I HATE THIS!

[thereishope]

I think what you recieve at an IEP mtg is different in each state. I live in Ohio. My son has an IEP for speech. I don't recall getting a 'Procedural Safeguards Notice" but we get a booklet entitled something like "Who's I.D.E.A." or something similar. It's their "bible" that they hand out at every mtg.

 

I agree that you can receive accomodations for workload and special accomodations for testing.

 

School districts give you minimum. You need to always request more, and then you try to find midde ground.

 

What is his IEP for? This can make a big difference in what you get.

 

Sometimes, and this you'd have to fight for, if the district does not have someone who can go out to your house, the district may reimburse if you coordinate for someone to come.

[kimballot]

HI - just set a PM so you will get a larger history on my son.

It's not that the school system is doing nothing for our son, they are, some more than others, others more than nothing and some just nothing. Its just become WornOutMoms second job of steering the boat continuously, there is no one at the school that has stepped up to lead the way utilizing his IEP.

 

Yes - I know what you mean about some doing more than others and some doing nothing... and some actually make matters worse at times. I know the problem for me is my son's inconsistency. I know it is difficult for teachers to understand that when he is doing really well and then all of a sudden is annoying, inattentive, and irritable, it is NOT because he is choosing to act that way. There is an underlying medical condition.

 

I do have a school psychologist and social worker who are very supportive. I have a meeting with them and the entire team next week to develop a "plan B" for when my son is sick and for the weeks after. I am planning to use the new fact OCD / PANDAS sheet that I heard about on this forum (the link is http://www.ocfoundation.org/uploadedFiles/...ct%20Sheet.pdf) at the meeting, so that I don't sound like an overprotective mother who is making excuses for her son. I liked it for my son because it talks about subsequent PANDAS symptoms being triggered by something other than strep, and it also mentioned attention problems and handwriting and math problems -all of which are seen with my son.

 

I will let you know how the meeting goes. Keep me posted on your son!

[kimballot]

I think what you recieve at an IEP mtg is different in each state. I live in Ohio. My son has an IEP for speech. I don't recall getting a 'Procedural Safeguards Notice" but we get a booklet entitled something like "Who's I.D.E.A." or something similar. It's their "bible" that they hand out at every mtg.

 

Legally - you should receive procedural safeguards with each IEP. It is pretty thick packet of info, or perhaps the procedural safeguards are in the IDEA bible. I would be interested in knowing if you do not receive them.

[thereishope]

Here is the fact sheet from our forum. it has more details..

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Also, here is an artcle some have used for school in hopes of getting them to understand...

 

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

[kimballot]

Thanks, Vickie! Is there a place that this is "stored" on the forum? I am relatively new and was searching for something like this... How would a new person find this?

[peglem]

Thanks, Vickie! Is there a place that this is "stored" on the forum? I am relatively new and was searching for something like this... How would a new person find this?

Its in the pinned thread at the top of the forum.

[thereishope]

The IDEA book I referred to probably is all the safeguards. It goes into a lot of legal things like how you could ulitimately take them to court, etc. I think I threw it out since I had gotten so many of them. It stands for The Individual's with Disabilities Education Act (IDEA). Perhaps I've gotten other things, but I haven't had problems with them so I haven't had a need to fight them.

 

 

As for the pinned threads peglem referred to, if you need anything else that isn't listed, let me know. I have a lot saved in my "favorites" for quick referencing.

 

One other article that is not in a pinned thread is one entitled "What every psychiatrist should know about PANDAS. It's not perfect, but it's pretty good. Here's a link to that thread.

 

http://www.latitudes.org/forums/index.php?showtopic=6506

[tired mom]

UGH!!!!!!!! Ds has been on a downturn since last Tues when he had a rage/terror attack in car following a LONG visit with the neurologist.. On Friday, his therapist asked me - "Is he coming down with something?". Yesterday he starts feeling sick - vague complaints of headache, stomach ache, feeling lightheaded, dizzy and weak. Fell asleep at 7pm Today - he calls home from school with similar complaints (minus the stomach). No fever, no cough, no stuffy nose, no sore throat. Again - he sleeps 2 1/2 hours. We call the psych and ask if these symptoms might be due to starting Luvox 2 weeks ago. He suggests we take him off it and see if he is better - maybe revisit it later. So then we endure 2 giant meltdowns...He is freaked out because he has a math test tomorrow, and was supposed to meet with his math teacher after school to review, but couldn't because of coming home sick. So he wants to try and study, but gets confused, and I can't help (yes - I can no longer do 8th grade algebra..) and he freaks and starts screaming and thrashing and banging his head and trying to break things. And then he screams - "This only happens to me when I get sick!! Give me something! Do something!" I swear now I feel sick to my own stomach. No matter how many times I have watched this happen to him, it still tortures me to stand by helpless. And I'm just sitting here waiting...waiting for the blood work results Dr T prescribed to come in, waiting for the PET scan on Friday, waiting for his Omnicef prescription to run out on Saturday, waiting to see if Dr T will respond to my email, and waiting for the next crisis. I seriously do not understand why he is sick as often as he is healthy!!!! It's like he needs to become the boy in the plastic bubble! I am so TIRED of this and what it is doing to him and our family and our life. I want a vacation from PANDAS,preferably with a beach and a tall margarita... I just want him well...

Hope your day got better. My daughter started on the biaxin and there is definite improvement. Hang in there, even though there is no beach you can still chill awhile and enjoy that margarita!!God knows we all need a break sometimes. Talk to you soon and good luck with pet scan.

Michelle

[Allison]

Hey WOM (Worn Out Mo)

Such a difficult situation for you! Especially when they beg for help and an end to the suffering. My DD16 has been going through a rapid downturn since the Prednisone wore off three weeks ago.

 

She has a 504 Plan with generous accommodations, however I think an IEP would give her more help to succeed in her classes. Im going tomorrow to ask for one at school, but they've been very reluctant to go down that road up till now. She's capable, when well, of As and Bs, but now she can't even get to class let alone do homework. It's like a serious learning disability.

 

We had a tutor from the district, for two whole hours per week, and only when the Dr certified she had to be home for at least 4 weeks. The first month she was too sick to even see the tutor, and by the time she did, the steroids kicked in and she went back to school. All her first Semester classes were "No Credits," so she couldn't even apply the little work she did do to the classes.

 

The new semester started off with a strong steroid burst, and she was like a normal kid again. Didn't last though, and basically she has been home sick for more than two weeks. Goodbye graduation. Hello Super Senior!

 

She at least wants to "walk" across the stage with her class and participate in the graduation festivities. I don't know if they will allow it, but I think they should. She's lost so much from this disease; I'd like her to at least have a ceremonial goodbye along with the kids she's been in school with since second grade. If she wasn't sick, shed be graduating and going off to college like all her friends.

 

Next year, if she's well enough, will be Running Start, on-line classes and other independent study options.

 

Sometimes I want to pull her out alltogether, because right now the last thing we need to be worrying about is her education. Time enough for History and English later. Right now it's all about health and wellness.

 

Guess I got off topic. I just feel the pain and needed to vent some as well.

 

But I would be interested in knowing more aboutIEPs and how to get one.

 

Thanks !

[nomoz]

I am so sorry you are going through this. And you certainly hit the nail on the head... it's the waiting that is almost unbearable. You see doctors, make plans, feel you are getting somewhere, and then, when it all starts spiraling out of control, whose hand do you hold? Maybe, in years to come, crisis intervention will becomes a more educated venue to explore, but, sadly, for now, you have to take matters into your own hands. It sounds like you are doing all you can. I hope and pray for all of you that your son's condition improves. My daughter (7) is also sick frequently, just getting over a bout with micoplasm, and is highly symptomatic around times of illness. Biaxin is (crossing fingers) working well at the moment - best I've seen her in months. And days before she started on it, she scratched holes in both my hands, bit me, kicked me, you name it. So there is, without a doubt, something to be said for antbx.

Hope there is an answer for you soon.

Good luck!

Noelle