United Brachial Plexus Network

I was hoping that I could find some more information about E-Stim. What age is it recommended for, does it work, etc. Anyone's experiences would be great. Hannah turns two this month and today we were told we should start E-Stim on her bicep and the rhomboid (spelling - the muscle between her shoulder blades).

Thanks,

Lisa

My son Zak has used the E-Stem since he was 3 months old. It has not benefitted him that much. He did have pain with it everytime, and discomfort. Each child is different, so it really would'nt matter. You could try it and see how it goes for you.

Lisa- here's a page...
http://www.injurednewborn.com/maia/estim.html

Maia has been doing TES for 3 years at night - and it's been great.

We are just about to start doing NMES - so I can't give you any clues about that yet. We also just got the BMR Neurotech (www.mayatek.com) and we were able to get it half price by paying cash (and getting insurance to reimuburse us) versus having the insurance pay them for it.

-francine

We have been doing NMES for about 6 mos. Good results, nothing dramatic, but i can see a difference. Rosalynn was about 2 1/2 by the time we got started, but the docs reccomended it about a year earlier. We had problems finding a therapist knowledgeable about it and then getting it through our insurance. They ended up paying for 80% of machine and they cover all but $20 of replacment electrodes and leads. We cna write the rest off under our section 125, including batteries. Hope this helps.

Lisa,

We've used NMES for our daughter since she was about 19 months old. It was recommended a little earlier but we decided to wait until she was older than 18 months. We use the BMR NT2000 and my daughter tolerates it really well. We have used it on her tricep, bicep, back (for scapula stabilization), and on her forearm (for wrist extension). We have definitely seen an improvement because after the mod quad surgery my daughter's tricep was weak and she couldn't bear weight on her arm. After using the e-stim she could and her arm doesn't buckle anymore. Also, her bicep bulked up so we had to stop using it on that! I think it is definitely a useful tool to have access to.

I'm glad you brought this up. We were just given a script to get a NMES home unit, we've only been doing it 2x a week in OT (my son is 3). As for TES, my physical medicine dr. said that statistics have not proven that nightly e-stim works. So with her statement, I don't beleive that she would help us get this unit. Any moms out there know for sure that TES is working for thier children? Just wondering, not trying to start a debate.

Tammie - I have the physical proof. When Maia does not to TES she has lymphedema in her arm - the fluids don't circulate and her left arm because larger and more pained than her right arm. When she DOES to TES - she has no lymphedema issues. You actually see the size of her arm change overnight to less swollen -with the TES.

That's all TES is supposed to do - increase circulation (which helps in a list of ways). It's the increased circulation that feeds the muscles and the bones with blood and the growth hormones tha get released at night (when the child is asleep and everything is relaxed anyway).

I have said for a long time that I believe that Maia will probalby use TES (or something that works just like it) on and off for the rest of her life.

Tammie,
You must have been reading my mind. I was thinking the exact same thing. There are many doctors and many bpi specialist doctors who are not at all enthused by the results of TES use. Many do not feel any results will be long lasting. When the unit is not used, the progress is lost, or so they think. Many claim (even excellent bpi doctors) that there is no research or study which supports such claims and that the research available out there supports just the opposite.

Unfortunately, I don't think there is much proven at all with bpi's. I would love to just believe what I hear from a few parents but the truth is with this injury it is very hard to truly decipher. Is it the TES, the therapy, post surgery results, changes with growth, the way a particular child's body may respond to TES, etc.? There are just so many confounding variables.

An example of this confusing bpi stuff is found in my child's case where we had taped some. About 4 or so months after surgery, the area around the scapula has gotten much, much better. Since it is right in the area where we have traditionally taped I would have believed that the taping was a big part of the success. I only know it was not because I didn't tape post surgery, but I can guarantee you if I had continued to tape I would have been convinced that indeed it was the taping that lead to better stabilization of the scapula, less winging, increase muscle strength and bulk, etc. I would have been completely inaccurate, although I would have believed it with my heart. Just such complicated stuff. Same with surgery too. If you do a surgery you attribute success to the surgery. Some actually do not choose to follow surgical recommendations and those parents first hand see what progress occurred overtime without surgical intervention. They may attribute success to giving the body more time to heal on its own, alternative treatment modalities, a very aggressive therapy regime, etc. Also some of those who do surgery have no idea what to compare the outcome to, since they have no true idea what the outcome would have been if they would have denied the surgery. And vice versa for those opting no surgery, what improvements would surgery have brought compared to no surgery. Okay, I am getting way to philosophical here. Just some food for thought or confusion any way. And you were concerned about starting something.

I am really hoping for some published research in the near future to help clarify this issue. I would hate to put my child through all of this every night for no results or results that don't hold overtime, but just as much I hate the thought of missing a possible opportunity to help my child.

I think that doctors should support us regardless of their personal opinion. May sound crazy, but I do. If they don't feel it hurts and they can't promise in writing that it certainly will not help, than they should support us if we choose to use it.

And previous poster, you are not starting anything, so please don't worry. I may be but you are not. I like to think that this board is full of mature, understanding and supportive individuals who respect possible differing opinions, doubts, and questions. It is healthy to express concerns, to question and to learn from one another. And although some may seem to have the answers, the truth is at this point in time, no one really does.

P.S.
So sorry moderators. I have seen many guest posts from different posters lately, for whatever reason that may be. As far as my guest posting goes, I must look out for my child's best interest due to current circumstances, along with other guest posters I know as well. This will not continue for too much longer. Thanks for your understanding.

So much to consider. Michael has been using e-stem during his OT therapy for 1 yr.(He goes once a week) He is 21 months and very tall for his age. Today at OT we measured his arms. His ROBPI arm is short by 3cms. It was recommended due to his size we start doing the night time TES 6 days a week 6/12 hrs a night.
Over the past yr. we have seen the e-stem stimulate his triceps to move both when he has it on and when he doesn't have it on. We are now working on the biceps, wrist and fingers. It is hard to say if 1 specific action/treatment is attributable to change. However, when we as parents only have a short time to make decisions less we miss the opportunity. We make decisions with as much information as we can.
Good luck.
Michael's mommie