How much physical therapy is to much for a child with DMD
My child goes to therapy at a learning center on Tuesday's for pt well on the same day he has pt at school. The school is trying to tell me that that's too much therapy for a child. Well I didn't mean for therapy to be at the learning center the same day as the school, after we started the pt at the learning center all of a sudden school is like well we have pt at school that same day. PT is at 10-11 and then at school at 12-12:30. I don't think 1 hr and a half is gonna hurt anything. I really would like to know if anybody know's how much therapy really is to much because I just don't know what to do I'm having a battle with the school and just don't know what to do. The doctor refered me to the learning center for extra help. The school tries to say that I shouldn't be taking him out of school period.
Replies to This Discussion
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Permalink Reply by Jennifer Shumsky on
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I think it depends on what kind of therapies they are both doing really
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Permalink Reply by Amanda Trosper on
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The school does PT OT and Speech. But the Learning Center does ABA and the school doesn't provide ABA therapy. At the learning center in OT they do leg stretches and the school doesn't do that so I think it helps him out. I just want to help my child out and I fill like I'm left out of the decision making I don't know what to do.
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Permalink Reply by Ivy Scherbarth on
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Hey, this is just the kind of situation that really makes me mad. You are the parent. You know your child. You get to make the decisions as to what is best for your own unique family. If your son isn't getting too tired and seems to have some benefit, then I say go for it. The school can, how do I say this in a family forum?, er, suck eggs. As we all feel, everyday, life is too short to mess around with outsiders trying to limit us or box us in. Power to you, Mama!
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Permalink Reply by Lee Ann Faeth on
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Hi Amanda,
My son Avery is 4 1/2 and in preschool. He was diagnosed just before his 3rd birthday. At the time I had him in private P/T 4x a week for 1 hour sessions. He also periodically visited our local CCS Chapter (California Children's Services) and had P/T with them 1-2 times/month. I don't know the physical limitations of your son, but Avery is still very active and involved in playtime with his friends on the playground at school. He still has periodic p/t with CCS as needed and it will increase again privately and with CCS as time goes on. For the time being, I have been told by several P/Ts that his daily activity, along with stretching that I do daily at home with him is enough. My biggest concern with p/t at this point is making sure that we see someone who truly understands Duchenne/Beckers and provides the proper therapy. If your son is being seen by someone who doesn't understand how to treat a boy with DMD, they could be doing more harm than good.
I tend to agree that 1 1/2 hours of therapy is too much in such a short time period if your son is still physically active. I think the stretching is the most important thing at this stage. Depending on the course of therapy he is receiving, it could be taxing on his muscles.
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Permalink Reply by Jerry Dallapè on
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Ha! Try telling them that you intend to take him out of school permanently. They have no right to tell you that you "shouldn't" do what you feel is best for your son. We took Ewan out of school about six weeks ago (for other issues entirely) and have been homeschooling ever since. He is now doing the work that his class will be starting in Jan/Feb. When we took him out, we asked the principal if it might be possible to skip him a grade next year if we decide to put him back in school (part of the problem was his steroid induced frustration over his classmates not being as smart as he thought they should be). We got a flat out "no", so we may just keep him out and keep homeschooling. Maybe give him his GED when he turns 16 and send him straight to college classes.
Public schools drive me nuts anyway, but the way they turn a blind eye to boys with DMD sometimes just makes me want to puke. Amanda, I know not everyone is set up to be able to homeschool the way my wife and I are. If you feel you can, I would totally support you, but I know it's not realistic for most parents. My point in this little side rant is to just encourage you to fight to get what you think is best for your son. Don't ever feel intimidated by beurocrats into doing what THEY want just because it makes it more convenient for them.
As for the question of 90 minutes being too much, I will agree with another poster here in that it depends on what kind of PT. Also, I would say it depends on your son. Only you know what he needs and what he gets out of PT. I will say that we don't do PT outside of the home at this point. Ewan is 8 and his heel cords stretch to 90 degrees. We either do manual stretches (30 seconds on each side five time each) or boots for one hour. We try to do one or the other every night, but realistically it ends up being about five times a week. So far, he has maintained his 90 degree angle. We don't plan on changing anything so long as he maintains this level of flexibility. Would that be the right decision for every boy? Probably not, but it has worked for us so far.
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Permalink Reply by Cheryl Markey on
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If I understand you as saying is that your son is getting 2 sessions of Physical education or 2 sessions of Physical Therapy with a therapist at these 2 schools......it is good to keep the boys as busy and active as possible, but yes you can over do it sometimes....the saying is true use it or lose it......it would be best for your son to have these 2 sessions of either physical education twice during the week on different days.....like let's say Tues. and Thrus. or even Fri. to break it up.....the same goes if he is getting 2 sessions of physical therapy with a therapist to break it up on 2 different days.....if you are saying he is getting physical education and then a session of physical therapy then again it should be broken up during the week in 2 days and not all done on one day!!!! You want to use the muscles to keep them stronger longer, but you don't want to exhaust them either. I think you are telling us that he gets physical therapy at the learning center then goes to school and has his physical edcuation class on the same day! It would be best to separate these 2 during the week, to benefit him, Tues. would be just fine where it is, because you are coming back from the weekend.....and Thurs.Fri. would be good because you are heading into the weekend.....it is spaced out to benefit him and not overuse his muscles all on one day. ( it would be like having 2 therapy sessions in one week, one being the real therapy session with a physical therapist and then using the physical education as therapy too ).
Hope this helps!
Cheryl Markey
my son Adam has Duchenne and is 23 yrs. old and doing quite well!!!
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Put all anger aside from feeling like the school is trying to run your life....but, did you really stop and think that maybe they could be just right and told you this to benefit your son and not treat you like you don't know anything. Spreading out to one thing on one day and doing the next on the other day would benefit in the long run instead of getting all of his PT on one day.
If they don't listen at school then you get your MD Clinic Dr.'s involved to write scripts and letters and even make calls to the schools.....do you have PET (Parent, Educators and Therapists ) annual meetings in your school system to make sure things are being done for your child to benefit him. The Duchenne Journey as I like to call it.....will be full of mixed feelings from school to just going to a resturant and you can't get your child into the bathroom ( big dignity issue ), the wheelchair arms don't fit under tables to where your son can fed himself, parking spaces ( I am learning that it is mostly other disabled people who don't know where they are to park in handicap spaces ( they park where the lines are where the rampslifts go into ) compared to the non-disabled.....I have called police before to have cars removed, have gone and knocked on car windows and ask the person in the drivers sit to move, have tags to place on the windshields saying you are parked in a handicap parking space and am not afraid to put my name and phone number on it....get these thru our Alpha One Independent Living Office. It will be like this thru the whole journey.....so, don't use all your energy up now as you will need if further down the road.
Cheryl
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I was just talking about physical therapy. They only do PE everyother month or something like that not real sure. The only reason why they do therapy on the same day is because the learning center has no other openings for the PT. I'm not to worried about it anymore I am going to just leave it up to the doctor's and decide what's best for him. The time's have changed. And we did stop physical therapy at home front and his legs are getting tighter since I quit all the extra therapy. We start back up with therapy at home front because the doctor ordered this. Thanks for your input I totally understand where you are coming from.
Cheryl Markey said:If I understand you as saying is that your son is getting 2 sessions of Physical education or 2 sessions of Physical Therapy with a therapist at these 2 schools......it is good to keep the boys as busy and active as possible, but yes you can over do it sometimes....the saying is true use it or lose it......it would be best for your son to have these 2 sessions of either physical education twice during the week on different days.....like let's say Tues. and Thrus. or even Fri. to break it up.....the same goes if he is getting 2 sessions of physical therapy with a therapist to break it up on 2 different days.....if you are saying he is getting physical education and then a session of physical therapy then again it should be broken up during the week in 2 days and not all done on one day!!!! You want to use the muscles to keep them stronger longer, but you don't want to exhaust them either. I think you are telling us that he gets physical therapy at the learning center then goes to school and has his physical edcuation class on the same day! It would be best to separate these 2 during the week, to benefit him, Tues. would be just fine where it is, because you are coming back from the weekend.....and Thurs.Fri. would be good because you are heading into the weekend.....it is spaced out to benefit him and not overuse his muscles all on one day. ( it would be like having 2 therapy sessions in one week, one being the real therapy session with a physical therapist and then using the physical education as therapy too ).
Hope this helps!
Cheryl Markey
my son Adam has Duchenne and is 23 yrs. old and doing quite well!!!
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I'm also glad to hear your son is doing pretty good thanks alot it helps when someone with an older son with DMD gives some advice. We also quit doing speech at homefront and he only does ot twice a week at homefront now to.
Amanda Trosper said:I was just talking about physical therapy. They only do PE everyother month or something like that not real sure. The only reason why they do therapy on the same day is because the learning center has no other openings for the PT. I'm not to worried about it anymore I am going to just leave it up to the doctor's and decide what's best for him. The time's have changed. And we did stop physical therapy at home front and his legs are getting tighter since I quit all the extra therapy. We start back up with therapy at home front because the doctor ordered this. Thanks for your input I totally understand where you are coming from.
Cheryl Markey said:If I understand you as saying is that your son is getting 2 sessions of Physical education or 2 sessions of Physical Therapy with a therapist at these 2 schools......it is good to keep the boys as busy and active as possible, but yes you can over do it sometimes....the saying is true use it or lose it......it would be best for your son to have these 2 sessions of either physical education twice during the week on different days.....like let's say Tues. and Thrus. or even Fri. to break it up.....the same goes if he is getting 2 sessions of physical therapy with a therapist to break it up on 2 different days.....if you are saying he is getting physical education and then a session of physical therapy then again it should be broken up during the week in 2 days and not all done on one day!!!! You want to use the muscles to keep them stronger longer, but you don't want to exhaust them either. I think you are telling us that he gets physical therapy at the learning center then goes to school and has his physical edcuation class on the same day! It would be best to separate these 2 during the week, to benefit him, Tues. would be just fine where it is, because you are coming back from the weekend.....and Thurs.Fri. would be good because you are heading into the weekend.....it is spaced out to benefit him and not overuse his muscles all on one day. ( it would be like having 2 therapy sessions in one week, one being the real therapy session with a physical therapist and then using the physical education as therapy too ).
Hope this helps!
Cheryl Markey
my son Adam has Duchenne and is 23 yrs. old and doing quite well!!!
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Besides the PT your sons get in schools etc. whether it be once a week or twice a week, it is still important to keep stretching their arms and legs at home between PT sessions, maybe not to the extent that the therapists does, but by us stretching them too during the week, it will help their legs and arms from getting tight faster than they need to be.
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Oh yes the doctor's said to stretch him out at home everyday as much as possible and we do.
Cheryl Markey said:Besides the PT your sons get in schools etc. whether it be once a week or twice a week, it is still important to keep stretching their arms and legs at home between PT sessions, maybe not to the extent that the therapists does, but by us stretching them too during the week, it will help their legs and arms from getting tight faster than they need to be.
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You are an awesome Duchenne mom!!!!
Cheryl
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