Physical Therapy-Our weakest link
My son, Avery Holmes, is a five year old who was diagnosed with DMD when he was almost 3 yrs. old. We have been involved in private physical therapy ever since. We see Dr. Wong in Cincinnati for our DMD needs except for orthopaedics and PT/OT. My concern is that our PT has little to no experience in treating boys with DMD, and I cannot find anyone in our area who does! Our PT and I often have differing opinions on what we should be doing as treatments/exercises for Avery. I want to focus on stretching and close monitoring of his flexibility, but she seems to think that is not an effective way to spend the hour we have with her. As a result, we usually spend about 15 minutes stretching (primarily his heel cords and hamstrings), and then we do other activities that focus on balance and core strength. Sometimes I think she pushes him too much, probably because most of her experience is with CP which focuses more on strengthening exercises. I am asking for some input on the types of things some of your boys with DMD do during sessions with PTs who have experience in treating these boys. We do stretches at home 5-6 days a week, and I also have a very active 7 year old who is great at keeping Avery active. I homeschool both of them so I know that private PT, not PT through the school sytem, will continue to be in our regimen of care for Avery. I would appreciate any input!!
Vicki Holmes
Vicki Holmes
Replies to This Discussion
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Permalink Reply by Lisa Jones on
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Hi Vicky. I think it is great Avery is getting Physical therapy regularly.
Bradley has 45 minutes weekly alotted for Physical therapy but some of that time is really a teacher taking him out of class for a few minutes so he can do stretching exercises. They are supposed to be doing the stretches daily but Bradley says the teacher does it 1-2 days weekly and the PTA comes once a week to work with him. I should be pushing it but I don't because Bradley has been complaining he does not like being interupted in the middle of an assignment or test to leave and go do stretching.
I have been giving a lot of thought to asking for an order to get physical therapy through our insurance. They allow a limited amount of time annually for PT but we haven't had him getting physical therapy since right after the diagnosis.
After he was diagnosed the PT at the hospital discontinued his PT saying DMD won't get better and therefore there was no need in having him continue. She basically said he would just need the stretching at home.
But now that we are going to Cincinatti and I know more can be done than just sitting back watching this disease progress, I want to do all I can now before it's too late. I'm going to bring this up next month at our first appointments in Cincinnati and see what they think about it.
I wish I had some advice for you on getting your PT to understand DMD more and realize it is not about muscle strengthening but it is about maintaining muscle strength. I guess I am in the position of needing advice myself.
Sometimes Bradley tells me he feel he is being pushed too hard at school when he has to do stretching exercises or is working with the PTA. We have an IEP meeting on May 13th. I'm anxious to see how that goes. They invited Bradley but I am not sure it is appropriate for him to be there. Tom thinks they may put him on the spot. Also a retired teacher said sometimes, having a child attend hinders how honest staff might be about the child if he is there.
At the same time, Bradley is pretty intelligent about his DMD and is mature enough to attend and have a say in his IEP. For instance, the school wanted us to provide a scooter to keep at the school for him. I asked him before the meeting what he thought about that idea. He told me he didn't want a scooter yet because it might make him become wheel chair dependent faster. He then gave me examples on boys he has seen regress very quickly in their mobility.
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Permalink Reply by Brad Holmes on
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Lisa,
Thank you so much for the reply. It can be so frustrating being the " DMD Care Coordinator" for our sons--I wish I had some one here who had all of the answers! I am so motivated, just like you, to do all I can to give Avery the best chance he can have against this disease, but there is so much I don't know. I know that the people at Cinncinati really stress regular stretching to promote good flexibility. Some kids don't seem to have problems with flexibility as much as with general muscle weakness. Avery seems to be fairly strong through his lower extremeties, but has some noticable weakness in upper exts and core. His muscles are hypertrophied and tight, which makes him very at risk for contractures and limited range of motion. Does Bradley have any flexibility issues? If so, do you do any stretching at home now ? We do Avery's stretching as a part of his homeschool program and he also wears night splints as well as hand splints for an hour or so during the day. I guess the problem is that I am always so impressed with the PTs at Cincinnati (we just went for a check up in mid March) that when we come back home, nobody around here measures up to those standards. It is concerning to me that we see a PT once every week, yet it took a PT in Cinn. that we see once every six months to recommend the hand splints for pretty significant tightness in his hands . I had noticed the tightness close to a year ago and had even mentioned it to both our PT here and to the PT in Cinn., but no intervention other than stretching was needed until now. I am glad that you are taking Bradley to Cinn., they are so on top of things there- its very reassuring to have such a great medical team on your side. I also want to say that I think it is great that Bradley is so aware of his condition, and is given opportunities to make decisions regarding his care and treatment. Avery does not ask many questions at this point, although we talk openly about it when the need arises. Best of luck with your trip to Cinn.-I hope you can get some of your questions answered while you are there!
Vicki
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Bradley still gets around well but I don't think he is very flexible. We do his stretching at night before bed and sometimes we do stretching twice daily. He is very tight too.
He is supposed to be wearing his DAFO 2 braces at night as an alternative to wearing them during the day. He had night splints at one time but the P.T. at school recommended day time braces at the end of 3rd grade. He wore these same braces throughout 4th grade but during the summer we didn't make him wear them and we noticed he was getting around so much better without them.
Kathi Kennett (if I remember her name right) called me after I got Bradley registered over the phone with Cincinnati and after I had mentioned a few concerns. She suggested wearing them at night instead of during the day.
He has been complaining about the fit of the braces so I haven't been making him wear them. I plan to address his braces when we go to Cincinnati. I think it's time for a new pair since he has had these over 2 years and they have been adjusted for fit several times. His calves keep getting bigger and they put pressure on the sides of his calves.
I'm afraid its' going to be difficult to find a good local PT here also. If I find one, it'd be great if they would be willing to talk to and take advice from a P.T. in Cincinnati.
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Permalink Reply by Jenny Garofalo on
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Hi Vicky and Lisa,
My name is Jennifer and I have a 5 almost 6 year old with DMD. Danny recieves school and private PT. We just returned yesterday from Cincinati. I know on you tube is a great video on stretching regemine for DMD boys. We had Danny in daytime braces and the PT and DR Wong have decided that they want them only on about a 1/2 hour a day ( when sitting watching TV to keep feet from dropping along with knee immobilzer to get a long leg stretch for the half hour). they felt that even though he was tolerating them during the day that he was breaking down muscle in the leg quicker than if he did not have them on during day. so know they have him wearing them only at night, not both times. Dannys home PT communicates via email with Dr Wong and the Pt in Cincinati frequently. This way they can cordinate his care. The only Pt restrictions I know of is no trampoline, no bike riding on hills, and only go as far as they can. If they say they are tired they are and let them rest for a few minutes and then continue. Hope this helps.
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Jennifer, thanks for sharing your comments. You just gave me a wonderful idea. Bradley has a IEP meeting coming up on Tuesday. I am going to give them Dr. Wong's email and if I can find the PT's email, I think it would great to pass it along to the school as well.
I definately think Bradley's leg braces being worn during the day for walking limited his mobility. He still falls but he was falling a lot more with them on. Kathy Kinnett called me the very day I called Cincinnati to give them all of his information. She called because I had mentioned a few concerns to Karen Long; one being the leg braces. She was the one who told me they recommend wearing the braces at night as opposed to wearing them for walking. It was the PT at school who recommended day braces because he was toe walking and one foot was turning outward. Getting him out of braces during the day was one of the best things we could do for Bradley, he gets around a lot better.
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I will look in my stuff from the trip and get the pt's email for you. Danny's home PT had also put him daytime braces for toe walking and collapsed left arch. Tatiana spent alot of time in ohio explaining why this is not so great and that toe walking is not always the begining of the end of walking but just a means for the boys to continue walking.(did taht make sense??)
also important to bring to IEP is the stretching clip from you tube. our school therapist found it very informative.
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When we went to St. Louis last summer, after hearing Kathi Kinnett's advice, I asked the PT about switching to just wearing them at night and they said it would be fine to do so. Our PT in St. Louis explained that tip toe walking ihelps them compensate and balance themselves. She told us the reason he is falling so much with the braces on is because that compensation is being taken away from him. She also said there is no need to hound him about not walking on his toes because it is not harmful. She explained he should be using his heels and toes to walk and we just need to remind him occassionally. I don't know if this makes sense. She explained it better.
School Physical therapists do not like toe walking, by the way. Has anyone else observed this with them? Bradley's PT told us we needed to keep him off of his toes and another mom here in Southern Illinois mentioned her school PT made a similar statement about toe walking being a bad thing.
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Jennifer, is this the video you are talking about? I actually have this DVD from Parent Project. I think I will take it to the IEP meeting.
Stretches for Duchennne Muscular Dystrophy:
http://youtube.com/watch?v=0_ecVd3kNtQ
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This is the one. It really helps them understand.
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Lisa,
How was the IEP??
Jenny
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It went well. I am so thankful that my husband goes to these IEP meetings with me. He speaks up and is firm where I may not be firm enough. Bradley was supposed to run a mile in PE this Friday, and they said he definately would not have to do that and they would see that the PE is notified. One of the PE teachers is the husband of the special ed. teacher. She takes Bradley out of class for stretching. They thought he was doing so well he didn't really need daily stretches but Tom spoke up and said he really needs the stretches daily at school. She has only been able to do stretching with him 2 days weekly this year instead of the 5 days. She said she would arrange for someone else to do the stretches on the days she cannot do it. I also gave them the DVD for Stretches which will be great for the new person who will help with that. The principal goes to our church now so I believe that really helps. She was there as well.
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Permalink Reply by Susana Arroyo on
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My Parents do all my stretches at home, we used to go to physical therapy, The PT taught my parents all the exercises and everything else!
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