My son Landon is 4 and was diagnosed with Duchenne in May of this year. I had him going to speech therapy, physical therapy and occupational therapy three days a week in the summer. Now he has started preschool and I am trying to find a balance in his therapies where it will work with his preschool schedule and his little body. He goes on Monday from 3-5 and Wednesday 3-5 and Friday 2-3. He is so tired and irritable and getting where he does not want to go to therapy at all. He literally throws a crying fit in the car when we pull into the parking lot. I am sure that him starting preschool is a big adjustment for him. He went from staying home with mom to having such long days all at once. He needs to get used to going to school and he needs his therapy!

I am looking for any advice or suggestions on how I can balance his schedule as well as how much therapy our boys actually need. I have a call into my doctors office to find out how many hours a week he actually needs versus what the therapist may be doing based on insurance paying. So if anyone has any suggestions on how to balance this and make life more bearable for my little guy...I am so open to input. Thanks so much!!!

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I think with this disorder it is so hard to say what is truly helping and what isn't. Is my child doing better bacause of something I am doing or giving him or not. I think it is so hard to say absolutly. With regards to your post. You said "the work that is done by his PT has made a difference". It is possible that you could have done no regular PT and your son would still be doing "fantastic" regarding the progression of his dmd.

My son is 15 and also seems to be doing fantastic for his age. We on the other hand have never done any regular PT. He did get some in elementary school each week for 20 min. We stopped when he went to middle school. He did wear night splints on a regular basis until recently but aside from that we do no stretching. I just want parents of young children to realize that you can do all the PT in the world and your son may still need to use a wheelchair at an early age, or do no PT and still be walking at 16.

Jennifer Shumsky said:
Hi JoAnne,
My son had been in PT/OT before the diagnosis also. Once he was diagnosed he continued with PT/OT back to back 30 minutes each weekly in addition to pre-school M-Th for 2.5 hours. We did therapy on Fridays. He would do PT for 30 min, they would overlap PT/OT for 15 minutes and then OT for 30 min. He was 4 at that point. What he did at PT/OT was not streching which we did/do at home daily, it was alot of core body strenghening activites, balance activites and things like that in PT. For OT he had/has many sensory issues that he needed help with. He loved going to therapy. He still see's the same PT and he's going to be 8 tomorrow. He does not get any type of stretching/PT at school. He never qualified and honestly, I prefer he be kept in the classroom as much as possible. My son has a deletion of 48-52, not sure if that makes a difference, but he is doing fantastic as far as his DMD goes. I truly believe that the work that is done by his PT (who has a good amount of experience with DMD boys) has made a difference. I have had other DMD parents tell me they would not know he had it to look at him. I think your gut is telling you the right thing here with your current therapy group. But don't completely give up on weekly therapy based on that group either.
My 4 year old is also doing speech therapy and PT, but not nearly that often. Our neurologist at Johns Hopkins (Dr. Thomas Crawford) doesn't recommend PT at all so early on, saying that the benefits aren't really there. He insisted on us doing deep stretches at home, and we are religious about it. He's also given us night splints. Dr. Crawford is afraid of burnout, which may be what you're experiencing. He typically waits for PT until the age of 7 or 8. We're also working with Dr. Mendell and Wendy King, who have a more traditional view of PT. We are now doing 1 hour/week of speech therapy through the school system and 1 hour/every other week of PT. Our son James goes to Preschool 4 days/week. I've set up his therapy sessions for the day he's off. So far, he looks forward to them both and is doing well. Beyond stretches, the PT is working on his balance and maneuverability and little things like riding a tricycle.
Nicolas saw a physical therapist once a week for a year. She was doing "strength" training. This is absolutely not something that our boys need! I found out from Dr. Wong and her team that this is not necessary and we discontinued PT. All our boys really need is stretching. This can be done by the parents at home. There is absolutely no reason for a PT for our boys. I know some parents believe it is good to have and this may be a bit controversial, especially for the PTs who wrote in, but strength training helps to diminish our son's muscles, and there is just no reason for it. Like Dr. Wong's team said "do you really care how he walks up stairs (one foot after the other), or just that he can walk up the stairs". I know that PTs are great for other issues and other people with conditions, but for our boys, they are just not necessary.... except for stretches.
I think that the newly published Standards of Care has some suggestions about PT at each stage:

http://www.treat-nmd.eu/userfiles/The_diagnosis_and_management_of_D...
Sounds very similar to our son. But he got speech therapy, really didn't change tings much and he still lisps, Physical therapy for 30 min 4 times a week, that was cut to three days, works fine, OT well that's like PT on steroids. Try cutting something out. 2 hours of therapy is a lot, I'm surprised they load that all at once. The most important for him now is the PT; He will be talking OK when he wants to, for the first 2.5 years our son only grunted to talk; He's got an IQ of 130, but at that age I thought he was much, much less.

Keep him stretching and make a game of it, even 5 min intervals for 3 or 4 times a day plus regular walking will do wonders; If you can make it enjoyable without treats, money it's like magic. I tickled a lot and that exercises muscles too made formal stretching that we did only once in a while easier. bounce back at my e-mail, we'ver been at this for 13 years and gone through all the ups, downs and BS you can imagine.
Mike

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