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Forcing PE while they are so exhausted?


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I struggled with this in school, and now I see Pixie struggling with it. They are being made to run a mile today. She hates to run, and physically I was never ABLE to do it- I would get cramps or my throat would burn from breathing so hard and I would get a cold sweat and feel like I was going to vomit and/or faint. And still the gym teacher would yell to keep going.

 

I know she is getting yelled "at" in PE to not jog already when they run the 1/2 mile and she was dreading today. I didn't write her out though. I don't want to get her issues too conflated with mine, ya know? But she was sitting there looking depressed with bags under eyes when she woke up and talking about dreading this run.... it just broke my heart.

 

What do you do when confronted with things like this where you know your PANDAS child will be put under extreme physical pressure? Do you try to get them excused, or try to go with the flow and see how they do?

 

I feel so torn. :( I hope I am doing the right thing by letting her try to get through it on her own. She doesn't want to be different, but then again, she IS. And she seems to be headed downhill a bit lately too, which makes me think that exertion on top of THAT can't be good thing. Ugh.

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How old is Pixie and what grade is she in? Does she have a 504 Plan or an IEP at school, or has the school been willing, up to this point anyway, to grant her some accommodations even without a formal plan in place?

 

I would ask for an alternative activity for the running. If her endurance is compromised by her medical condition, then that's an entirely fair request.

 

Our DS13 actually has an alternative activity to P.E. entirely, through his IEP. He has an "at home" exercise program and reports that activity via a log to the health teacher, but he does not participate in P.E. classes during the school day due to the extra stress that accompanies that particular undertaking.

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Hi

 

I can definitly chime in here.I am a PE teacher and have been for 18 years..All you have to do is write a note stating that pixie cant participate in PE the day of the mile run.She can make it up at a later date or you can have her medically excused from any aerobic activity.I yell too !! But we are very concerned about the health of all the students..Call the PE teacher and explain the situation.

 

Melanie

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We have also had the PE blues! This brings up a bigger question for me... and that is physical fitness in our kids. I know my son had horrible joint pain, but he also became very physically UNFIT over the last year with his most recent exacerabation. We got rid of the infection finally, and now are working to get him back in shape. We did a PT eval and are working on a fitness program.

 

Has anyone else tried to address physical fitness with your kids? I wonder if one of our non profit websites should have suggestions for fitness.. I am wondering if this is something that physical therapists or fitness instructors or PE teachers might be able to help with... Anyone out there interested?

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Personally, if it were my dd, I would not write a note to get her out of it, based on the info in this post alone. Perhaps if she were in an exacerbation and had sore joints, etc I would? And even then I'm not sure if I would. I guess it would depend on severity of symptoms at the time.

 

But just because my dd didn't like it, I would not write a note.

 

Along with kimballot, I am trying to help my dd get more physically fit after several years of very difficult pandas symptoms, some of which kept her homebound and she got very little exercise.

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Whenever my 8 year old son is in peak PANDAS form, I take him to the track to run. He loves it. Or, I will take him to the park for a bike ride (he did 7 miles two weeks ago!). Last year I got him 12 personal training sessions. I thought it would help him take his mind off of his troubles. Every kid is different. I am sure that I project my feelings on my son. I know that when I feel like crap, if I go for a run, I feel better. My son loves to exercise so I use this to relax him. I am sure that everyone on this forum has exercised at some point in their lives even when they don't feel like it. Remember how good you felt when you were done? That is the feeling I want my son to have. The feeling of good endorphins.

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We have this problem too. DS(7) wants to fit in with the other kids, but gets pains when he runs. The PE teacher keeps telling him that he just needs to run more and he's getting runner's cramps. I agreed with her that more exercise would help build endurance, but I think there is more to it for him. He used to be very athletic, now he just wants to sit on the couch. When he was 2 & 3 we would walk in the bush for hours. We walked, he ran circles around us and never once wanted to be carried. Our friends often commented on his limitless energy. When he started soccer he was asked to play in a league with kids 2-3 years older than him because he was too competitive and had the ball the entire game. Now he goes to soccer and asks to play goalie so he won't have to run. But they don't want him in goal because he thinks the ball has germs so he won't touch it. He looks ill and doesn't want to go at all. He can't run at recess without getting chest pains, leg cramps or a stomach ache. He desperately wants to play boot hockey, or soccer at recess because this is the only time he fits in socially. Now he can't even do that. The other night he sobbed on my shoulder because the other kids can run and it's not fair.

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I struggled with this in school, and now I see Pixie struggling with it. They are being made to run a mile today. She hates to run, and physically I was never ABLE to do it- I would get cramps or my throat would burn from breathing so hard and I would get a cold sweat and feel like I was going to vomit and/or faint. And still the gym teacher would yell to keep going.

 

I know she is getting yelled "at" in PE to not jog already when they run the 1/2 mile and she was dreading today. I didn't write her out though. I don't want to get her issues too conflated with mine, ya know? But she was sitting there looking depressed with bags under eyes when she woke up and talking about dreading this run.... it just broke my heart.

 

What do you do when confronted with things like this where you know your PANDAS child will be put under extreme physical pressure? Do you try to get them excused, or try to go with the flow and see how they do?

 

I feel so torn. :( I hope I am doing the right thing by letting her try to get through it on her own. She doesn't want to be different, but then again, she IS. And she seems to be headed downhill a bit lately too, which makes me think that exertion on top of THAT can't be good thing. Ugh.

I don't know, but I think in our kids case, exercise is good only as long as it makes then feel good. Getting stressed out is NOT good. Also, given my ds's health issues, the doctor said yes he can exercise, but not to the point of exhaustion. He plays travel soccer because he loves it, but if his knee is hurting or he's feeling wiped-out, I have him stay home. I really don't see point in pushing them.

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I struggled with this in school, and now I see Pixie struggling with it. They are being made to run a mile today. She hates to run, and physically I was never ABLE to do it- I would get cramps or my throat would burn from breathing so hard and I would get a cold sweat and feel like I was going to vomit and/or faint. And still the gym teacher would yell to keep going.

 

I know she is getting yelled "at" in PE to not jog already when they run the 1/2 mile and she was dreading today. I didn't write her out though. I don't want to get her issues too conflated with mine, ya know? But she was sitting there looking depressed with bags under eyes when she woke up and talking about dreading this run.... it just broke my heart.

 

What do you do when confronted with things like this where you know your PANDAS child will be put under extreme physical pressure? Do you try to get them excused, or try to go with the flow and see how they do?

 

I feel so torn. :( I hope I am doing the right thing by letting her try to get through it on her own. She doesn't want to be different, but then again, she IS. And she seems to be headed downhill a bit lately too, which makes me think that exertion on top of THAT can't be good thing. Ugh.

 

 

I do know that prolonged, heavy physical exertion like running a marathon can decrease immune function very significantly. Moderate exercise is supposed to be beneficial to the immune system. I'm just wondering if in a pandas kid who is exhausted by running a mile, if a mile is like a marathon to her body? I would be worried about it too.

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Our school is doing that mile thing too. They are supposed to do it in under a certain time (11 minutes? I don't remember).

 

Dd isn't too concerned. She told me "oh, I didn't make it in time b/c a stopped to talk to Shannon." Ha ha. I love that attitude :) (And I love that she's having friends!)

 

But my neighbor's dd finds it very stressful and says kids make fun of you if you don't go fast enough :(

 

I don't have problem with the exercise, but they should do it in a way which isn't stressing out the kids so much. Can you talk with the principal and pe teacher and work something out? Maybe they can change their techniques so pixie still runs without the pressure?

 

It kind of bums me out that so many kids end up hating pe...

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He used to be very athletic, now he just wants to sit on the couch. When he was 2 & 3 we would walk in the bush for hours. We walked, he ran circles around us and never once wanted to be carried. Our friends often commented on his limitless energy. When he started soccer he was asked to play in a league with kids 2-3 years older than him because he was too competitive and had the ball the entire game. Now he goes to soccer and asks to play goalie so he won't have to run. But they don't want him in goal because he thinks the ball has germs so he won't touch it. He looks ill and doesn't want to go at all. He can't run at recess without getting chest pains, leg cramps or a stomach ache. He desperately wants to play boot hockey, or soccer at recess because this is the only time he fits in socially. Now he can't even do that. The other night he sobbed on my shoulder because the other kids can run and it's not fair.

 

 

This sounds so much like my son!! He is doing better now, but when he was a the peak of his exacerbation his c3d level was 55 (normal range 0-8). My understanding is that those immune complexes cause joint pain similar to rhematoid arthritis. I am still giving him lots of ibuprofen.... Have a doctor apt. next week and we will see if his C3ds have come down with 6 months of antibiotics and sinus surgery.

 

I really wonder if someone out there would be interested in studying our kids and developing some sort of guidelines for physical fitness to help prevent the physical decline with exacerbations.

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I stopped participating in PE in the sixth grade. So much twitching that running was impossible, & once that became manageable the joint pain set in.

I've found that most teachers won't dare argue with something like twitching. Does she tic? If so, that could be to y'all's advantage.

& also, has she run before? If so, has she expressed concerns with the coaches or have they noticed difficulties? If she hasn't mentioned it & they haven't been paying attention it could be harder because they could pull the whole "WELL, she's seemed fine so far!" card, which is all too common. -___-

With us it was as simple as a note everyday. They knew about my underlying condition, but even on sPed days I would be put in regular PE & I ALWAYS had a note from Mom telling them not to make me participate. I don't know where you guys are but here in Texas PE is barely (if ever) enforced. The second semester of my eighth grade year, my PE credit was "Extreme Cup Stacking". Yes, just as AWESOME as it sounds, hahah. ;)

PE typically gets easier as they get older. There are lots of alternatives when it comes to high school (I take Partners for PE where I help the sPed kids with their PE) & more often than not they don't have to do it every year. Here it's only one. In the elementary & intermediate schools they're just trying to drive "PHYSICAL FITNESS" into us & take it a little too serious. More often than not, ESPECIALLY down here, it gets easier as the years go by & the teachers care less & less about actual participation.

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I was just wondering the same thing about dd9 this week. She has PE 3 days a week now and they run too. Her gym teacher is really a high pressure kind of guy. I have decided to let it go for now but if I see that she is really struggling I will probably discuss with her doctor.

 

Susan

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