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THE BIG ESTIM PAGE This information is educational only. It was written in 2001. I've gone through it and updated it but there are places where I talk as if Maia is a baby.... and back then she was! I have updated this numerous times and you'll see the notations fro the updates. Please seek the advice of your specialist for further information, prescription and support. There are many different kinds of electrical stimulation: There is TENS, EMS, FES and TES. I will try to explain each of these as best as I can from the sources I have found and from our own experiences. So get out the reading glasses - pour yourself a nice cup of tea and have a good read..... Here is a quick summary of what I have learned about e-stim: When a child has a bpi and a particular muscle spends a whole lot of time not innervated (not connected to an active nerve), it starts dying (atrophying). When it finally gets connected (which may take some time - months) you need to find a way to bring this atrophied muscle back. This is what TES (nighttime e-stim) is used for. This nightime e-stim may help re-grow atrophied muscle. It does not cause a muscle contraction - it just brings circulation to the muscle to feed it. It also brings a lot of sensation to the arm so that the brain has a constant reminder that the arm exists. Once the TES has regrown some of the atrophied muscle, your bpi specialist might recommend that you use NMES stimulation. TES regrows atrophied muscle and the NMES strengthens it by exercising it. NMES only works on non-atrophied muscle. This is what it means when you see "Fittest Fibers Fire First" - only the best muscle cells work when you do NMES - the atrophied ones won't - so you are building up only some of the muscles while the atrophied ones stay atrophied. If you regrow the atrophied ones first, then you will have more muscle bulk to strengthen. NMES is like an exercise program. It takes about 50,000 reps of an exercise to strengthen a muscle. Our kids can't do that - they don't have the endurance. So that's why NMES is recommended. NMES causes a muscle contraction and it can be a bit scary for a child and that's why it's good to buy the best type of machine and not the cheapie ones. I have a cheapie one for myself and it stings and bites - no child would stand for that. The BMR or Empie units purr like kittens in comparison. You do an NMES stimulation 3-4 times a week for 15 minutes. It's like taking an aerobics class - you don't do it for a long amount of time or you will burn out the muscle. TES, NMES and FES can actually be done on the same machine. TES does not cause a contraction. NMES causes a contraction, and FES causes the muscle to work functionally (contraction strong enough to move the limb - like Christopher Reeves standing and walking). The reason you get a different machine to do the TES at night is because the unit is especially designed for children with safety features. It is preset to do a certain type of stimulation (no contractions), it can only go "so high" and not higher. It will shut off automatically if anything happens to any electrode or if water spills on it (not so on the NMES units). and there is as locking mechanism that will make it very hard for a child to change the amplitude. To say the least, it is highly unsafe to have a child sleep with an NMES unit. So that was the quick summary - read below to get more specifics..... Good luck in your e-stim journey. We have been using it with great success (that I descrbibe below) since Maia was 3 years old. |
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TES If
you are told by your doctor to do NIGHTTIME e-stim on your child - this
is the one! and this is the ONLY one that can be done overnight.
NMES if
you are told by your doctor to do DAYTIME e-stim on your child - this is
the one!
TENS If you are interested in doing e-stim for pain relief purposes - this is the one! But it's not used for children under the age of 12.
FES This is for creating "electrically controlled" functional movement (this is what Christopher Reeves [rest his soul] used when he did his "walking exercises")
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What Is TES? TES is "Threshold Electrical Stimulation". It is a type of electrical stimulation that is used at night while the patient is sleeping. The goal of TES is to increase blood flow and growth hormone to atrophied muscles. It is used in conjunction with physical and/or occupational therapies. It strengthens the muscles which in turn will improve the individual's functional abilities. TES was developed by Dr. Karen Pape at the Magee Clinic in Toronto, Canada in 1989. The BMR 2000-TES machine is the only unit that is FDA approved for nighttime usage on children it has many safety features / including automatic shutdowns if an electrode falls off or if the child pees, and a lock button that will make it hard for a child to change the settings. How It Works By stimulating the targeted muscle at night, there will be increased blood flow, and therefore, more nutrients (growth hormone) delivered to it. This allows for the atrophied muscles to repair themselves and grow. Under the microscope there is an increased amount of regrowth after treatment with TES. This new growth takes about three to six months. After that time increased muscle strength and improved functional abilities can be seen. Who Should Use It The individual must have a definite diagnosis of muscle atrophy but the muscle must be innervated. It is important that the family be motivated because this is a daily program administered at home. Contraindications Contraindications for TES include pregnancy and implanted devices such as pacemakers. Obese individuals require careful consideration as it is difficult for the stimulation current to penetrate fat tissue. Caution should also be taken in an individual with seizure disorders. The seizures should be well controlled before starting this program. TES does not cause or exacerbate seizures, but it is always recommended that seizures be controlled before any new treatment is begun. It is also important to note that while TES will augment current treatments, it cannot prevent or replace surgical intervention. Complications There are no known permanent, undesirable side effects to TES. There are some transient side effects. The incorrect placement of electrodes can actually increase spasticity. Stimulating at an intensity that is too high can result in muscle aches. The above two side effects will subside within a few days of stopping the treatments. Rarely there have been reports of skin irritation from the electrodes. Occasionally when an electrode is old and the sticky layer is moldy (hard to tell) - the child may get a fungal growth (redness). When this happens, TES is stopped until the skin irritation is gone and a new electrode should be used. Normal skin irritation is more likely to occur if the individual has a sun burn or skin lesion (such as chicken pox). It is recommended that treatment be suspended while such lesions heal. Results Three to six months after starting TES, an increase in muscle bulk is apparent. In the following months functional changes can be seen. Some parents report that their children sleep better through the night when they use the TES and others whose children have severe sensory integration issues report that their child can't stand it even for a moment! It would be great if you could borrow a unit from your therapist to see how your child will react to it before making the big purchase. The use of TES is relatively new; therefore, research material is limited. One criticism of the TES program is that the majority of research has been done by Dr. Pape. However, as TES becomes more popular, other centers have begun formal research studies. Source: The Center For
Functional Restoration, The Hyman-Newman Institute for Neurology and
Neurosurgery, Beth Israel Medical Center, Singer Division, New York, NY
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What is NMES? NMES is "neuro-muscular electrical stimulation". NMES is used for the relaxation of muscle spasms, increasing range of motion, reduction and prevention of muscle atrophy, reeducation of muscles and increasing local blood circulation, for relief from minor pain (joint pains, muscle aches, etc) and stress, to strengthen muscles, improve overall appearance, and enhance your physical training. When we hear of kids with bpi getting e-stim during therapy - this is what they are getting. NMES uses electrical current to stimulate your muscles through passive exercise. By placing the pair of pads on a particular muscle group, your muscles respond to the impulses that are generated by contracting and relaxing rhythmically as instructed by you through the unit. When a muscle contracts as a result of a unique EMS/TENS signal, the chemical changes taking place within the muscles are similar to those associated with voluntary contraction in "normal exercising". These chemical reactions which result from muscle contractions utilizes glycogen, fat and other nutrients stored in the muscle. These resulting series of muscle contractions will enable an individual to tone, strengthen, and combat flabbiness while improving contour. WORKING WITH THE BMR NT 2000 NMES UNIT These
are the parameters we were given by one of our bpi specialist docs:
TO USE THE UNIT:
Also - here is a TRICK to find motor points! This works really great especially since our kids motor points might be placed differently due to muscle transfers, muscle size (smaller), etc.
THIS
WORKS EVERY TIME!!
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Electrical Stimulation In Children, L. Michaud, Physical Medicine & Rehab: State of the Art Reviews, Volume 14, No. 2, June, 2000. Therapeutic Electrical Stimulation: The Past, The Present, The Future, K. Pape, Network, A Bi-monthly Publication of the Neuro-Developmental Treatment Association, July/August 1996 Neuromuscular Approach to the Motor Deficits of Cerebral Palsy: A Pilot Study, K. Pape, S. Kirsch, A. Galil, J. Boulton. A. White, M. Chipman, Journal of Pediatric Orthopaedics 13:628-633m 1993 Raven Press, Ltd, New York Initial Experience With Home Therapeutic Electrical Stimulation For Continence In the Myelomeningocele Population, A. Balcom, M. Wiatrak, T. Biefeld, K. Rauen, P. Langenstroer, The Journal Of Urology, 1997 by American Urological Association, Inc. Continence Following Electrical Stimuluation and EMG Biofeedback in a Teenager With Imperforate Anus, S. Kirsch, B. Shandling, S. Watson, R. Gilmour, K. Pape, 1992, Magee Clinic, Toronto, Canada Developmental Apraxia Arising From Neonatal Brachial Plexus Palsy, T. Brown, C. Cupido, H. Scarfone, K. Pape, V. Calea, A. McComas, reprints available by contacting Alan J. McComas, Division of Neurology (Room 4U1), McMaster University Medical Centre, 1200 Main Street West, Hamilton, Ontario, Canada L8N 3Z5. Electrical Stimulation and Biofeedback Techniques and Continence, W. Kaplan, I. Richards, C. Durkee, M. Plummer, A. Balcorn, T. Biefeld, Dialogues in Pediatric Urology, Volume 21, Number 9, September 1998. Therapeutic Electrical Stimulation (TES) For The Treatment of Disuse Muscle Atrophy in Cerebral Palsy, K. Pape, Pediatric Physical Therapy, 1997 Clinical Perspective: Use of Sensory Level Electrical Stimulation in the Physical Therapy Management of a Child with Cerebral Palsy, S. Beck, Pediatric Physical Therapy, 1997 The Diplegic Child: Evaluation & Management: M. Sussman, 1991, American Academy of Orthopaedic Surgeons, 6300 North River Road, Rosemont, IL 60018 BOOKS: Introduction to Surface Electromyography (1998) by Jeffrey R. Cram & Glenn S. Kasman with Jonathan Holz (Aspen Publishers, Inc.). If anyone is interested in ordering the volume it is at 800-638-8437 (http://www.aspenpub.com) Clinical Electrophysiology (1995)by Andrew J. Robinson and Lynn Snyder-Mackler. Publisher is Williams & Wilkins. Electrical Stimulation: Enhancement of Muscle Function, An American Physical Therapy Association Anthology (1993). This volume includes research articles, mostly from the 1980s, investigating efficacy of NMES.
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PRACTICAL INFORMATION ABOUT PURCHASING & USING A TES UNIT
STEP ONE: Contact your specialist and get two prescriptions and one letter: (1) prescription for the unit - the BMR2000-TES (should be specific as this is the only machine FDA approved for TES nightime use with children) ....and 99 months for the usage. Here is a form (pdf file) for durable medical equipment prescription that your doctor can use. (2) prescription for the therapist for initial evaluation and re-evaluations once a quarter for 99 months or more. Get two or more original copies of this prescription (in case you need to change therapists) (3) Letter of Medical Necessity - Your specialist must write why this particular therapy is medically necessary and how no other therapy works the same way with the same results - state how long the child will be using the unit and how much percentage improvement the child might get from it - also what negative issues (results from NOT doing the TES) the child will avoid by doing this therapy. Here is the lingo for for children with brachial plexus injuries: "nighttime neuromuscular stimulation to treat disuse muscle atrophy secondary to brachial plexus injury" The insurance codes are as follows: Diagnosis: Disuse Muscle Atrophy 728.2 Equipment: BMR
2000-TES Unit: E0745
STEP TWO: Contact TASCnetwork (info@tascnetwork.net) to get a listing of certified TES therapists in your area. (www.tascnetwork.net) Call the therapists and find one who has training and experience in brachial plexus electrode placements. Here are some questions you may want to ask: (1)
what date did you take your TES certification course? did
you learn the brachial plexus placements at this course?
STEP THREE: INSURANCE COVERAGE: Call your insurance company to find out if they will cover it and if not - what the appeals process is, etc. If you don't have a case manager - now is a good time to get one. If they send this to an outside expert for an evaluation and it is still denied, you are entitled to get a copy of this expert's report. Sometimes the expert's report is favorable but someone in the insurance company denies it anyway - it is your right to find out why. "What research have you done and what is your denial based on?" Post something on the www.ubpn.org message board to see if other families who have your insurance company got approved or not. This is a good way to network and find out what they had to do to get approval.
STEP FOUR: ORDERING THE UNIT: ORDERING THE SUPPLIES: Electrodes can be ordered through the National Medical Alliance. They are DME's that sell the Axelgaard electrodes. CLICK HERE FOR THE LIST (PDF FILE) OF COMPANIES THAT SELL AXELGAARD ELECTRODES. Other
suppliers are: I suggest that for you initial try-out period, you order 2 sets of different kinds of electrodes, and one extra set of wires - always have extra wires on hand. Although not shown below - we seem to do well with the Pals silver electrodes. But every child is different because every child's skin is different - humidity in the home is different - sweat is different, etc.
white
electrodes are the foam ones (1.5" circle and 1X4" rectangle)
this
is one of Maia's placements - vertical back and triceps
About the goop layer: The goop layer - dries out easily or gets too moist easily. You can moisten them with your finger tip (dipping into water and spreading the water on) or you can spray them with water and put them in a zip lock bag and they will rehydrate. Sometimes I just put a couple of drops of water in the zip lock bag and that keeps them nice and moist or put a tiny piece of damp paper towel in there. If the edges get dry and the middle is thick and goopy - you can actually let it all dry out - and then re-wet them and it will re-gel uniformly. It's actually pretty cool stuff. You stop using the electrode when the goop degrades and doesn't cover the whole electrode or you can try out TAC GELor TENSIVE. You can probably purchase both of those items locally - you need to check with a medical supply house that deals with electrical stimulation systems. Tac Gel or Tensive is a very inexpensive electrode glue. It is used in geriatric cases where the skin is very frail. Put your electrode on a wet paper towel until the goop layer is really hydrated - it will slide off. Wash it with a wet paper towel (on the side you will glue) and dry it off. Put a very, very thin layer of Tac Gel on the electrode and let it dry for 1-2 minutes.... then put it on the skin and press it down for a minute or so. When you remove the electrode, you will need to wash the skin well to remove the glue (wipe works fine) and you will also need to clean off the electrode immediately (don't let the Tac Gel dry on!). Your carbon electrodes will last a very long time using Tac Gel. (sometimes even a year!) You can certainly use the goop layer on the electrode until it's done and then pull it off and use Tac Gel. Tac Gel is also more sanitary because you are cleaning it off and putting a new layer on each time - no mold or fungus...no dead skin embedded into the goop - no sweat in the goop. Makes sense doesn't it? But some kids will get a reaction to Tac Gel so ask whoever you are buying it from to give you a sample tube first. EASY REMOVAL OF THE ELECTRODE: Here is the pain-free method to remove electrodes: Keep a bowl of water nearby. Wet your finger and wet the corner of the electrode (underneath). Wet your finger again and now wet a little more underneath the electrode - you will see how it separates from the skin easily. Keep on wetting your finger and then wetting the electrode and within just a few more seconds the electrode will be off. Simple, pain-free and no hassles! About humidity and skin types: There is no rhyme of reason to how this works. Maia has severe eczema and dry skin. So what we do is towel dry her arm after her bath and apply the electrodes and we tape them with Nexcare tape products (we use Advanced Holding). She uses the carbon electrodes. There is this equation of how humid the room is versus how dry your child's skin is versus many other possibilities that will define what will work for you or not work for you. It's going to take a while to figure this out for your child... so just be patient. We all have to go through this transitionary period. With Maia - when I remove the electrodes, I wash her with a diaper wipe, then I coat the whole area with Eucerin cream to moisturize it during the day and it's fine for the night. We have also used a long sleeve organic cotton t-shirt that works well in holding electrodes on instead of the tape. We get the shirts at http://www.kidsnatureonline.com/store/page14.html. The shirt they have are organic cotton and they shrink down so that you have a tight fitting shirt that is extremely long lasting. It works really well actually. Some other parents have reported good results with vetwrap (but be aware of the compression aspects of this tape) and some parents use ace wraps (same compression problem). Warm / humid climates and electrodes: The goop layer can get moldy. This hard to tell because the goop is clear and it is against a dark brown carbon electrode. If your electrode smells in anyway than take a closer look at the gel layer - it might be moldy. You can pull it off and wash off the electrode and use TAC GEL as a replacement. (yuck mold!) Our first tip that our goop was moldy was a rash that Maia had where her electrodes were...and it smelled. Gross! We also learned from a friend who has a biracial child that a fungal infection may show up as a lightening of the skin. We were told from the experts that they should throw away those electrodes and use a different placement until it cleared up. SO IT'S GOOD TO HAVE AN ALTERNATE PLACEMENT! WIRES: You will need to order an extra set of wires because they fail, too. They will fail faster if you tape such that the wire lead looks like it's popping up. Wires will fail because as the child sleeps the wires will get pulled here and there. They do have a 6 month warranty, but you should have an extra one on hand in case of failure....you don't want to stop treatment for a whole week waiting for a new set of wires to come in. BATTERIES: Regular Batteries: Eveready batteries fit perfectly in the TES unit casing. Duracell's are smaller - but you can tape the bottom so they will fit better. No problem. They say that the batteries will last for 7 days but we haven't gotten one yet to last more than 4 days - but then again Maia sleeps for 11 hours so that might be the difference. Have your friends save you battery coupons - 5 years is a long time, 2 batteries a week!! I wonder if you can go directly to Eveready and get a medical discount or buy in bulk? A friend uses the new titanium batteries and says that they actually do last for 7 days - but locally are also double in cost -- so get those coupons and look for those sales. Rechargeable Batteries: We ordered the rechargeable battery and charger from TASCnetwork and we did not have luck with it because it did not have a tester included and the battery needed to be completely discharged first and we didn't know how to do that. The battery failed after 3 tries with it so we gave up on it. I received an email from a dear friend whose child also does TES and she told me about what she does for the rechargeable batteries.... She bought a recharger from Radio Shack - it drains the batteries automatically before it recharges them. Nickel Metal Hydride batteries do not have to be drained first and they say that they last for 500 rechargings. Nickel Cadmium batteries do have to be drained first. She said to buy two batteries so that you always have one waiting in the wings fully charged. 2003 update: they make high speed chargers now!! so it might be worth a try!
USING THE UNIT: Talk to your child about it first. We call it the "sticky" machine and the tape is "happy tape" and we sing a song about it and well you get the drill.... Becoming part of the TES program requires a great commitment from both parent and child. The child will have to know that it is an every night thing - so you have to really do it every night from day one. Update (Maia at age five): Maia knows that the Sticky machine brings more blood (food) to her arm to make it stronger. So when she eats dinner, I say, "Oh Maia, what's your army going to eat tonight when the sticky machine is on? and Maia will answer, "Yay yay - my armie is going to get macaroni and cheese! Come on Mommy - let's get stickies on !!" Wash and dry the skin to make sure there's no residue of soap or cream or dirt, etc. We always did this after a bath, so Lou would always blow dry Maia's arm, too. By the way - because Maia has very dry skin, when we take the electrodes off, I wash her arm with a washcloth and then apply a thick layer of Eucerin cream and put on a long sleeve shirt to hold the cream in for a while. This is working well. There are two sets of electrodes - your therapist will show you exactly where they should be placed. There is a light blue set and a dark blue set (wire colors). Then the connectors on the lead wires are either dark blue or white. The dark blue always goes closest to the head (proximal). If you are using carbon electrodes, put the wire leads in their holes BEFORE you place the electrodes on the child. If you are using foam electrodes, it doesn't matter. Put them on, tape them down (if you choose to use tape) and you're a go. Have the child wear a long sleeve shirt to bed - covers all the electrodes. And then you can turn the unit on, set the current and push the lock button. What do you do with the machine now? Well I am a stickler for safety in a crib - so in my mind I tried to envision how this unit and long wire was going to work. You can't keep it on the crib mattress because the child will turn, the wires will come loose and it's just too exposed. Some therapists recommend putting the unit in a puppet and leaving that on the crib but you still have wires hanging out and what if the child twists and turns. Doesn't seem safe to me. So I am making fanny packs now.... I use flannel and cotton batting cloth inbetween the layers and have a soft fanny pack with velcro on the belt. The wires stay intact, the fanny pack is comfortable and it's a working solution. If you are interested in one of my Auntie Franny's Flannel Fannies go to www.flannelfannypacks.com . Maia's fanny pack has certainly helped her succeed in this nightly process. I have MANY kinds of fabric - here are just 3 of them...
We also got Maia involved in turning the machine on and setting the current - although I have her push the minus buttons and not the positive buttons. She thinks she is doing it, when she's really not - but she really loves the involvement in her own treatment. I like that, too. We talk about how the "sticky machine" will make her arm stronger and we thank it and kiss all the electrodes goodnight and tell them to do a lot of good work while Maia is asleep. In the morning when we take it off, I congratulate the stickies for staying on all night and doing such good work. The child needs to wear the unit for at least 5 hours per night, maximum 12 hours. Every 4th night they can have a night off, but we keep on going as long as Maia is ok with it. Somehow Maia is much better with just using them 6 nights in a row with a night off for weekend. It's confusing when you do every 4th night. Update: at age 9, I put Maia's electrodes on and Maia takes care of everything else herself...she plugs it in, she sets the unit, and locks it, puts it in her fanny pack and off she goes...... <sigh> ahhh they do grow up!
MISCELLAENOUS BUT IMPORTANT INFORMATION: How do you know what to set the machine to? You need to set it to a comfortable level. Since you are probably not sure about how much sensation your child has, test it out on the unaffected arm. When they make a grimace turn it down until they can't feel it. So for example if they grimace and squelch at a 6, then turn it down to a 4. Then you can see if they can handle a 5 or not. They'll let you know. Try it on yourself - sleep with it to see what it's like. Just remember that your setting will be different from your child's setting - you are not going to feel it the same way - no two people feel it the same way - with or without injury. So that means don't compare two children either. When you put the TES on - the body will become used to it and adapt to it, sometimes within seconds. I'm telling you this so that if you try it out and this happens, here's the explanation. Also - if you do not feel the current at one level - note that when you go to sleep, your body becomes more sensitive to it - so you might feel it then. This could very well be one of the reasons why a child's sleep may be disrupted if they use TES. But most children sleep really good with TES on.... like an automobile ride vibration. How far away do the electrodes have to be? 2-3 finger widths. My personal perspective: Don't do anything to your kid until you experience it yourself. Want to understand TES? Get a unit and sleep with it. Work out all the bugs before your kid gets it. Want to figure out what NMES machine to purchase? Try them out yourself. I say the same thing about alternative practitioners. Don't send your kid to a chiropractor unless you've had at least a month experience with them for yourself. Same with acupuncturists or homeopaths or anyone else. Is it scary for you? Yeah - that's good - feel the fear. Your kids feel it 100 X worse! Once you do it yourself, you'll have a better understanding of what's going on and of the bigger picture. You will also come to understand your child much better and have more patience when behavioral issues pop up. At least that's been my experience. Oh, what our kids go through! If there are any other questions - just ask and I'll try my best to answer. Good luck!
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