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almost a year for lots of us


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I was just reading that a bunch of you are around the one year mark of your children getting sick. Same for me. It is a horrible time when you realize it has been a whole year of your kids life, and everything they have been through. It is helpful to know that others are going through the same thing.

 

I was also wondering how some of you deal with school issues? you know the school nurse, bad days, needing to come home.......

I am very frustrated, they just dont GET IT!

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I was also wondering how some of you deal with school issues? you know the school nurse, bad days, needing to come home.......

I am very frustrated, they just dont GET IT!

 

I personally have a voodoo doll of both the school nurse and the school principal, and a box of long, sharp hat pins I use to "channel" my frustrations! :angry:

 

I try to work under the radar and forge good relationships with the teachers. The administrators will never get it, at least not in my town. They see "accommodations" as a legal word and $$$. The teachers mostly just want to help my son learn.

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Hi. Even though I've been dealing with PANDAS since Sept 2008, it has just passed the one year mark since our last strep triggered exacerbation. That was the one where all 3 of my kids got strep. The first time for my 2 non-PANDAS kids. So, it's very likely that was a strain that year that got a lot of us.

 

As for school, I spoke with teachers, slp (my son gets services for speech through the school) and the prinicpal. I asked the principal to ask the school health aid to call me when strep hit my PANDAS son class or my non-PANDAS son class. They have been good about it.

 

One link that's some have found helpful in getting the school to kind of understand it is...

 

http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

 

Finally, you can seek out a 504 plan for OHI (Other Health Impairments)that would specify your child's unique needs and protect them. If you can the dx of PANDAS by a doc in writing, you can get it for PANDAS.If you don't, you can seek it under a different diagnosis such as OCD. Even though your child may not have classic OCD, sometimes you just have to play by the rules and bite your tongue to get what your child needs.

Edited by Vickie
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My DS13 started out with a 504 Plan for Other Health Impairment Issues relative to his OCD when he was in third grade. Interestingly enough, it was the SCHOOL that wanted the plan, basically so that he could be allowed to take the state's standardized testing in an untimed setting . . . all the better for the school's scores in the end!

 

This year, with the exacerbation that hit at the end of the last school year, the school psychologist actually encouraged us to move it up from a 504 to an IEP so that DS could have "services on-site," like a case-worker and a weekly social worker session, even though they knew we'd gone to significant expense and trouble to acquire private help for him outside the school setting.

 

So I am always amazed when I hear stories about families who are denied opportunities for 504's or IEP's because their kid doesn't "fit" any of the check-boxes! And I don't think it was just that we have a "stellar district," either, as I know another family in our same system who has been fighting for a couple of years now to get some accommodations for their son who is impaired in some ways but, at the same time, obviously intellectually gifted. It sort of gives me a reality check about my own DS . . . about how badly his symptoms must've been affecting him in the school environment that they would so readily suggest these steps . . . rather than making us fight for them! Living with him every day, I think we get accustomed to some of the "eccentricities," rather than always acknowledging them as challenges, especially in a school setting.

 

That's not to say I haven't met my match with some individual teachers or administrators, too, though! LLM, I might borrow your voodoo doll technique! There's always that one teacher/administrator who thinks you're just making excuses for your kid, expecting him to be excused from obligations that he should be held to, etc. Especially when the kid is intellectually strong, which it appears many of our kids are! In the end, I think what's helped us a good bit in our system is the continuity; we've been in this district from the beginning, so some of the staff and administration have seen DS during completely unimpeded periods, and then they've seen him at his worst, as well. So, even to the most cynical, it was hard to deny that he hadn't experienced a real "mountain to climb" in terms of his disorder and the steps needed to help him get through it.

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thanks guys, I will check out that link, and maybe send it to them. I got an iep no problem because they cant argue with a doctors diagnosis. Its the nurse and the counseor that are the problem. I kept friendly, but they crossed the line. They keep refusing to let her go home, and make her comromise. They see it as though she has anxiety, and she is trying to run away from it, and they think they are doing the right thing. well, a couple days ago i lost it, when I finally got to pick her up, she looked horrible!!! I sent an email to them firmly telling them i dont want it to happen again. no one replied. when i saw the nurse, she said she put in a call to her doc to see what she thinks! horrible. they dont care what i say. I think i should get a voodoo doll tooo.

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Personally, I don't think it's appropriate for the school nurse (or is it just a health aide) to call your child's doctor for that.

 

With PANDAS and PITAND, reasoning is gone. A PANDAS child, while in an exacerbation, often cannot compromise, be bribed, or be threatened with being punished. It just won't work. It's one of those things...unless you live it, you just don't understand.

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thanks guys, I will check out that link, and maybe send it to them. I got an iep no problem because they cant argue with a doctors diagnosis. Its the nurse and the counseor that are the problem. I kept friendly, but they crossed the line. They keep refusing to let her go home, and make her comromise. They see it as though she has anxiety, and she is trying to run away from it, and they think they are doing the right thing. well, a couple days ago i lost it, when I finally got to pick her up, she looked horrible!!! I sent an email to them firmly telling them i dont want it to happen again. no one replied. when i saw the nurse, she said she put in a call to her doc to see what she thinks! horrible. they dont care what i say. I think i should get a voodoo doll tooo.

While I don't agree with the way they're handling it, I do get where they're coming from. I got the same "company line" from my son's school earlier this year when he was really sick and couldn't manage to stay in class for more than a few minutes at a time. He would beg me every morning not to send him to school, but the school psychologist, his private CBT therapist at the time . . . basically everyone I consulted . . . was concerned that if we didn't somehow "compromise" with him to get to school and keep him there, he would only become increasingly "school-phobic," and his fear and anxiety over being there would just grow, rather than settle.

 

Interestingly enough, it was our psychiatrist -- who doesn't buy much, if any, of the PANDAS information -- who ultimately told me he shouldn't go back to school in his current state. To quote, "You can't throw a drowning kid back into the pool without a life preserver, and right now, we haven't found a life preserver that's doing the job adequately." He was, of course, referring to psych meds. But in the end, it was the antibiotics that became his life preserver.

 

I do agree with Vickie that, in the midst of an exacerbation, our kids don't have enough reasoning power at their disposal to just slog through it in an environment (like school) that makes them fearful and anxious; I also know from experience, however, that removing them from that situation or place for a period of time tends to confirm and validate those irrational fears somehow so that, even with a fresh start and a fresh grasp on life encouraged by PANDAS treatment, they may still need some help getting back into the swing of things and getting back into the school setting on a full-time basis again.

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I agree that there's a fine line between being understanding and reinforcing the fear and giving the OCD (if that is the reason ) more strength.

 

With my son, even if I knew darn well he wasn't making it to school that day, I went through the whole routine of getting him ready, eating breakfast, having lunch ready to go. Often we didn't make it out the door, then there were times we at least got in the car and drove to the parking lot of the school. I always tried to have the mentality that you never know if that's the day when an accomplishment would be made and the opportunity for that to happen had to be there.

 

I do agree with Vickie that, in the midst of an exacerbation, our kids don't have enough reasoning power at their disposal to just slog through it in an environment (like school) that makes them fearful and anxious; I also know from experience, however, that removing them from that situation or place for a period of time tends to confirm and validate those irrational fears somehow so that, even with a fresh start and a fresh grasp on life encouraged by PANDAS treatment, they may still need some help getting back into the swing of things and getting back into the school setting on a full-time basis again.
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Like Vickie mentioned, it's the irrationality that really sucks. There is no amount of reason, or punishment, or consequences that will cause them to cooperate. You just get to stand there and watch them make stupid stupid mistakes. My son's first ordeal with this was fall of 2007, he was 10. Now at age 13, having a younger child to deal with is DEFINITELY easier. Younger, smaller children, still have that 'fear' of parents (not a physical fear but that need to please parents and fear of what will happen if they don't). Teenagers, by nature, know that there's really nothing parents can do about it. That gives them a lot of power. They feel they can do what they want and their parents should not have a say in it. Plus when he was 10 if it got right down to it I would just pick his little butt up and plop him over my shoulder and take him where I needed him to go. Now, at 170 pounds and as tall as me, that's impossible. So I just get to sit there and let him physically, mentally, and emotionally abuse the snot out of me. Consequences mean nothing to them. You can lead a horse to water......

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when i saw the nurse, she said she put in a call to her doc to see what she thinks! horrible. they dont care what i say.

 

They are not allowed to do this without your permission and your child's doctor is not allowed to discuss your child with anyone w/o your permission. I NEVER let school communicate with my child's physicians. If they need a note from the doctor- I get it for them. In fact, I'll get the notes in advance, so they'll be covered legally and will have no excuses.

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