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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.
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.
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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