Our PT is using Theratogs on my daughter. Anyone have experience with its use and success rate?
Thanks
theratogs
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Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: theratogs
I'd actually like your input on these. We're looking into getting these for our daughter. Our OT has no experience with these, but I've been looking into these online and trying to find resources. I've seen a video and spoken via email with Beverly Cusick about them.
How did you go about purchasing them and from where?
How did you navigate the insurance company regarding these?
What issues are you trying to address related to the BPI with these on your child?
Did you just purchase the vest with straps or the lower garment as well?
How does the PT use these on your child?
What have you seen as far as a difference with your child since using them?
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.
Thanks in advance for answering my questions.
Tanya in NY
Amber's Mom, ROBPI, 4 years old
How did you go about purchasing them and from where?
How did you navigate the insurance company regarding these?
What issues are you trying to address related to the BPI with these on your child?
Did you just purchase the vest with straps or the lower garment as well?
How does the PT use these on your child?
What have you seen as far as a difference with your child since using them?
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.
Thanks in advance for answering my questions.
Tanya in NY
Amber's Mom, ROBPI, 4 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: theratogs
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
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
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: theratogs
FranLitz,
Reading you great information on the use of Theratogs, I understood for the first time!!["light bulb moment!] why & how MY Body feels the way it does on my LOBPI side. WOW!! no wonder we adults have the PAIN Issues AND OTHER STUFF TOO,secondary injuries/conditions, that we each have according to the serverity & locations of the damage done our whole lives without the correct or adequate interventions. Knowledge about our bodies and how it does and doesn't work is soooo empowering.! Of course your daughter does better in school!! I, for one, want to continue to follow Maia's progress and ALL accomplishments. I hope you get her website up & running soon.
Yahoo!! for Maia!!
HUGS all around,
Carolyn J
LOBPI,68 & Proud of it!
Reading you great information on the use of Theratogs, I understood for the first time!!["light bulb moment!] why & how MY Body feels the way it does on my LOBPI side. WOW!! no wonder we adults have the PAIN Issues AND OTHER STUFF TOO,secondary injuries/conditions, that we each have according to the serverity & locations of the damage done our whole lives without the correct or adequate interventions. Knowledge about our bodies and how it does and doesn't work is soooo empowering.! Of course your daughter does better in school!! I, for one, want to continue to follow Maia's progress and ALL accomplishments. I hope you get her website up & running soon.
Yahoo!! for Maia!!
HUGS all around,
Carolyn J
LOBPI,68 & Proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: theratogs
Here's some pictures....
the top set is when she had her first session
the last picture -sorry it's so poor - I took it fast before she left for dancing and the room was too dark.... she's only wearing one strap today but look at the difference in her posture from a year ago to now - it's the leg difference.
http://www.injurednewborn.com/maiatogs.html
People have heard me say that it's the paradigm shift for Maia. I truly believe it has been.
the top set is when she had her first session
the last picture -sorry it's so poor - I took it fast before she left for dancing and the room was too dark.... she's only wearing one strap today but look at the difference in her posture from a year ago to now - it's the leg difference.
http://www.injurednewborn.com/maiatogs.html
People have heard me say that it's the paradigm shift for Maia. I truly believe it has been.
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: theratogs
Bumping up for Dawn and Cassidy.
HUGS all around,
Carolyn J
LOBPI/69 & counting....
HUGS all around,
Carolyn J
LOBPI/69 & counting....
Carolyn J
Adult LOBPI
Adult LOBPI
-
aidansmom311
- Posts: 31
- Joined: Wed Dec 05, 2007 1:35 pm
Re: theratogs
Hey All!
Aidan just got his theratogs in December (Tanya I can email you his pics too if you'd like) I also have great kinesiotaping pics after his was done the first time that I still use for reference. Getting them covered was difficult but WORTH it! They have become more expensive again this year. We had to pay for them and we're getting reimbursed by insurance because company wouldn't take direct insurance pay. They do now offer a BPI kit. This was very helpful because the manual and DVD all specialized in BPI strapping. I could not find an experienced therapist but I used my very good PT and the 2 of us have worked very hard to correctly get this working for him. It is AMAZING and INSTANT RESULTS! As soon as we put the lordosis straps on him Aidan IMMEDIATELY stopped extending his hips to reach over his head. I assume we all see this - they reach up and the back arches to get the arm all the way?? This immediately would not allow him to do this so he showed us his true range (as Fran said) and he was working to strengthen the muscles with correct movement pattern. Your nervous system lays down movement patterns in the brain as we learn to move, once that happens we need to relay those patterns correctly. This system does that!! Amazing! OK - done babbling! But they are amazing! It's like fulltime therapy! We were even able to decrease his PT once a week because these are doing so much more for him.
Aidan just got his theratogs in December (Tanya I can email you his pics too if you'd like) I also have great kinesiotaping pics after his was done the first time that I still use for reference. Getting them covered was difficult but WORTH it! They have become more expensive again this year. We had to pay for them and we're getting reimbursed by insurance because company wouldn't take direct insurance pay. They do now offer a BPI kit. This was very helpful because the manual and DVD all specialized in BPI strapping. I could not find an experienced therapist but I used my very good PT and the 2 of us have worked very hard to correctly get this working for him. It is AMAZING and INSTANT RESULTS! As soon as we put the lordosis straps on him Aidan IMMEDIATELY stopped extending his hips to reach over his head. I assume we all see this - they reach up and the back arches to get the arm all the way?? This immediately would not allow him to do this so he showed us his true range (as Fran said) and he was working to strengthen the muscles with correct movement pattern. Your nervous system lays down movement patterns in the brain as we learn to move, once that happens we need to relay those patterns correctly. This system does that!! Amazing! OK - done babbling! But they are amazing! It's like fulltime therapy! We were even able to decrease his PT once a week because these are doing so much more for him.
-
Drake's Mom
- Posts: 70
- Joined: Mon Jun 11, 2007 3:59 pm
Re: theratogs
i want to see pictures of both Togs and taping. I just got the Kinesio tape and i cannot remember where EXACTLY to place for scapula winging. His therapist is gone for 3 months and his new therapist isn't sure.
jtkdferguson@aol.com
thank you
Teresa
I am looking into the Togs right now so thanks for the help
jtkdferguson@aol.com
thank you
Teresa
I am looking into the Togs right now so thanks for the help
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aidansmom311
- Posts: 31
- Joined: Wed Dec 05, 2007 1:35 pm
Re: theratogs
So sorry! I've been very busy at work this week so haven't been on boards much. I have great pics of the kinesio taping. I will email them to as soon as I can.
Michelle
Michelle