TCH and TES

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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marymom
Posts: 692
Joined: Mon Nov 05, 2001 5:05 pm
Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
Location: Fort Pierce, FL

Re: TCH and TES

Post by marymom »

I believe Grossman in Miami has a therapist Lorna Ramos who did a study on it a few years ago- at that time TCH was still against using it on younger patients(under 3) but I believe thay have now changed that opinion and are doing their own studies too- why dont you look on the TES web site? (don't they have one?)Sometimes when you use a particular institution rather than the actual therapy, other ...professionals(an I use the term loosely mindyou) tend to get ratty- it has been my personal experience they all seem to get their feathers ruffled when you say well so and so does it this way - youd think grown men/women, ahhhh but the nature of the beast-
Interesting thoughts following X's institutionalization (lack of use/therapy I assume you mean) affecting fnction, Ill be reading your posts,
How is the little sweetie anyways? Is she doing well emotionally? That will probably have a huge affect on how she chooses to work on her arm maybe?
blessing blossoms-m
LeeAnne
Posts: 538
Joined: Fri May 10, 2002 8:10 pm

Re: TCH and TES

Post by LeeAnne »

If you go to www.mayatek.com you can print up all kinds of info about TES and effects with BPI.Mayatek is the company that makes the machines. I printed alot of this and sent it to my insurance company along with the Doctors appeal and got the TES machine paid for eventually. Hope this will help educate you and you can pass this infop along to the doc there.
francine
Posts: 3656
Joined: Mon Nov 05, 2001 12:52 pm

Re: TCH and TES

Post by francine »

Hi

here's more stuff on TES

http://www.tascnetwork.net
this is the group that Dr. Karen Pape established - she is the inventor of TES and the machine that is now being manufactured by BMR and sold by Mayatek - which by the way is the ONLY TES machine FDA approved for nighttime use in children.

also - here's this
http://www.injurednewborn.com/maia/estim.html

hope this is helpful,
francine

ps - the ONLY reason TES is not done on very young children is because there is a specific minimum amount of space needed inbetween the electrodes and on younger children there just isn't that amount of space.

The results from using TES are very positive.
francine
Posts: 3656
Joined: Mon Nov 05, 2001 12:52 pm

Re: TCH and TES

Post by francine »

yes TES is being recommended by TCH. I think they are involved in a study actually (but not sure about that)...I know that Leslie Mckibben (lmpt@worldnet.att.net) is involved in a study - she is a PT in Melbourne Florida and is also an advanced TES teacher.

Your medical people are not impressed? I can tell you personally that at 6 weeks following TES startup Maia had fluidity of motion - it was very surprising. A once robotic moving arm was moving and gliding...it's hard to explain but it brought tears to both my eyes and her therapists eyes once we realized it.

I sat in on a TES class (only because I coordinated the class) and saw video after video after video of children and results from TES. It was quite extraordinary.

I suggest that you get your doctors in touch with Dr. Karen Pape - the inventor of this unit and have them get information directly from her and from her organization the Tascnetwork.

http://www.tascnetwork.net
the 800 number on that site will get you to Wing Lam who is Dr. Pape's assistant.

A couple of years ago I was VERY against doing e-stim at night. It was because of my training in meridian theory and how the body's energy regroups at night. Then we were told to begin this on Maia and I just cringed at the thought of tying a child up to an electrical box to have her SLEEP with it no less! I thought what will this do to her internal energy - will this create a cancer situation and more... I asked a couple of very well known acupuncturists / healers about this and they said that I should trust that it won't harm but it will do good. So I put my heart into it - with positive energy (even though I was scared) and we've been doing it on and off for the last two years. I believe it is wonderful. She sleeps better with it on. I believe it has helped her in many ways - with sensory issues, etc. I look at it this way - there are times when we can't do it for long periods of time because of an eczema breakout - but every day that she gets her TES, she is getting increased circulation to her arm, she is getting stimulated in terms of sensory stuff, and she's getting a double dose of growth hormones to her arm. What can be wrong with that? Personally I think that TES will probably be something she will be doing on and off for the rest of her life.

anyway - good luck and I hope that you can get in touch with Dr. Pape.

-francine
SandyR
Posts: 2
Joined: Tue Jun 25, 2002 8:09 pm

Re: TCH and TES

Post by SandyR »

My son, Zac (14), was involved in a 4-wheeling/van accident 10/20/02. Started use of TES machine on Friday. Praying for bicept movement through use of this machine. So glad to have found this site! Will re-post with results of TES.
TNT1999
Posts: 1064
Joined: Thu Nov 08, 2001 5:54 pm

Re: TCH and TES

Post by TNT1999 »

Hi, Have you considered sending a videotape of her to TCH? I think it'd be a great way to get their opinion. We go to TCH and they have recommended TES for Nicole. She used it for 5 months last year (Jul-Dec) and stopped for surgery. As others have observed, I believe it helped her to bend her arm with more fluidity (word?). We recently tried starting up again, but have had some difficulty with painful tape removal and are going to try a different way of keeping the electrodes on her back. I do think it helped Nicole, but it could've also been timing of post-primary and Mod Quad returns as well. (I never really care what the sources of recovery are, we just take what we can get! LOL!) So, anyway, I believe that TES helped Nicole. Will it help Xiaoling? I don't know. BTW, just b/c the TCH team are world leaders in treating BPIs doesn't mean that the Australian group will care about TCH's opinions. Often dr's don't want to admit to agreeing with others' opinions. I would take Francine's suggestion in getting info. more directly from Dr. Pape. I definitely agree with you that Xiaoling's background must have some impact on her recovery and it's not a clear cut case that can be treated based on physical exam only. Have you considered having an EMG done to determine the true extent of the injury? Of course, you'd have to find someone highly skilled in this area and whom you'd really trust. Aside from her arm, how is Xiaoling doing? I hope she's settling in and adjusting well. Take care. -Tina
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