How did you go about purchasing them and from where?
I purchased them directly from Gaitways (
www.theratogs.com) however I understand that the best way to purchase them in order to get reimbursement is to get them through an orthotist.
How did you navigate the insurance company regarding these?
If you go to
www.theratogs.com I believe that there is a section where parents share how they got reimbursement. I know a therapist in New Jersey who was able to get a togs set 90% paid for by Aetna by writing a very good letter of medical necessity so it looks like insurance companies are "getting it".
What issues are you trying to address related to the BPI with these on your child?
I was originally told to get a bilateral brace for both of Maia's shoulders because there was severe weakness on the bpi side and weakness also on the other side as well. My daughter had experience with a brace of that nature a couple of years earlier and it made her lordosis worse (swayback), so I searched out a product that would help her whole body versus just the portion we were working on.
Did you just purchase the vest with straps or the lower garment as well?
We live in Pennsylvania and there was no one local I could find who had a good experience level. I called theratogs and spoke to Beverly Cusick directly and she gave me an option to come to New York where she was giving a course and have Maia evaluated and togged there.
She assessed Maia - her full body - was surprised to see how much of her whole body was affected and gave her a full tog top and bottom with 6 straps to work with. Maia was reassessed 6 months later and was given just one strap to work with, then for Maia's 3rd big assessment we have 6 straps again (different ones). The key piece of togging is to get a correct assessment - it's not about just buying togs and putting them on.
How does the PT use these on your child?
When Maia is togged (daily) she moves differently. She compensates less. So the movement she has is very pure... it is LESS range, but it is a more pure range. Do you know what I mean? In the last three symposiums, courses I've been to Beverly has explained (via Sauermann's Muscle Theory) (and I hope I get this right) that when you have the child move in a distorted way - just to get the range - then you are having them exercise the distortion. So for example, if a child can raise the arm to 60 degrees without back bending, then that's the level they should be working on and moving up very slowly as the muscles strengthen. If the child is forced to raise the arm to 180 with back bending starting at 60, then you are exercising the muscles that are being distorted - the ones that get it from 60 to 180...and you are creating a habit that is very hard to get rid of. It made me realize that we did this for all the years Maia was in therapy.
What have you seen as far as a difference with your child since using them?
I saw a difference immediately. Over the first two weeks, the teacher noticed a difference and asked me what was going on with Maia - she seemed more comfortable in her body, wasn't as clumsy. The way Maia explained it to me is that for the first time she was able to feel where her left side was - she never knew where her body ended. She was able to get down on the rug at school without kicking any of the other kids (not on purpose - just had problems getting down on the floor). She was more confident and her grades got higher because of that ...all around she was just a happier child.
By the way, we could not use any of the arm strapping because Maia broke her arm 2 years ago, lost 3/4 of her humeral head, has a dislocated radial head and still has pain. I'm working now at desensitizing her arm with brushing and massaging ,etc so that it can take one strap as a start. I'm hoping that she will be able to sleep with the night strap system so that her arm is in a better position for all those hours. One day at a time.
The MOST IMPORTANT piece that came out of the assessment is that Maia's one leg is actually shorter than the other one. This is why she looks bent over when she runs and why she limps. She never weight beared enough on the one side, therefore now the leg is 1 cm shorter. Beverly made a heel lift for Maia on the one side and it gave her instant relief. We are working with an orthotist to make a more permanent solution. Maia has a lot of sensory issues - especially with her feet - so this is a longer process than normal. She's the kind of kid who hates lines near her toes, I have to buy diabetic non-line socks for her, so having an orthotic in her shoe right now is a bit of a challenge... but we're getting there. In time, as she weight bears more and more on that leg, it will grow, her orthotic will be adjusted continuously until her legs are even length.
I'd love to see a picture of your child wearing the Theratog if you wouldn't mind emailing me one. It would help me to picture the strapping. Don't feel obligated though by any means. My email is: Nursemidwife86@cs.com.
I am working on a new website for Maia right now and will include some current pictures. I'll post when it's done. Each child will have straps going differently based on what their personal assessment is.
Remember that the assessment is the MOST important piece. So if you do not have a "high level" therapist in your area, call theratogs and they will tell you who has taken what course.... I think I will always opt to have Billi assess Maia - she travels enough that she can always be found on the East Coast. But there are some great therapists in the Chicago and Ohio areas, too... Audrey Yasukara, Trish Martin, etc. They will give you a list.
And one more thing.... the best way to keep the tog set intact over a longer period of wear is to rinse them every night and towel dry and then hang them up. They spring back when you wet them. I do this every night and then at the end of the week I put a tiny bit of shampoo in the water to wash them.
Out of all the braces and splints that Maia has had over her 8 1/2 years of life, this by far has given her the most change. It absolutely requires commitment by parent and child- it's not an easy commitment. But we just view this as part of the package. We do togs, TES nighttime e-stim, and pointed exercise on a daily basis... and this is after daily "normal" kind of activities (dancing, aikido , swimming, etc.). Maia's not in formal therapy right now where she goes somewhere, but we do work with two therapists who are providing her with her exercise plan and we do this independently at home. At age 8 1/2 we're finally at the stage where we can do this - it definitely requires a little maturity.
Thanks in advance for answering my questions.
You're welcome. Feel free to email me at
franlitz@gmail.com or call me at (215) 643-5913 if you have any further questions. If you are in the PA area, you are welcome to visit and get a tour of Maia's tog.
Tanya in NY
Amber's Mom, ROBPI, 4 years old
