Hi Cindy!!
My name is Trisha - I am Mom to a beautiful young lady age 12.5- who
is a Right Hemi. My Amber was born almost 9 weeks early, horrifically ill -
Hydaline Membrane Disease, Bradycardia, Apnea, Jaundice and a Stroke- brain
bleed. I knew something was wrong with my picture perfect baby at 9 months
when she tried to crawl and fell on her nose when it was her right arms time
to move. Within weeks I had her in an early intervention - it was OT, PT and
Speech one evening a week, at 22 months she moved into their class room
phase of 5 days a week, 3 hours a day. At 3.5 she began the e-tim assisted
PT twice a week and for awhile she had OT and Speech until the end of first
grade. After that it was just the e-stim assissted pt twice a week. I have
included e-mailed and blurbs written for others to explain about the e-stim
and TES - its long but hopefully informative and undoubtly a bit repeative!!
Brightest Blessings
Trisha
**********************************************************
Here is what I wrote for TASC http://www.tascnetwork.net/
My daughter is a Right Hemi. I will relate my experiences with Amber and TES
and e-stim assisted PT and the wonders I think it has done.
My Amber is now 12 - she began the e-stim assisted PT at age 3.5. E-stim
assisted PT is when the child is wired up - while receiving pt. How it
works - the neuromuscular stim works very simply - it generates the
electrical impulse the brain can't and feeds it into the muscle. It feels
like the last ot first tingles you get when you limb falls asleep or wakes
up. Not the severe pins and needles just the tingle. The benefit to using
this with pt is it retrains or does muscle patterning.
When Amber began her right arm was bent at the elbow and her hand almost
completely paralzed and fisted under her chin and both arm and hand where
atrophied, she wore an AFO
on her right leg. Today, her arm is almost straight - we have I think 4
degrees to go, and her hand is functional to the point where she can pick up
beans - yes she has to pay attention and focus - its not completely
natural - the atrophing was stopped and actually was reversed and her arm
and
leg are still smaller but not as noticeably. The constant exposure to the
electrical
stim - prompted both muscle and bone growth. One of the wonderful side
effects is - we have manged to skip the tendon cutting surgeries.
We added TES for awhile - Amber said it made her arm feel stronger and she
would occasionally spontaenously use it. I think the two used in conjunction
can make a big difference. However - it is not an overnight
process and it takes years.
Is it worth it - yes in my book.
I feel that these therapies gave Amber a much better shot at a "normal"
life. Amber can run the mile in 9 minutes - a wonderful accomplishment
considering where we started out.The improvement in her hand is just short
of a miracle.
Brightest Blessings
Trisha
*********************************************************
Regular ole e-mails - I have written for CCParent!
Hi All,
Along the lines TES but used in a practical application is e-stim
assisted pt . My daughter Amber - Right Hemi (age 11.5) gets e-stim assisted
pt twice a week and has for the last 8 years - in that time it has reversed
a great deal of the paralysis she had and the atrophing of the muscles. When
we started Amber was wearing AFO's and her hand was fisted and her arm
curled up under her chin. She now runs, walks, ice skates, roller skates and
bicycles independedently and no clunky braces!!! Her arm hangs at her side
and she has some independent finger movement - her right hand will never be
100% but she can pick up beans and turn her hand most of the way over -
finger motor control is coming - slowly. The atrophing has stopped and
infact been reversed and you can't tell unless you scuntinize closely any
difference. She has had TES at night and she says its makes her arm feel
stronger. I highly recommend both done in conjunction, it has done wonders
for Amber and I think even circumvented the need for some surgeries. And
yes, like all mini miracles its expensive. It was covered by Blue Cross and
Blue Shield.
Brightest Blessings
Trisha
********************************************************
>Karen wrote yesterday :When you say e-stim assisted PT, do the muscles
>actually contract, or is it like TES where you don't feel contractions? I'm
not
>sure what e-stimassisted PT is, perhaps you can shed some light on the
topic.
Sure. Units just like the TES units are used while the child is put
thru their PT routine. It is a muscular re-eduaction type item program, and
it works much better than just pt or just TES. I had myself wired before I
had them try it on Amber. It fells like the end of the tingles when your
limbs go to sleep. As she turned the current up my fingers actually
straigten out by themselves. It actually simulates the current your brain
would put into the muscles if they worked or where there. The child can
learn to use the affected limb thru many repetitions and re- educate the
muscle to function. I think it is super - Amber right hand was paralized in
varing degrees from some fingers completely to the ability to use it as
solid unit to hold things against her body. Today - altho it takes effrort
and concentration on her part she can tap her fingers and pick up small
beans.
>You state that muscles and bone growth are stimulated, but does that apply
>for TES or the conventional e-stim that contracts muscles? Is the reversing
of the
>paralysis and >atrophying caused from TES or the e-stim assisted PT?
I think the two work well in conjunction. Amber has been on the
e-stimfor many years but improvement in limb strength came with the long
term
TES. Both are putting an electrical current into the muscles and the bone
so both benefit from the growth this stimulates. Ambers arm lenghthened - a
bone item and the muscles improved in mass. Since they are both the same
thing - the net the same benefit. The difference is TES is a night -time
long term (hours at night) and e-stim assisted pt is only for the lenght of
the pt session. There is carry over after each so the improvement builds up
with time. TES is getting it's moment in the sun - I suspect to the yuppie
and sports medicine use of the machines for healing athletics. The e-stim
assisted pt has actually been around for a while. Amber has had it for 8
years already and we go to a pt that has been doing it many years longer.
The major problem is because of the cost and people's tendency to push
their expertise - it is not a wide spread phenomen. Amber's therapist is
happy to
talk to and train therapists who are interested and I have had several
intertested parents do this. It is ironic that one of the therapist was
using this with her older patients but never connected the benefits as
something for the kids. I would certainly be happy to give you Amber's
therapist name, address and phone number and the name, address and phone of
an associate in California.
If I haven't covered everything e-mail you ask or this brings up yet
more questions please let know.
Brightest Blessings
Trisha
***********************************************************
Hi Timmesa and Beth,
>I am still trying to make a decision regarding Theropeudic Electrical Stim,
>does anyone have a child on this treatment? Can anyone provide me any
>insight, thoughts, pros, cons?
I will relate my experiences with Amber and TES and e-stim assisted PT.
My Amber is now 11.5 - she bega the e-stim assisted PT at age 3.5. E-stim
assisted PT is when the child is wired up - while receiving pt. How it
works - the neuromuscular stim works very simply - it generates the
electrical impulse the brain can't and feeds it into the muscle. It feels
like the last ot first tingles you get when you limb falls asleep or wakes
up. Not the severe pins and needles just the tingle. The benefit to using
this with pt is it retrains or does muscle patterning. When Amber began her
right arm was bent at the elbow and her almost completely paralzed and
fisted under her chin and both arm and hand where atrophied, she wore an AFO
on her right leg. Today, her arm is almost straight - we have I think 4
degrees to go, and her hand is functional to the point where she can pick up
beans - yes she has to pay attention and focus - its not completely
natural - the atrophing was stopped and actually reversed and her arm and
leg are smaller but not noticeably. The constant exposure to the electrical
stim - prompted both muscle and bone growth. One of the wonderful side
effects is - we have manged to skip the tendon cutting surgeries. I was not
putting my kid thru that everytime she grew - when there was a way around
it.
We added TES for awhile - Amber said it made her arm feel stronger and
she would occasionally spontaenously use it. I think the two used in
conjunction can make a big difference. However - it is not an overnight
process and it takes years. Is it worth it - yes in my book it is. It is a
person thing - I willl move heaven and earth if that what it takes to make
Amber as close to normal as she can be - I am fuzzy here because some people
know about it but their kid is not so bad - so why bother. To me its kind of
being in denial. I guess that they are leaving their child with a
unnecessary handicap - doesn't occur to them. It is not experimetal -
Amber's therapist has been doing this for many years - even years prior to
having Amber as a patient. One thing that must be realized about the medical
profession is - they are no different than we are, and few of us readily
except new stuff and learn it and embrace. I think this is proven buy the
fact my Amber has been having this for 8 years and yet people are just now
hearing about it??? How about the units are expensive and you need some
training and an open mind. You need to learn to rely on your own judgement
and not what the experts say because you can find experts on either side.
Let use my own experience about how I learned about e-stim and the places
responce where I was taking her. My ex-sister in law was babysitting Amber
one afternoon and took her to her sons PT session and I picked Amber up
there. I saw what the theraspist was doing and ask if it could help Amber -
she says yes. I ask the people at the center where Amber was about it and
the director thought it was a wonderful idea for Amber and she had known
about but not said anything because I might pull Amber out of the center and
they would loose the incoming money. Never ever think these people do this
for anything other than the money or that would tell you something would be
better for your child if they can't provide it. Hypocritic oath is the
correct terminoloy. Enough rant !! I would be happy to answer any questions
anyone has.
Brightest Blessings
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