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I am fuming after iep meeting, buster?


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(My husband says I'm the queen of writing the ultimate bitchy letter that no one even realized is bitchy!)

Your husband is right!! Wow, you're good! I hope your school district is cooperative. If not, they'd better budget for iron-clad underwear the year your DS arrives in kindergarten - they're gonna need it!

 

Already been there - done that, he's 3 1/2 and we got his IEP in place shortly after his 3rd birthday and he's attending EELP pre-K at the public school. The first meeting didn't go so well...the second one, well, let's just say we got everything we asked for! ;)

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I am so sorry you are dealing with this! Since I'm fairly new to the forum I don't know the details of your previous dealings with your school, but have you reached the point of formally requesting that your kids be referred for an IEP? Or is the school trying to say that they don't need to be evaluated? Our experience with getting my ds an IEP has probably been different from the typical experience because he goes to a private school, but it was the public school system that had to process our request to have him referred for an IEP and then they had to go through all the steps of evaluating him, etc. If you request that your kids be referred for an IEP, the school system has to respond to you. If they refuse to initiate an evaluation, you can take action with an advocate or attorney. If you aren't making enough progress by trying to work out accommodations with the school it might be better to initiate the formal process. Your state department of education should have some resources. My state has a coalition for the education of children with disabilities that provides assistance to parents with IEP's, 504's, etc. Your state might have something like that also. You can also have your kids privately evaluated and then give that information to the school system. They have the right to do their own evaluation, but in our case we had an extensive neuropsychological evaluation and an occupational therapy evaluation prior to requesting an IEP and both showed there were significant issues for my ds. The school system accepted these and then did some evaluating of their own. For us I think the private evals were key in helping the school system see the need for an IEP because they were so extensive, and the data could not be manipulated to the advantage of the school system. We did not have my ds's PANDAS dx at that time...that came late in the process of the school system evaluation, so they were working with symptoms and prior diagnoses (like dyspraxia and anxiety) and not a specific PANDAS dx. I agree with Buster that symptoms and how they are impacting access to the curriculum is important and that working with other diagnoses that go along with PANDAS like OCD or anxiety or TS or adhd might make things less of a hurdle.

 

That said, if you need something else for that nasty school nurse there is a good article on PANDAS in a publication called School Nurse News (see link below.) I gave it to my ds's school because I thought the source might carry some weight. It's bad enough that we are all dealing with such a nasty disease but to have to deal with doubt and ignorance and contention is exhausting. We are considering putting my ds in public school next year because the demands of private school are too much for him, and I fear we will come up against a lot more struggle and misunderstanding in that setting.

 

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

Edited by JJMom
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To be honest, it is best to provide them as little information as possible regarding the diagnosis. This should not be the focus of their attention. The team should be focused on the child's needs, no matter the diagnosis. You really only need one piece of documentation, and that is a letter from an M.D. stating that the child suffers from "XYZ" and the child will need the following written into an education plan. Forget about educating them on the specific diagnosis. It doesn't make the child's needs any more/less relevant.

Been there, done that. They don't need the details. If they require more information regarding the child's needs, school administrators should be directed to the physician for consultation. If a "Why can't he/she do that in class?" comes up, a more vague response will get you farther, such as, "Due to the attention difficulty, my child's health care provider is strongly suggesting that my child be required to do only xyz."

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Hope you're a step closer in getting this resolved Tami. You got me all fired up yesterday...still am. The nerve of some people who are supposed to be in positions to HELP children. It truly puts me at a loss. I'm wondering if it'd be possible to get a school nurse job deccription and look for "diagnostic functions" in there. I'm thinking "act as impediment to effective accomodations for sick children with official medical diagnoses" may be there...that line must be in a lot of school job descriptions. ;) Geez!

Edited by SarahJane
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Your school nurse was way out of line. I can only imagine how angry that would make you. Although I have been told some very wrong things by some dr.s, at least it is their job to diagnose. It is not her job to diagose or judge. This thread has made me realize how lucky I am that my son is in a school system that understands. I have to share with you an email his school nures sent to me last week after my son had a very difficult day...

 

Hi Jodie,

 

Please know that if you send him to school, regardless of his behavior, he is adored by all of us. He is a very special young man. He comes in daily to get crackers and I always love to see the smile on his face. Please don’t think that anyone would ever judge him if his behavior becomes difficult d/t PANDAS. We are all here to help him through this. We are also here for you. Please feel free to call and vent if you ever feel the need.

 

I have an 18 yr. old son and a 17 year old son. My 17yr. old was a very unhappy child and acted out quite frequently at school. I too dreaded picking up the phone when I would see the MPS phone#. At that time, every call, every behavior was so enormous to me, as this is my child and I wanted him to be sooo good. At that time he just wasn’t able to hold it together at times and he did the best he could.

 

NOW, looking back on all of this, it is so inconsequential. He is a wonderful young man, my angel in fact. (IF that isn’t a lot of pressure). Even in ninth grade at Hand he once jumped out of a cabinet to scare the teacher. What a rascal. I can’t stop smiling when I see that image in my mind, I know I shouldn’t, but life is too short.

 

So the message I am trying to convey is that what seems large and so significant today, will be so small and insignificant years from now.

 

He couldn’t be in a better school environment and more cared for then he is here.

 

Have a fabulous day and don’t worry. You can get through anything.

 

 

I consider my son's school nurse an angel on earth. She talked me right off the ledge that day. She went way beyond her job description but in a caring and compassionate way. I'm not sure your school nurse knows how offensive her email was. I've been in this PANDAS world long enough to know that there are people that "get it" and people that don't. I have wasted a lot of time trying to convince the doubters. I'm not sure anything you say or send to her will change her mind. Like the others said, she would have never done this with a child with diabetes or epilepsy. It is so very wrong and I am so sorry that you have to deal with this.

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To be honest, it is best to provide them as little information as possible regarding the diagnosis. This should not be the focus of their attention. The team should be focused on the child's needs, no matter the diagnosis. You really only need one piece of documentation, and that is a letter from an M.D. stating that the child suffers from "XYZ" and the child will need the following written into an education plan. Forget about educating them on the specific diagnosis. It doesn't make the child's needs any more/less relevant.

Been there, done that. They don't need the details. If they require more information regarding the child's needs, school administrators should be directed to the physician for consultation. If a "Why can't he/she do that in class?" comes up, a more vague response will get you farther, such as, "Due to the attention difficulty, my child's health care provider is strongly suggesting that my child be required to do only xyz."

 

 

I am really sorry you are going through this too, unbelievable!

I quoted the above post, because last week I met with our school for the first time re: a 504 for dd.

I had a letter from our MD, on his letterhead, requesting she get a 504, and listed areas that she may/will need help with- (I wrote the letter myself, w/help from a friend who did the structuring/wording, and input from our K teacher, gave it to our PANDAS Dr. and he signed it.) It briefly explained PANDAS (1 paragraph) and the end of the letter had a website for more information, but with that letter, no one said boo to me about whether this illness/neuro- disorder was real or not-

however, the school nurse, who was not at the meeting, called me 3 times the next day, trying to get her 'head' around it- 'who is this Dr.?' She asked. Me: 'an MD.'

It also helped that our principals husband had rheumatic fever as a child, and was bed ridden for a year, and still suffers reprecussions. But the school nurse, lol, I could tell she was thinking: WTH?

In the end, it went well, I'm grateful.

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I can't see the original email, but if I were replying to a letter about de Oliveira's paper, I'd probably say something like the following:

 

Thank you for sending me a copy of the most recent de Oliveira's paper. I wasn't sure if you had read her prior paper (
) in which she correctly states that about 40,000 children die each year of
untreated
streptococcal infection (with another 2 million needing heart surgery).

 

Thank goodness that despite her comment in that previous paper that the "the pathogenesis of RF remains elusive [and] how and why a small percentage of patients develop RF is still under investigation" that children can still receive treatment for a GABHS infection and prevent acute rheumatic fever. Based on the efficacy of antibiotics for RF, it would be immoral to withhold treatment pending the outcome of researchers trying to discern the pathogenesis of the disease.

 

This is at the heart of the debate about PANDAS. No one debates the clinical signs. To have PANDAS one must have a diagnosis of OCD or a tic disorder -- this is the first criteria. No one debates the apparent efficacy of the Perlmutter treatments. What is being debated (just like for Sydenham Chorea for the past 200 years) is whether the symptoms are caused by group A beta-hemolytic streptococcus. Luckily recent studies such as that by Kirvan are helping us understand both Sydenham Chorea and PANDAS (see
).

 

 

this might get her to read the actual cunningham paper :-)

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Thank you everyone for your empathy and compassion, Jay Jay, your nurse is an angel you are blessed. I'm not sure my nurse knew her impact either, she seemed nice up to this point, her English is horrible shes oriental but how dare her question doctors diagnosis. Thank you Buster , you are very wise. I'm still not sure what I should do. Maybe not respond to her email and just forward it to the assistant superintendent with a complaint. Alot to think about

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