few times for eczema breakouts. During which time might I add, I felt very guilty and was hoping and praying for the eczema to clear up really fast so that we could get back on track.

Over the summer, Maia had a VERY severe eczema breakout and we actually had to stop TES for the remainder of the summer. Then we went back on it when things cleared up and then she started having more and more serious eczema attacks. Everytime her skin would clear up we would rejoice and put it back on - even if only for a week at a time.

I had to rethink the goals for TES because of this.
Dr. Nath felt that the TES if used for 5-8 years would bring Maia about 25% additional recovery. Even though we were having these delays in TES usage, it occurred to me one evening that no matter how many days or hours the TES is working on her - even if it's for a moment, it's still VERY helpful because of what it's doing. It brings more circulation to area. So all that is trying to heal is being bathed in a lot of good blood and fluids which at night include growth hormones. So rather than looking for an outcome of a certain percentage or increase of a certain movement- we have removed the "pressure" and we now look at it as a wonderful healing tool no matter how long or often it's used. Am I making sense? I know that each time it's used, it's of benefit - I trust in this because I've seen the great difference in such a short time.

Now - just recently we started Maia using Protopic for her eczema and it has vitually cleared up about 80-90% of her eczema. So as soon as she is out of her capsulodesis splint, we will begin TES fulltime again.

I think the problem Dr. Pape faces with having to report success/failures is that how can one tell scientifically what's working and what's not.... each child is different, each injury is different, each surgical repair is different, each child's rate of recovery is different. So how can she really quantify what it's doing in the big picture.

I can tell you FOR SURE with 100% certainty that we all have seen this change to fluidity in motion with Maia. If anything else occurs however, we won't know if it's still recovery from primary or caused by the TES.

To us it is a very worthwhile project, worthwhile enough to pay out of pocket for it if we have to.

-francine

[admin]

I agree with Francine's conclusion that it is very difficult to quantify success with e-stim. However, we too have seen improvement from nighttime e-stim. In about 8 months we've logged 2300 hrs. Within weeks of beginning the e-stim we saw improvement in the fluidity of movement. This is a very long term committment; it becomes part of the nighttime routine. Can your bpi specialist write a letter attesting to the implications of success for a bpi injury? It is a means of keeping the muscle healthy until innervation is strong enough to work the muscle solo. It is noninvasive and painless. If you cannot convince the insurance co. to pick up the cost even after repeated appeals, perhaps you could do the payment plan, like a "rent-to-own" method. Even though the cost is steep (about $1200), over the period of time which is is used (5 years or more), I think it is a justifiable expense to further improve a child's outcome. Keep fighting the good fight!

[admin]

Thank you for your response.

Now my question is how to appeal? My primary physician is not going to appeal for us since he does not know anything about TES.

Did you guys appeal by yourself? Does that work?

Thanks for any suggestions.

Jenny

[francine]

I didn't have to appeal - we just got it...BUT on my website, there is wording that Leslie Mckibben gave me to use for my insurance company...

www.injurednewborn.com/maia/estim.html

look at the way bottom ok?

-francine

I did hear that many times they approve it AFTER the child already has it...

[admin]

I did have to appeal with my insurance company, I hired a patient advocate and she got my sons TES unit approved in two days. We have been using the unit for about two weeks now.

[admin]

I did have to appeal with my insurance company, I hired a patient advocate and she got my sons TES unit approved in two days. We have been using the unit for about two weeks now.

[admin]

Thanks, Francine. I will check the site out.

Jenny

[m&mmom]

Jenny,

We just spoke to our neurologist about this a few weeks ago. He will not perscribe the unit b/c he feels there's not enough out there to prove it works. We also spoke to our acupuncturist who said if you use e-stim the end result causes numbness in the nerves thus producing the opposite result desired.
Cindy

[francine]

acupuncturist is thinking about regular estim - NMES or FES....nightime TES is much different - it does not cause muscle contraction....

Tell your acupuncturist to look at www.tascnetwork.net and www.injurednewborn.com/maia/estim.html