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Old 09-18-2006, 05:36 PM   #1
Dagny
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How much therapy is "enough" for 2yo with mild CP?

My son is 2.3 years old and has mild cerebral palsy. He is primarily hypotonic; he walks only with a toy walker and slouches dramatically when sitting (often losing his balance if he is doing something with his hands like motions to songs).

I know there is no right answer, but I would love some input on how much therapy he "should" be getting. (Being hypotonic, most of what he needs therapy-wise is strength-building exercises and encouraging balance).

Per his developmental pediatrician and PT, he goes 1-2 times/week for PT, 1 time for OT. (He has just "tested out" of speech therapy.) I get conflicting answers from them on how much therapy to do with him at home.

On one hand, sometimes I get so overwhelmed with our situation that I close down and we'll go a whole week doing no therapy at home (HORRIBLE, I know).

On the other hand, knowing what I do about how plastic the brain is before age 3, and how the brain can make compensatory repairs after damage, I usually feel like even if I did "therapy" with him every waking moment, it would barely be enough.

The therapy is like play to him; I use music, toys, games. etc.

I also wonder if I should be getting him more outside therapy. I'm not sure how much of our ped/PT's recommendations are considering what insurance is likely to cover & how many visits are "convenient" for the family vs. what's strictly best for DS.

Would appreciate insight and advice. Thanks.

 
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Old 09-19-2006, 12:13 AM   #2
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Re: How much therapy is "enough" for 2yo with mild CP?

When I was a small child, I went to PT twice a week. But on the other hand I didn't go to OT or speech therapy.

IMHO you sound a little overstressed about the home therapy. I must confess that my family was relatively lazy with those home exercises that were prescribed for me - partly because they did not have time or energy, partly because they felt that exercising 24/7 would make me lose the normal childhood.

Remember that CP is not any ultraserious condition like cancer for example, where little slips could prove fatal. It does not destroy everything if your child is without exercises for a week.

But your approach of making home therapy playful sounds very beneficial.

Last edited by Strawberry1; 09-19-2006 at 01:19 AM.

 
Old 09-19-2006, 04:43 AM   #3
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Re: How much therapy is "enough" for 2yo with mild CP?

My daughter has cerebral palsy - the spastic diplegia form of it and is moderately affected.She's two and a half, and can only crawl and pull herself to stand using furniture. Here in Ireland she gets seen by a physio maybe once a month if im lucky ,, and otherwise I don't get any help with her.

 
Old 09-19-2006, 11:35 AM   #4
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Re: How much therapy is "enough" for 2yo with mild CP?

Quote:
Originally Posted by Dagny

On the other hand, knowing what I do about how plastic the brain is before age 3, and how the brain can make compensatory repairs after damage, I usually feel like even if I did "therapy" with him every waking moment, it would barely be enough.
I think that you should try to find ways of making his everyday life more "therapeutic" for him: try to find games, toys, furniture etc. that prevent bad body positions and increase strength and balance. Separate PT sessions tend to be boring for the child.

For example, could something be done to prevent that slouching in the chair?

 
Old 09-20-2006, 09:38 PM   #5
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Re: How much therapy is "enough" for 2yo with mild CP?

Quote:
Originally Posted by Dagny
I know there is no right answer, but I would love some input on how much therapy he "should" be getting.

Would appreciate insight and advice. Thanks.
Well, all I can tell you is my personal experience as the one with CP. I walk, have balance issues and a lot of tight muscles in my face, back legs and hands. I have a weak trunk but at this point I'm sure that is laziness on my part.

When I was really young (2-3) I was in E.I. through the school district. I remember having PT and OT several times a week. By the time I was in Kdg.-1st grade, I was doing 3 PT sessions and 1 or two OT sessions. I really have NO idea how long this all lasted (per session) but I'm sure it wasn't very long because little kids can't handle the same thing for a very, very long time.

After that I went to PT for anywhere from 30 to 90 minutes once a week from age 7 to 14. (And the longer sessions were purely my own doing, in middle school my PT doubled as my unofficial talk therapist, and she pretty much let me decide when I wanted to go back to class and we talked while worked a lot and if I wasn't done talking we kept talking I just had to keep excercising, lol.)

 
Old 09-21-2006, 01:51 PM   #6
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Re: How much therapy is "enough" for 2yo with mild CP?

My son was also diagnosed as mild. We had PT and OT once a week and worked with him a lot at home. At home we'd do about 1 to 1.5 hours a day over two sessions. It slowed down once he went to school. Now that he's 12, he sees the therapists every other week but does his own stretching and exercises at home.

 
Old 09-22-2006, 10:02 AM   #7
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Re: How much therapy is "enough" for 2yo with mild CP?

Thanks SO MUCH to everyone for your responses.

Strawberry1, you mentioned that I seem "a little overstressed about the home therapy" -- that's what my psychologist says, too!

The problem is that, even though I agree with you in theory that while it's not "fatal" or "destroying everything" if he misses exercises for a week, I can not let go of the idea that less therapy might mean less (or "less good") results, and that it's me making that decision for my son (vs. me making that kind of decision for myself).

For example, if I wanted to lose 100 pounds, a doctor might tell me that I should change my eating habits and exercise regularly.

The response I get when I ask DS's therapists about "how much therapy is enough" is along the lines of "well, we just tell parents that whatever fits in with your lifestyle is fine."

But I wonder if that's like telling the person who wants to lose 100 pounds that just skipping desert and walking twice a week will be "enough." It MIGHT work, eventually, but it seems logical that a more sensible diet plan and more regular, intensive exercise would help MORE and help the person achieve their goal FASTER.

The research just seems to muddy the issue more. There are so many "initial" studies showing potentially positive results that I could sign DS up for an intensive program that lasts a few weeks (but which one? Again, the research is inconclusive.), I could start him on hippotherapy, aquatic therapy, integrated listening therapy, interactive metronome, NDT, craniofacial therapy, TheraTogs ... the list just goes on and on, which brings me back to my original question -- how much is "enough"? (Again, I know there is no right answer, but I sincerely appreciate everyone's feedback.)

 
Old 09-22-2006, 10:04 AM   #8
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Re: How much therapy is "enough" for 2yo with mild CP?

I do, also, work on making his home environment therapy-friendly. About 50% of the time, I let him play however he wants, and about 50% of the time it's therapy-directed positioning and/or play, with appropriate chairs, boosters, etc.

 
Old 09-23-2006, 08:57 PM   #9
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Re: How much therapy is "enough" for 2yo with mild CP?

Hi, i would just like to say, I to have mild cp, and now at age 20, i wish my parents made me do more excersises then they had. Be persistant because it will help

 
Old 09-25-2006, 10:03 AM   #10
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Re: How much therapy is "enough" for 2yo with mild CP?

Quote:
Originally Posted by Dagny
The response I get when I ask DS's therapists about "how much therapy is enough" is along the lines of "well, we just tell parents that whatever fits in with your lifestyle is fine."
The therapists probably mean that all families don't necessarily have any choice. For example, a single parent with a full-time job, or a family with many children do not have many opportunities for home exercises.

Quote:
Originally Posted by Dagny
But I wonder if that's like telling the person who wants to lose 100 pounds that just skipping desert and walking twice a week will be "enough." It MIGHT work, eventually, but it seems logical that a more sensible diet plan and more regular, intensive exercise would help MORE and help the person achieve their goal FASTER.
Good points. But you have to remember, that when you make your son exercise, you are achieving *your* goals - and his goals may be totally different. Most disabled children are happy about themselves, they don't necessarily want any change. And IMHO the physiotherapy has a hidden message "Your body is bad and broken, we don't accept you such as you are. You need to exercise a lot, but you will still remain more or less broken".
So you must not concentrate only on his physical fitness, but on the psycho-social development also. His life should not revolve around his disability and exercises.

Quote:
Originally Posted by Dagny
The research just seems to muddy the issue more. There are so many "initial" studies showing potentially positive results that I could sign DS up for an intensive program that lasts a few weeks (but which one? Again, the research is inconclusive.), I could start him on hippotherapy, aquatic therapy, integrated listening therapy, interactive metronome, NDT, craniofacial therapy, TheraTogs ... the list just goes on and on, which brings me back to my original question -- how much is "enough"? (Again, I know there is no right answer, but I sincerely appreciate everyone's feedback.)
I've noticed that there is a lot quackery around CP. I'm not a medical expert, but I think that at least hippotherapy and aquatic therapy are relatively reliable methods and have a solid background in mainstream medicine.

But the most important thing is that you don't force your son to do anything that is extremely frightening or repulsive for him. For example, there is no point with hippotherapy, if the child never learns to like horses.

Summa summarum: the most salient thing is that the child is motivated.

Last edited by Strawberry1; 09-25-2006 at 11:15 AM.

 
Old 09-30-2006, 06:47 PM   #11
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Re: How much therapy is "enough" for 2yo with mild CP?

Quote:
Originally Posted by Strawberry1
Good points. But you have to remember, that when you make your son exercise, you are achieving *your* goals - and his goals may be totally different. Most disabled children are happy about themselves, they don't necessarily want any change. And IMHO the physiotherapy has a hidden message "Your body is bad and broken, we don't accept you such as you are. You need to exercise a lot, but you will still remain more or less broken".
So you must not concentrate only on his physical fitness, but on the psycho-social development also. His life should not revolve around his disability and exercises.
Excellent, excellent point. Since you posted that, I've been doing a lot more reading on this board's archives and online about being an older child or adult with disabilities, and my husband and I have talked a lot about it. For now, we're going to continue doing as much therapy as we can (as long as it remains fun for him) with the idea that it MAY improve his future functioning, but we will be careful to take cues from him as he gets older.

Thanks for the new perspective, sincerely.

Last edited by Dagny; 09-30-2006 at 06:51 PM.

 
Old 10-01-2006, 10:45 AM   #12
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Re: How much therapy is "enough" for 2yo with mild CP?

Quote:
Originally Posted by Dagny
For now, we're going to continue doing as much therapy as we can (as long as it remains fun for him) with the idea that it MAY improve his future functioning, but we will be careful to take cues from him as he gets older.
.
On the other hand, sometimes you *have* to force your child to do something, because he can't see what will be good for him in the long run. Fun can't be the only guideline. Basically, some form of exercise should continue throughout his whole life, it's more important for him than for a typical able-bodied person. But it should not swallow his whole time; ideally it should be incorporated in his hobbies and daily activities, and arranged in a way that is as pleasant for him as possible.

 
Old 10-09-2006, 06:22 PM   #13
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Re: How much therapy is "enough" for 2yo with mild CP?

Hello Dagny,
I'm new on this board, but have read it for quite some time.
I'm a mom with a 3 1/2-year-old son with mild spastic diplegia. What type of CP does your son have?
I've had the same questions and concerns as you've had. My son Noah has had several different PT's over the last couple of years. I've noticed that they seem reluctant to tell me how much stretching/exercising per day would be most beneficial for him. I've discovered that if I ask them specific questions, they'll give me more informative answers. For instance, when he was younger, I asked her "If he was your son, how many times a day would you stretch him?" or "Is there any research that shows how many hours a day one should wear the knee immobilizers for them to be effective?"
My guess is that they don't want to stress us all out, and want it to be our own decision as to how much therapy we do at home with our kids.
Good luck to you!

 
Old 10-09-2006, 10:50 PM   #14
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hello and welcome

Hello nwmom and welcome to the Board!!Please feel free to join in/ ask questions/ share knowledge- experience- advice, and even vent if needed. We're all here to help each other!
Hope you have a great day!! becky

 
Old 10-12-2006, 06:41 PM   #15
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Re: How much therapy is "enough" for 2yo with mild CP?

Thanks rhales199!
This is a wonderful board in so many ways, and I'm glad to have heard about it.

 
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