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

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Very nice to read that you're getting real PT support from your school. Our school system refuses to provide any hands-on PT. They consult only.
Hi,
Most of our PT (authorized through our private insurance) experience has just been putting together a home program of exercises and teaching our son and us how to do them properly. Once the home program has been set up, we are pretty much on our own. My son is 17 years old and stubbornly refuses to do any of his stretching exercies or wear his AFOs at night. We have an authorization for serial casting of his feet and are waiting to set up the appointment, that is if he is willing to cooperate. It gets really hard when they get older. Our son is a Jr in High School and is enrolled in an Independent Study program through our school district. When he was still going to his regular high school his adaptive PE teacher helped us out by having him do stretching while he was in PE with her. He was much more cooperative with her than us.

My son is still walking, but it is getting harder as his heel cords tighten. At his last appointment they measured his range of motion and he had about a 20 degree foot drop. We are hoping he will agree to the serial casting so he can get some of his range of motion back and continue walking for a bit longer. He is using his wheelchair more and more.
Susan,
Thanks for your response. It sounds like you have had some good input and assistance from the PTs in your school system. I feel like I am somewhat floundering in trying to come up with an effective home program that works for our family. The PTs in Cincinnati are great, and they have given me a list of stretching exercises to do, ideally, daily. We do these, which takes about 15 - 25 minutes. Avery is also supposed to wear hand splints for about an hour a day, and he wears night splints while he sleeps. My private PT does not seem to be convinced of the effectiveness of the stretching exercises, so I am constantly doubting myself as to whether I am doing all I need to be doing. She does very minimal stretching with him during a session, so 98% of the stretching he gets, he gets at home. Does this program sound similar to yours? Yours is obviously effective if your 17 year old is still doing as well as he is doing. Best of luck with the possibility of serial casting for your son. I can imagine that it would get harder to get our sons to stick to the home program once they get old enough to have their own opinion-be strong and know that you are doing your very best for your son, even if he's uncooperative at times.
We have a 'wedge' that my father built for Jon to stand on and stretch his heel cords. It is about a 15 degree incline. He uses it against the wall and his weight helps the stretching. I'll take a picture of it and upload it later. I have no clue how to get pictures off the camera and onto the computer.

Susan
What a good idea! We have what we call a "L-sit chair" that my dad made for Avery. It works really well in stretching his hamstrings. Avery is very resistant and has a hard time relaxing during manual stretching, so the wedge would be a good addition to our regimen. Thanks! Vicki
Vicki,
We also have knee splints that we put on Danny for 1/2 hour a day with his dafo's on and then have him sit in the L seat. It gets a great 1/2 long stretch and he watches a tv show and is totally distracted. we also stretch him several times a day and I can tell pretty quickly when I have skipped 2 days. We have a very supportive PT who works directly with CInc Pt through email and phone. Maybe yours would be willing to do the same or I hate to say it maybe you need to find a new PT. It is so crucial to have one that does the stretching once a week and can tell you what they are noticing so you can adapt your home PT program.
Hi,

I've been trying to upload a photo of Jon's wedge, but am having no luck. I am new at this.

The wedge is 5" high and the edge that sits on the floor is 13 inches it is 14 inches wide and he can stand with both feet on it at once. I'll try to figure out the photo upload thing later, maybe I'm just impatient I canceled after 20 minutes of waiting for it to upload.
At this time of year, I think the best solution would be if you could get Avery's PT to apply through her workplace or another local group, to go to the PPMD conference and talk to the PT presenters with a wealth of experience. That would be an investment in her future clients with DMD as well as Avery since the approach is very different to other conditions.
Hi Vicky,

One document that you might provide to your son's PT was written by Laura Case, PT, DPT, MS. PCS from Duke University: https://www.duchenneconnect.org/images/stories/education_mtls/pt_ha... Her PT Manual is pretty inclusive and possibly the PT might be more responsive getting information in this format. More information is available on the DuchenneConnect website under the Families/Care Considerations tabs: https://www.duchenneconnect.org

Our sons are 16 and soon to be 14. They have received direct PT services from school since diagnosis. Their therapist is excellent and works to improve range of motion (When they were walking and after loss of that ability.) to maintain or improve physical ability, prevent and/or control contractures and assesses the school and home environment to improve independence and functionality. She has shown us stretches to augment what they receive at school and she is a wealth of information about equipment and services she thinks might be helpful.

I hope you are able to rehabilitate your son's therapist and get her to understand the nature of Duchenne. Ignorance is not bliss in this case.

Best of luck.

Brian Denger
Maine
Susan,
I think I know what you are talking about with the wedge. I've been wanting to have my husband make one for our son. My dad made one of these for my mother who has contractures in her heel cords. She hasn't been tested other than having a CPK above 1000 but there is a good chance she is a manifesting carrier with the muscle weakness she has been experiencing. She was receiving Physical therapy herself but the insurance only covers a certain number of sessions each year. She says Bradley could really benefit by getting PT at this same place. They offer water physical therapy there as well.

Brian,
Thanks for sharing the link to the document on PT Management for DMD/BMD. There is a lot of useful information contained there. I might just print this out for our school PT when school resumes.
I cannot stress enough the importance of aquatic therapy on DMD boys to maintain their flexibility and prolong strength. My son Marco is like a new person when he gets done with aquatic therapy. It is one of those days I look forward too. We are trying to get 2 days a week since it does him alot of good.
Pt is very important. The right therapist even more. My son was involved in ENH place for PT 3 years , since diagnosis. I was the one who observed that he may have scoliosis.( about month ago) I was right!!!!!!!!!!!!!!!!He does ,12 degrees already and his one leg is longer 1 cm.(1/4 inch) .The pelivic is also tilt about that 1 cm.( because the leg is longer that 1 cm.) I change the places and looks like I find better place now. I think that our new PT would also "think" not only "do her job". I was told by menager of the ENH Pt that therapiest are not to dignose patients. Yes, manager is right , the doctors are to diagnose patients -, but neither Mothers are not to diagnose own kids !!!!!!!!!!!! I am very busy now with fixing house for my son , but I would be back to that manager soon to still "cheat little." New therapy place also acomodate my son for 2 months in Summer for aqua therapy. I have good feelings about our new therapist and I hope that she is right that she still can help my son. ( OUR PREVIOUS THERAPIST WAS RUNNING OUT FROM GOALS FOR MY SON.!!!-can you believe it ?---she tryied in December to make us stop therapy! ---- (HOW ABOUT MONITORING HIS BACK LOSER? you saw him every week MSS. Profesion, -DMD is not only about legs and tendons!!!!!!)

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