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

Views: 306

Reply to This

Replies to This Discussion

Thanks so much for the input- Brain, Deb, Susan, Jenny, and Lisa and all the others! This is a great addition to the PPMD website-it is so helpful to hear advice from parents who are dealing with the same issues that we are. I will take the advice you gave- I am understanding more and more just how important the daily stretching is. Until I can find a new PT who has the same goals as I do, I will do a better job at home with Avery. Thank you for the dimensions for the wedge, my dad is good at making things, and with the info you gave, I think he should be able to make us a wedge for Avery. As far as the knee splints during hamstring stretching, that is another good suggestion that I will look into. I hope I can find a PT with experience with DMD in our area. I have talked to 2 people in the Charleston area, but no names have turned up yet, and we already see the pediatric therapists in the Columbia area. Much further out than that and we would be driving over 2 hrs, which is not really feasible with gas prices the way they are. So, hopefully, I can find us a good PT to help us monitor Avery's flexibility. With the aquatic therapy, do you do that yourselves or do you have a PT in the water doing the exercises with your son ? My mom and dad have an indoor pool that we use, but its mainly been teaching Avery how to swim, and then letting him play independently with swimmies on his arms. Thanks again for all the helpful comments. Vicki
I recommend that you have her look and the PPMD and MDA websites for information. I have a 12 year old that is still walking with DMD, but is slowing down. We have stretch him at home daily since he was three. She is correct on working on his balance, but should not push him to the point of fatigue which in my opinion destroys more muscle. The other thing I push is not using stairs as much as possible. I have also found that Horseback Riding Therapy helps with balance and confidence. Also we do aquatic physical therapy, and just getting into the pool to swim. If you could try and get him to go swimming at least weekly it helps them to stretch more especially if it is warm water. You might be able to get some input from the local school PT even if you home school, I would check with you current public school system in your area. I have our private PT do some monitoring and making sure we are continuing daily stretching correctly, our school PT does a evaluation for me quarterly so I can monitor his stretch and contracture though her. I think that you should also ask Dr. Wong if you can have a PT consult so you can get info for your own PT near home. One other suggestion, there is a Professor of PT at Ohio State that is an expert with DMD. Her name is Wendy King. I am not sure of any contact, but I am sure that Dr. Wong Clinic might have that info. Especially if you talk with Megan McCall. She is the Patient Coordinator for the Dayton Area in Ohio, but goes to Dr. Wong's clinic to do the scheduling a paper work. One other thing PPMD has a DVD out on stretching DMD patients see if you can get it and give it to your PT to look at. GOOD LUCK
Here's a page I put together with links to articles, booklets and papers relating to Physical Therapy and Duchenne. I compiled it mainly to send to the PT that is seeing our son so she had some reference material to read. The idea is this information will give her a better understanding of how she nees to change her thinking slighly with regards to PT and our sons. eg. stretching is more important than working on walking up the stairs while alternating feet and not holding the handrail...

Physical Therapy Information Links

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service