Forcing PE while they are so exhausted?

[MomWithOCDSon]

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. -___-

 

I had to chuckle derisively at those couple of sentences -- not that you said them, but how true they are. No offense to any physical education teachers among these ranks because I'm sure that you are unbelievably observant and sensitive to challenged kids, knowing what you know from your PANDAS life experiences. But our DS has had nothing but blind and ignorant physical education teachers for the duration of his academic experience to date, and that's been 8 full grades!

 

Last year, when the exacerbation first hit, we actually scheduled a special meeting with the P.E. teacher, the school psychologist and the head of the P.E. Department because the teacher kept downgrading DS via her "rubric" because, in volleyball, basketball, etc., instead of going for the ball, DS would back off and let one of his more enthusiastic, athletic team mates take it. DS's take on it was he isn't very athletic, he'll miss the shot and get scorned or stared at for poor performance, and he's not comfortable scrambling in a group of kids for the ball anyway, so why not do what's best for his team and let someone more capable take the ball and make the shot?! She read it as lack of effort and team spirit, however. Plus, it didn't make her "rubric" for "skills," to which I promptly told her that making a basket wasn't a "life skill," but learning how to advance the best efforts of all the members of your team WAS a life skill, and he should be rewarded appropriately for knowing what best served his team!

 

Then I also explained that he has a condition that makes him anxious, and "mixing it up" with a bunch of other boys stokes his anxiety, so that contributes to him backing off, also.

 

To which this woman actually replied: "He doesn't seem anxious to me. I've seen no signs of anxiety."

 

This, in the midst of an exacerbation that, less than a month later, made him incapable of attending school at all! I wanted to throttle the clueless wench.

[kimballot]

 

 

Then I also explained that he has a condition that makes him anxious, and "mixing it up" with a bunch of other boys stokes his anxiety, so that contributes to him backing off, also.

 

To which this woman actually replied: "He doesn't seem anxious to me. I've seen no signs of anxiety."

 

This, in the midst of an exacerbation that, less than a month later, made him incapable of attending school at all! I wanted to throttle the clueless wench.

 

Did you say "I know you haven't seen any signs of anxiety. That is the point of this meeting... to inform you of his signs of anxiety!! " too funny!

[EmersonAilidh]

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. -___-

 

I had to chuckle derisively at those couple of sentences -- not that you said them, but how true they are. No offense to any physical education teachers among these ranks because I'm sure that you are unbelievably observant and sensitive to challenged kids, knowing what you know from your PANDAS life experiences. But our DS has had nothing but blind and ignorant physical education teachers for the duration of his academic experience to date, and that's been 8 full grades!

 

Last year, when the exacerbation first hit, we actually scheduled a special meeting with the P.E. teacher, the school psychologist and the head of the P.E. Department because the teacher kept downgrading DS via her "rubric" because, in volleyball, basketball, etc., instead of going for the ball, DS would back off and let one of his more enthusiastic, athletic team mates take it. DS's take on it was he isn't very athletic, he'll miss the shot and get scorned or stared at for poor performance, and he's not comfortable scrambling in a group of kids for the ball anyway, so why not do what's best for his team and let someone more capable take the ball and make the shot?! She read it as lack of effort and team spirit, however. Plus, it didn't make her "rubric" for "skills," to which I promptly told her that making a basket wasn't a "life skill," but learning how to advance the best efforts of all the members of your team WAS a life skill, and he should be rewarded appropriately for knowing what best served his team!

 

Then I also explained that he has a condition that makes him anxious, and "mixing it up" with a bunch of other boys stokes his anxiety, so that contributes to him backing off, also.

 

To which this woman actually replied: "He doesn't seem anxious to me. I've seen no signs of anxiety."

 

This, in the midst of an exacerbation that, less than a month later, made him incapable of attending school at all! I wanted to throttle the clueless wench.

 

My personal favorite was when I was trying to get a transfer to one of the "white" highschools in my district. Better teachers, better funding, better school in general. You get the drill.

 

My Mom sat down with the head of student affairs for my district & explained my situation to her. This was only a couple months after the Narcoleptic symptoms set in, I was sleeping sixteen hours a day & definitely needed a change of scenery if I was expected to survive my freshman year.

My Mom brought papers about P.A.N.D.A.S., letters from neurologists, physicians, psychologists, all explaining that stress would make me nothing but worse. My Mom explained to this woman, whose name was Karen, that this was the second worst exacerbation we had ever been through, & that if I ever needed to be around people who understood my condition & knew how to handle me, it was now. It wasn't about being around my friends for fun or anything, I ended up going to one of the "white" schools anyway & slept through an entire semester, it was the if factor. IF something happened at the school that I was supposed to go to, I had no one. IF I had a meltdown, IF I passed out, IF I started hallucinating... No one would be there. As helpful as teachers & faculty are, you can't inform EVERYONE & expect them to always be around, especially in schools as colossal as the ones in our district.

This woman didn't so much as blink when she took off her glasses, turned in her chair, looked my Mom in the eye & said "Erica, I had a sweating problem in highschool. Your daughter needs to learn to make friends just like I had to."

 

When the story was relayed to me I just kept thinking thank GOD I wasn't in the room. Needless to say, my transfer was denied. Looks like P.A.N.D.A.S. is really just a socializing problem, you guys. This student affairs lady (along with your PE coach) obviously know better than all the doctors, of course.

[EAMom]

 

 

 

 

 

 

This woman didn't so much as blink when she took off her glasses, turned in her chair, looked my Mom in the eye & said "Erica, I had a sweating problem in highschool. Your daughter needs to learn to make friends just like I had to."

 

 

 

LOL!

[Priscilla]

As for alternative fitness, I believe in free play. I was just discussing this with someone (can't remember who uggh) But children need "unstructured play". You need to find something your child enjoys... walking, hiking, biking.. My dd 8 surfs (her dad and I too, so we do it together) but beyond that, she has told me "all my problems go away when I am in the water" Swimming is always a favorite. If you live where it gets cold, look into an indoor pool at a local college, you may even be able to set something up for a free swim therapy. Just some other ideas that may be fun: skateboarding, roller skating (outside or rink) snowboarding/skiing, climb trees, wakeboarding, jumprope, hula hoop,... make it fun, not too focused on an "exercise routine", play games.."I'll race ya.. Just take a lot of little opportunities instead of focusing on long rigorous exercise if you have to. I hope that helps, we have been fortunate that dd still likes to do alot of physical things, almost too much

[PhillyPA]

For the cold weather months, if your child is able, I recommend skiing. There are special need instructors who will teach and spot your child as they learn to ski.

[momcap]

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.

 

Kimballot, what are C3d levels? I have a lot to learn about the immune system. When we see the pediatrician in October I want to ask for a full immune work up. I think I need to ask for very specific tests or I won't get anything useful. Do you have any suggestions? I asked for a referral to an immunologist, but got referred to a juvenile rheumatologist instead. Should I go back and demand an immunologist? I'm also worried about Lyme from all those walks in the bush. I was told by our naturopath that lyme tests in Ontario always come back negative and lyme tests in California always come back positive, so there is no useful testing available. I don't know what to make of that comment. I was thinking about IGENEX, but after the naturopath's comment, and then reading Dr. T's comments on it I just don't know if I want to spend the money on something that could possibly give a false positive and won't be taken seriously by doctors.

[momcap]

 

 

 

 

 

 

This woman didn't so much as blink when she took off her glasses, turned in her chair, looked my Mom in the eye & said "Erica, I had a sweating problem in highschool. Your daughter needs to learn to make friends just like I had to."

 

 

 

Sounds like a scene from Glee. Maybe we can get them to do a PANDAS episode. LOL!

[pixiesmommy]

You guys crack me up. PANDAS could be hilarious on Glee!

 

Also, she ran the mile yesterday in 10:33 and said she was not the last one to finish. She said they all ran together- 2nd grade thru 5th grade. She did seem more exhausted this morning and I had to almost physically remove her from bed to wake her up. We are in the process of getting a 504, which, as the year goes on, looks really necessary across the board.

 

Thanks for all the feedback! I love the thread hijacks- keep "running" with it- ha!!