United Brachial Plexus Network

Our OT has suggested both for our daughter. I am not completely clear on how either works and would appreciate any information and/or personal experiences.

These are two sites for a good explanation:

http://www.injurednewborn.com/maia/estim.html

http://www.tascnetwork.net/tesinbpi.asp

We are actually going to learn estim for our son this weekend...I don't know about contraint therapy.

Lexi (mom to Jason, lobpi 13 months)

From the injurednewborn website:

"If you use the NMES machine at night - you risk the safety of your child. If the child pees in bed and it hits the unit - a fire can happen."

This is absolutely NOT TRUE. The NT2000 is an FDA approved portable stimulator and is subject to safety requirements, one of which is that something like this cannot happen. The NT2000, along with the NT2000-TES (which appears to be just an NT2000 minus the programmer portion) and all other portable stimulators are subject to the *same* safety tests and protocols. You shouldn't do NMES for extended periods, such as overnight, but that is very different than saying you might kill the child.

There are quite a number of statements regarding e-stim that are not universally believed or scientifically proven on this website. Please be careful and note that private websites are not governed by the FDA.

Kate

Brittney used the e-stim for a while - we bought one and still have it. Personally I did not see any difference in her abilities after using it - except she'd seem stronger in her arm for an hour or so afterwards but then the strength would go away, but that may not be true for all. E-stim seemed 'temporary' in our case - no long term benefits. My daughter really did not like it at all (she was about 4 - 5 years old at the time) and I also felt that it wasn't helpful (just our experience). Other things that we did like swimming and playing seemed to be more productive than having her hooked up to wires.

As far as constraint I think that would frustrate the child and they might feel helpless. To me, encouraging use of the arm is a better way and there are so many ways to encourage the arm to get stronger. Constraint seems harsh to me, and the child might not understand why you'd do that to them..... Just my opinion again,
Christy

Every piece of information on the estim page
http://www.injurednewborn.com/maia/estim.html comes from sources including websites, texts, classes taken, lectures attended, direct communication with a multitude of doctors and therapists trained in electrical stimulation. The page itself was read and approved of by a number of doctors. One doctor (not bpi related) who does electrical stimulation for a variety of populations hands this out to his patients. One electrical stimulation class teacher uses my page in her course documentation and one specialty doctor used it in the documentation for a conference.

I do agree that since this page was was written years ago so there may be some things that need to be updated. For example, I just recently learned from another parent that the wires being sold with the NT2000 units have been remanufactured and the color codes are a bit different. When my own set of wires comes and I read the instructional sheet, I'll be able to update the page with that information.

The notice of the threat of fire/burns came to me from three prominent medical professionals, from one class I took, from the manufacturer of the unit, the distributor of the unit, the manufacturer of the electrodes and even from the manufacturer of the electrode glue.

Even if I heard the threat of fire/burns from ONE person, I still would have listed it as such. A child should not be sleeping with a NT2000 NMES unit for that reason and MANY other reasons. This is why the NT2000 TES unit was created - for safety for the children.

Any person reading this post should NOT trust Kate and should not trust ME as the end all of this conversation. Neither of us are medical doctors. You MUST take your questions about electrical stimulation to your physicians, to your specialists, to your therapists who are trained in this and have experience with this and to the manufacturers.

If anyone can provide me with authorized written proof from the manufacturer that fire is not a threat with the NT2000 NMES unit, then I will gladly modify the page. Until then, the safety warning about fire with the NMES unit will remain.

A reminder that there are notices all over injurednewborn.com that state that the site is for educational purposes only and that one must seek advice from their doctors. I wrote the site in its entirety and I am NOT a doctor. I am just any other bpi mom. As a matter of fact, you can go to that page and read the very first paragraph which states,

"This information is educational only. Please seek the advice of your specialist for further information, prescription and support."

If anyone wants to continue this conversation, please feel free to do so in private email - francine@injurednewborn.com.

I have found injurednewborn to be an incredibly well-researched and helpful website. As Francine has said, she's never claimed to be a doctor and always refers people to medical professionals. And not once have I found a reference to e-stim killing children!

Francine, thank you for all of your great research and helpful info. We've benefited tremendously from it, as have hundreds of other families.

Janet

Everyone should note that opinions on this website as articulated by "authoritative sounding" posters are also not governed by the FDA.

Will

I e-mailed you!!

I hope you get some good feed back!

Many Blessings,
Kristie

Oh no, I hope that this is not turning into another " go around". Can't everyone involved remember the saying, " Do unto others as------------. Francine's website has and continues to be as helpful as any out there with carefully researched and documented info. Thanks, Francine. Also, hopefully more posters can help answer the original posters question. Help was asked for and hopefully will be received.Peace, Lou

Thank you so much for your reply, Francine. I usually stay away from posts which are written only to provoke anger, but I cannot ignore this one. Please know that you are a well respected member of the Brachial Plexus community and most of us recognize and appreciate the work you do to help our children.
People who show repect to others, earn respect from others. People who do not respect others, earn nothing.