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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His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
I agree and appreciate your input. He is doing 1 hr of speech then 1 hr pt on Monday. Then 1 hr ot and one hr pt on Wed. then 1 hr speech on Fri. I think it is too much and when I voice my concern, they make it out like I don't care about getting him what he needs. And this is all after an 8 to 2 school schedule!! I have tried to call my Dr but have not gotten a call back yet. I want him to get what he needs but not over exert him or have them put him on a schedule based on what insurance "will allow and pay". I want to be sure he is getting what HE needs not the billing. Thanks so much for your input.

Susan Rathfelder said:
His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
Why do you think he needs all this therapy? Is his speech delayed? What is he doing in PT and OT? It does seem like a LOT to me! Also, my understanding after talking to 2 of the best doctors (Dr. Wong and Mendell) in the field, is that PT is not needed at that early age as long as you learn a stretching routine and do it every day at home. You can have a one time a month appointment (if you really want) when the therapist can check his range of motion and make adjustments to his stretching if needed but one time a week at age 4 seems quite a lot if he doesn't have problems. Did his neuro recommend all these weekly therapies?

JoAnne Hathcoat said:
I agree and appreciate your input. He is doing 1 hr of speech then 1 hr pt on Monday. Then 1 hr ot and one hr pt on Wed. then 1 hr speech on Fri. I think it is too much and when I voice my concern, they make it out like I don't care about getting him what he needs. And this is all after an 8 to 2 school schedule!! I have tried to call my Dr but have not gotten a call back yet. I want him to get what he needs but not over exert him or have them put him on a schedule based on what insurance "will allow and pay". I want to be sure he is getting what HE needs not the billing. Thanks so much for your input.

Susan Rathfelder said:
His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
I am so glad to be hearing all of this from other parents. His family physician actually started him in speech therapy before he was even diagnosed with MD. The PT is actually who I finally got to listen to me about something not being right with him and she is who found the MD. The center who is doing his speech got him set up on pt and ot after his diagnosis and while he was not in school it was not an issue. They told me "he qualifies and really needs 2 hours of each a week" but that is what I meant by "what he needs versus what insurance will pay". I feel it is too much too but they make it out like I am not getting him what he needs. I have called and left a message for my doctor in Little Rock and left a message at Dr Mendell's office so I can figure out what he ACTUALLY needs to be sure I am doing what is best for him. I have not gotten a call back from either place yet. I am changing his schedule this week one way or the other. It is just too hard on him and I am not going to work him to exhaustion, that is NOT good for him. I am going to call again tomorrow and do so until someone calls me back for an actual plan from his Dr. Thanks for your input and thoughts!

Ofelia Marin said:
Why do you think he needs all this therapy? Is his speech delayed? What is he doing in PT and OT? It does seem like a LOT to me! Also, my understanding after talking to 2 of the best doctors (Dr. Wong and Mendell) in the field, is that PT is not needed at that early age as long as you learn a stretching routine and do it every day at home. You can have a one time a month appointment (if you really want) when the therapist can check his range of motion and make adjustments to his stretching if needed but one time a week at age 4 seems quite a lot if he doesn't have problems. Did his neuro recommend all these weekly therapies?

JoAnne Hathcoat said:
I agree and appreciate your input. He is doing 1 hr of speech then 1 hr pt on Monday. Then 1 hr ot and one hr pt on Wed. then 1 hr speech on Fri. I think it is too much and when I voice my concern, they make it out like I don't care about getting him what he needs. And this is all after an 8 to 2 school schedule!! I have tried to call my Dr but have not gotten a call back yet. I want him to get what he needs but not over exert him or have them put him on a schedule based on what insurance "will allow and pay". I want to be sure he is getting what HE needs not the billing. Thanks so much for your input.

Susan Rathfelder said:
His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
I agree with the others that this is way too much time for a 4 year old. I would think that 30-45 minute sessions would be the max. If they are back to back, 30 minutes each would be appropriate for his attention span. We did private pt before his diagnosis. After his diagnosis, we learned how to do the stretches at home and discontinued the private pt. Our son now has pt and ot 1x a week through the school system. The therapists help with things that affect school life, are a resource to the teacher, and will help with adaptive equipment (as time goes on). You will also want to keep in mind that not all therapists understand DMD. I about had a heart attack when I discovered (from a friend who works at the school) that Matt's PT was having him climb the steps in the bleachers in the gym. It turns out that climbing steps independently had been written in his IEP as a goal. This was quickly resolved. But, my point is that you may know a whole lot more about DMD than the therapists. Don't let them make you feel guilty if you decide to eliminate some of the therapy. In every situation, you have to do what is best for your child. I wish you well.
Danelle
You can email Wendy King (Wendy.King@nationwidechildrens.org), the senior physical therapist working with Mendell. We just had one appointment last month and she told us that our son (2 yrs old) doesn't need physical therapy at this point, aquatic therapy is what she recommends. She also explained the reasoning why it is not a good idea to overdo it at this point. You can learn the daily stretching routine and then, if you really want, you can go to the PT once in a while to check his range of motion (Mendell's PT also do it 2 times a year so that might suffice at this point). Dr. Wong's PT said the same thing to us, so I feel comfortable with it. Also, 2 hrs a week seems a lot to me even for speech... Is his speech at age level at this point? How do you feel about it? Does he need OT also? It seems way too much therapy for such a little boy!

JoAnne Hathcoat said:
I am so glad to be hearing all of this from other parents. His family physician actually started him in speech therapy before he was even diagnosed with MD. The PT is actually who I finally got to listen to me about something not being right with him and she is who found the MD. The center who is doing his speech got him set up on pt and ot after his diagnosis and while he was not in school it was not an issue. They told me "he qualifies and really needs 2 hours of each a week" but that is what I meant by "what he needs versus what insurance will pay". I feel it is too much too but they make it out like I am not getting him what he needs. I have called and left a message for my doctor in Little Rock and left a message at Dr Mendell's office so I can figure out what he ACTUALLY needs to be sure I am doing what is best for him. I have not gotten a call back from either place yet. I am changing his schedule this week one way or the other. It is just too hard on him and I am not going to work him to exhaustion, that is NOT good for him. I am going to call again tomorrow and do so until someone calls me back for an actual plan from his Dr. Thanks for your input and thoughts!

Ofelia Marin said:
Why do you think he needs all this therapy? Is his speech delayed? What is he doing in PT and OT? It does seem like a LOT to me! Also, my understanding after talking to 2 of the best doctors (Dr. Wong and Mendell) in the field, is that PT is not needed at that early age as long as you learn a stretching routine and do it every day at home. You can have a one time a month appointment (if you really want) when the therapist can check his range of motion and make adjustments to his stretching if needed but one time a week at age 4 seems quite a lot if he doesn't have problems. Did his neuro recommend all these weekly therapies?

JoAnne Hathcoat said:
I agree and appreciate your input. He is doing 1 hr of speech then 1 hr pt on Monday. Then 1 hr ot and one hr pt on Wed. then 1 hr speech on Fri. I think it is too much and when I voice my concern, they make it out like I don't care about getting him what he needs. And this is all after an 8 to 2 school schedule!! I have tried to call my Dr but have not gotten a call back yet. I want him to get what he needs but not over exert him or have them put him on a schedule based on what insurance "will allow and pay". I want to be sure he is getting what HE needs not the billing. Thanks so much for your input.

Susan Rathfelder said:
His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
Thank you all so much! I feel much better knowing I am correct and that I am doing the right thing by eliminating all of these hours of work for him. I think they are basing it on what they can get out of his insurance. I know that may sound harsh but I honestly feel that way. I am going to email Wendy for sure right now..thank you for that resource!
Thanks again to you all...the muscular dystrophy world is somewhat new to me and there is so much to learn.

Ofelia Marin said:
You can email Wendy King (Wendy.King@nationwidechildrens.org), the senior physical therapist working with Mendell. We just had one appointment last month and she told us that our son (2 yrs old) doesn't need physical therapy at this point, aquatic therapy is what she recommends. She also explained the reasoning why it is not a good idea to overdo it at this point. You can learn the daily stretching routine and then, if you really want, you can go to the PT once in a while to check his range of motion (Mendell's PT also do it 2 times a year so that might suffice at this point). Dr. Wong's PT said the same thing to us, so I feel comfortable with it. Also, 2 hrs a week seems a lot to me even for speech... Is his speech at age level at this point? How do you feel about it? Does he need OT also? It seems way too much therapy for such a little boy!

JoAnne Hathcoat said:
I am so glad to be hearing all of this from other parents. His family physician actually started him in speech therapy before he was even diagnosed with MD. The PT is actually who I finally got to listen to me about something not being right with him and she is who found the MD. The center who is doing his speech got him set up on pt and ot after his diagnosis and while he was not in school it was not an issue. They told me "he qualifies and really needs 2 hours of each a week" but that is what I meant by "what he needs versus what insurance will pay". I feel it is too much too but they make it out like I am not getting him what he needs. I have called and left a message for my doctor in Little Rock and left a message at Dr Mendell's office so I can figure out what he ACTUALLY needs to be sure I am doing what is best for him. I have not gotten a call back from either place yet. I am changing his schedule this week one way or the other. It is just too hard on him and I am not going to work him to exhaustion, that is NOT good for him. I am going to call again tomorrow and do so until someone calls me back for an actual plan from his Dr. Thanks for your input and thoughts!

Ofelia Marin said:
Why do you think he needs all this therapy? Is his speech delayed? What is he doing in PT and OT? It does seem like a LOT to me! Also, my understanding after talking to 2 of the best doctors (Dr. Wong and Mendell) in the field, is that PT is not needed at that early age as long as you learn a stretching routine and do it every day at home. You can have a one time a month appointment (if you really want) when the therapist can check his range of motion and make adjustments to his stretching if needed but one time a week at age 4 seems quite a lot if he doesn't have problems. Did his neuro recommend all these weekly therapies?

JoAnne Hathcoat said:
I agree and appreciate your input. He is doing 1 hr of speech then 1 hr pt on Monday. Then 1 hr ot and one hr pt on Wed. then 1 hr speech on Fri. I think it is too much and when I voice my concern, they make it out like I don't care about getting him what he needs. And this is all after an 8 to 2 school schedule!! I have tried to call my Dr but have not gotten a call back yet. I want him to get what he needs but not over exert him or have them put him on a schedule based on what insurance "will allow and pay". I want to be sure he is getting what HE needs not the billing. Thanks so much for your input.

Susan Rathfelder said:
His behavior says a lot. If it is too tiring and he's not enjoying it then you will have a struggle to get him to do it at all. We usually only had PT for enough sessions to teach us the home program and then we did the stretches at home which usually took no more than 1/2 an hour a day. Of course my son was older when he was diagnosed 9 years ago, he was 9. At 18 he refuses to do any stretches at all. I personally think that two hours at a time would be way too much for a four year old. We never had more than one 45 min - 1 hour session once a week.
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.
I think the best advice you can get is from your neuro team. You do go to one of the best neuro teams around. Both Mendell and Wendy King have been in the field for 20-30 years. They see many DMD patients, are involved in clinical trials and wrote tens of articles. You are in very good hands. Each parent can have an opinion based on his/her child's progression which can or cannot be correct. You need to do the best for your son and your neuro team is the one knowing exactly what your son needs at the moment. Good luck!
Hi JoAnne; We had done all the private therapies and then added all the school therapies to that. At one point sitting in the office waiting for Calum to go from the OT, to the Speech I thought this is all we are doing is therapies--where is my son's childhood. We were also paying most of the services out of pocket, so it was very expensive! I decided to go round the gymnasiums and martial arts units. Talked with a lot of them and then found a gymnasium that was willing to accomodate Calum, and a fantastic set of Karate instructors that also concentrated on stretching and balance techniques. Calum was always excited to go to these classes, it was less expensive, and Calum made so many new friends. The instructors were also doing the same stretches as the PT, and they would do it one on one with him, and if they couldn't they would allow me to come and help. It was also great motivation for Calum as he was doing the same thing as other children his age, took away any stigma of therapy. He still gets checked by the CCS, and services from the school. Just something else to think about.
take care
Hello to everyone who is discussing the issues associated with balancing therapy with daily life and the needs of the child. I am a PT who works with this population a great deal. As a norm, most of my kids come between 1 -2 times per month. We focus on education to the parents, I offer have any other people who work with the child (Karate instructors, etc) to come to therapy so that they can learn how to stretch these kids. Most people who are active in the world of childrens fitness know a great deal about the benefits of stretching, but are in need of refinement and education regarding the special needs of these kids. I would recommend caution is just allowing a person in this setting to "take over" because the stretches or activities "look like" what a PT would do in therapy. It is my personal opinion that the parents also need to be parents rather than therapists, and it is the PT's job to help with finding community activities that would benefit these kids so they feel more like kids. Many of the kids I treat wear adjustable night splints, and are taught play positions to increase range of motion, and thier parents and I "check" it weekly. I do recommend stretching for ROM as needed, however, the nightsplints will do a great deal of the prentative work for you. Of course, this only is beneficial with those who are involved and compliant (as it is with any other home program). Also, to address another subject, many kids that I work with also have behavior issues associated with sensory problems. They are not getting as much input through the joints as they did when they had better function, so finding alternative ways to get this input into thier bodies has helped a great deal with behaviors. (just some thoughts) It is really great to hear about what your thoughts as parents are regarding therapies, and it raises questions about how to make things better so that all involved can participate in LIFE rather than therapy.
Thanks!
So glad to see this discussion. We had been doing PT twice a week for my 4 year old son. He seemed to be making progress in his stamina and strength, but I wonder if that's just because his growth was outpacing the DMD. Dr. Wong at Children's Hospital in Cincinnati recommended we do quarterly PT appointments--monthly at the most. My physical therapist adamantly disagrees and says he should do at least twice a month. Such a tough call because there's no great research evidence saying one thing is better than another. But I'm still struggling with whether to add more PT or not. The new guidelines that were published Nov. 30 say things like, low-level strengthening MIGHT help, is used by SOME providers etc. So I worry that more activity means more muscle loss, but that less activity now, when he's ambulatory, may have negative effects down the road. We do stretching every night and he's in his night splints. He goes to swim class once a week, which he loves.

Kristen P. Fields DPT said:
Hello to everyone who is discussing the issues associated with balancing therapy with daily life and the needs of the child. I am a PT who works with this population a great deal. As a norm, most of my kids come between 1 -2 times per month. We focus on education to the parents, I offer have any other people who work with the child (Karate instructors, etc) to come to therapy so that they can learn how to stretch these kids. Most people who are active in the world of childrens fitness know a great deal about the benefits of stretching, but are in need of refinement and education regarding the special needs of these kids. I would recommend caution is just allowing a person in this setting to "take over" because the stretches or activities "look like" what a PT would do in therapy. It is my personal opinion that the parents also need to be parents rather than therapists, and it is the PT's job to help with finding community activities that would benefit these kids so they feel more like kids. Many of the kids I treat wear adjustable night splints, and are taught play positions to increase range of motion, and thier parents and I "check" it weekly. I do recommend stretching for ROM as needed, however, the nightsplints will do a great deal of the prentative work for you. Of course, this only is beneficial with those who are involved and compliant (as it is with any other home program). Also, to address another subject, many kids that I work with also have behavior issues associated with sensory problems. They are not getting as much input through the joints as they did when they had better function, so finding alternative ways to get this input into thier bodies has helped a great deal with behaviors. (just some thoughts) It is really great to hear about what your thoughts as parents are regarding therapies, and it raises questions about how to make things better so that all involved can participate in LIFE rather than therapy.
Thanks!

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