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I am fuming after iep meeting, buster?


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I have been discussing my children's issues from beginning of the yearm trying to explain to them about Pandas and now lyme. I have given them links to numerous articles, doctors diagnosis letters and today I met with the principal, learning specialist and nurse. The nurse had the nerve to point out that I should go for another opinion and that Pandas is controversial, questioning how long they should be on antibiotic. and now she sends an email fyi with this link.

 

https://mail.google.com/mail/?ui=2&ik=c9da23211c&view=att&th=12f06cfd77c410ea&attid=0.1&disp=attd&zw

 

how do I respond with this, send them links to positive studies?

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I wouldn't send them any links. It is not the business of the school to determine whether a diagnosis from a medical doctor is valid or not. A school nurse is not in a position to make that determination. I would approach them from the direction of here is the diagnosis, here is what we need and I am not asking your layman's opinions of the medical diagnosis and recommendations I've received. I would put it in writing and send it.

 

I have to wonder if they question the parents of children w/ such diagnosis as diabetes or epilepsy or question the treatment for said disorders. I think we all know the answer to that and I'd let them know she was out of line. I would send a letter stating you felt the nurse was out of line to her supervisor in the district.

 

I could not get the link to work, btw.

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I wouldn't send them any links. It is not the business of the school to determine whether a diagnosis from a medical doctor is valid or not. A school nurse is not in a position to make that determination. I would approach them from the direction of here is the diagnosis, here is what we need and I am not asking your layman's opinions of the medical diagnosis and recommendations I've received. I would put it in writing and send it.

 

I have to wonder if they question the parents of children w/ such diagnosis as diabetes or epilepsy or question the treatment for said disorders. I think we all know the answer to that and I'd let them know she was out of line. I would send a letter stating you felt the nurse was out of line to her supervisor in the district.

 

I could not get the link to work, btw.

want to write me an email lol, i'm so tired of explaining to them. but i do want to respond back because what nerve she has to choose a negative article for an fyi, and how dare she tell me to go for a second opinion after i have had 3, and for the learning specialist to ask the nurse what she feels about a child being on long term antibiotics, wtf.

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I wouldn't send them any links. It is not the business of the school to determine whether a diagnosis from a medical doctor is valid or not. A school nurse is not in a position to make that determination. I would approach them from the direction of here is the diagnosis, here is what we need and I am not asking your layman's opinions of the medical diagnosis and recommendations I've received. I would put it in writing and send it.

 

I have to wonder if they question the parents of children w/ such diagnosis as diabetes or epilepsy or question the treatment for said disorders. I think we all know the answer to that and I'd let them know she was out of line. I would send a letter stating you felt the nurse was out of line to her supervisor in the district.

 

I could not get the link to work, btw.

want to write me an email lol, i'm so tired of explaining to them. but i do want to respond back because what nerve she has to choose a negative article for an fyi, and how dare she tell me to go for a second opinion after i have had 3, and for the learning specialist to ask the nurse what she feels about a child being on long term antibiotics, wtf.

 

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS): a Controversial Diagnosis

Sheila Knupp Feitosa de Oliveira & Christina Feitosa Pelajo

 

sorry, don't know why the link dosen't work.

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Take a deep breath, now take another. Ignorant people aren't worth the energy you expend on them. Go over her head, strait to the top with a brief note and a copy of her email. No doubt any administrator worth his/her salt will put her in her place. It doesn't hurt to mention that if the accomodations cant be made you may need to look at legal action.... that always gets their attention. Mean people suck. Hope your day ends with a laugh.

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Take a deep breath, now take another. Ignorant people aren't worth the energy you expend on them. Go over her head, strait to the top with a brief note and a copy of her email. No doubt any administrator worth his/her salt will put her in her place. It doesn't hurt to mention that if the accomodations cant be made you may need to look at legal action.... that always gets their attention. Mean people suck. Hope your day ends with a laugh.

At this point it's not so much that I need accomodations other than understanding and realizing their lateness is due to an illness. They are just in first grade, however, they may very well need accomodations as they get older. Just so aggravating. What is this nurse more knowledgeable than the doctors my children see??

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Niclemama is right - they wouldn't question someone with epiliepsy or diabetes - heck, they don't even question kids with ADHD anymore, and that's a very subjective dx too.

 

I would wait a day or so before you respond - I've found I'm much better at coming across strong when the emotions have had time to settle. (My husband says I'm the queen of writing the ultimate bitchy letter that no one even realized is bitchy!)

 

That being said, when you do write your response, the points nicklemama have said need to be clear - this is a medical dx that has been confirmed by several doctors, include your documentation again, include the credentials of the physicians who have dx (degrees, residencies, etc...). If it were me, I would also be poilte and thank the nurse for her insight, commend her for being inquisitive and doing some research of her own, compliment her for caring about your child enough to show concern about his medical treatment - most school nurses would not show that initiative, but as she is NOT a doctor, and not inimately familiar with your child and family's entire medical history (as those wonderful doctors you previously mentioned are), you must trust their judgement. Your job as a parent is to seek out adequate medical care for your child, their job is to provide an appropriate education in a safe setting.

 

Then remind her, and those you will be cc'ing on the letter (which should be everyone in that meeting, the school superindentant, whoever would be that nurse's direct supervisor, and if you're in a politically inclinded district, your board member), that your child's dx has been provided by board certified, qualified physicians, and regardless of the nurses opinions, they are entilted to the protections afforded them under state and federal law through the IEP/504. You have been kind enough to provide them with various resources to educate themselves a to your child's condition so they may be better equipt to deal with his individual challenges. You understand that there is controversy surrouding the actual dx, but there is also controversy over the diagnoses of autism and ADHD and many other medical conditions that are also afforded equal protection under the law. You appreciate all of their willingness to work with your son and family, however, you feel like your son's rights (under the law) are not being fully respected because of an ongoing debate in the medical community as to the approach and treatment of his condition, that quite frankly is irrelevant to how he should be accomodated in the school setting (really - what is it to the nurse if he takes abx or not?).

 

Tell them that you have already consulted a special ed advocate and attorney, however, you would like the opportunity to work through this without these resources. (Even if you haven't contacted anyone - but if I were you, I'd start looking!!!)

 

It sounds like you're pandering to the nurse - which you are stroking her ego a bit - all the while reminding her in a polite manner that she is NOT a doctor and shouldn't be dx'ing your child. She may get her feathers ruffled by this approach, knowiing that you're insulting her through gritted teeth, but everyone else who reads it will see that you are an even minded mother, doing what she can for her child and does not get combative when someone offers a differing opinion! :D

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want to write me an email lol,

 

LOL, I would but I'm having my own hard time getting the medical records from my pediatrician. Two weeks now and counting. I have an appt w/ Dr K on Tues and it would have been nice to have been able to send them ahead of time. As it is, I am informed I will not have my son's medical records until Tues, at the earliest, when I am already in Chicago. That will have been three weeks since I requested them. Its actually an unbelievable story of how uncooperative a pediatric practice can be.

 

Believe me, I feel your frustration and frankly, right now, I have a lot of anger :o .

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want to write me an email lol,

 

LOL, I would but I'm having my own hard time getting the medical records from my pediatrician. Two weeks now and counting. I have an appt w/ Dr K on Tues and it would have been nice to have been able to send them ahead of time. As it is, I am informed I will not have my son's medical records until Tues, at the earliest, when I am already in Chicago. That will have been three weeks since I requested them. Its actually an unbelievable story of how uncooperative a pediatric practice can be.

 

Believe me, I feel your frustration and frankly, right now, I have a lot of anger :o .

wow, so sorry...that just isn't right, what is it with these uncaring people!

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I don't want to sound pessimistic here, but your situation sounds so much like what we went through with our school last year - I think you should bring in an attorney or advocate. If I remember right, this was your 3rd meeting this year with them? You've been trying to get the accomodations all year and nothing has happened? It sounds to me like they are just using delay tactics. You've given them all the info they need and one more letter or email isn't going to change anything. You are up against prejudice - they don't believe that "behavioral" issues can have a medical cause. So now you need to make use of the law.

 

An attorney or advocate will either A) scare them into doing what you need or B) set things up for you so that you can get private school covered by the district or C) sue them to force them to give your kids what they need for a "free and appropriate education."

 

Just my humble opinion, but please PM me if you'd like to talk more about this. I'm really sorry they're putting you through this!

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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!

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I skimmed through the article she sent you, in fact I would just point out to the nurse the conclusions of the article - in the heading - it didn't say it was not a true disorder but actually warrents more research, just like rheumatic fever did in it's day, I bet she just read the first line mentioning "controversial" and then made her own presumptions! Use her own article to back YOU up!! Good luck!

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I've been thinking about how to respond to the post. I deeply understand the frustration you must be experiencing. Some comments however,

 

For the iep, are you pursuing eligibility under OHI or under SLD?

 

If OHI, then the required items is to have a condition and show it is negatively impacting access to the educational program.

 

Under current definition, someone identified as being on the pandas cohort would have either OCD or tic disorder. It is irrelevant (for purposes of the iep whether the team agrees on the cause of the symptoms - only the symptoms need be present). As such you may find it easier to get a dsm vi diagnosis of anxiety disorder or OCD or tics. Tourettes syndrome is typically classified under OHI even though the definition of ts exclude medical cause.

 

The real hurdle you have to pass is not what to call it, but showing it is impacting access to the educational curriculum and by reason thereof requires special education.

 

I know first hand how tempting to try to convince others of pandas, but that's unlikely to be your best route.

 

No one disputes that children diagnosed with pamdas have profound symptoms, the only dispute is whether GABHS is the culprit. Focus in the iep on the symptoms and not the cause and the least restrictive environment that will help you child access the cirruculum.

 

I know you'd rather dump the papers on the nurse, but just switch it around and say "you know the controversy is about the cause and not about the symptom right?"

 

Buster

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I was so bothered by this post. I can't believe that the nurse over stepped her bounds so much.

 

I totally agree with airial95. As a matter of fact, I think airial95 is absolutely brilliant. That letter writing approach is right on. Perfect. A++.

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I've been thinking about how to respond to the post. I deeply understand the frustration you must be experiencing. Some comments however,

 

For the iep, are you pursuing eligibility under OHI or under SLD?

 

If OHI, then the required items is to have a condition and show it is negatively impacting access to the educational program.

 

Under current definition, someone identified as being on the pandas cohort would have either OCD or tic disorder. It is irrelevant (for purposes of the iep whether the team agrees on the cause of the symptoms - only the symptoms need be present). As such you may find it easier to get a dsm vi diagnosis of anxiety disorder or OCD or tics. Tourettes syndrome is typically classified under OHI even though the definition of ts exclude medical cause.

 

The real hurdle you have to pass is not what to call it, but showing it is impacting access to the educational curriculum and by reason thereof requires special education.

 

I know first hand how tempting to try to convince others of pandas, but that's unlikely to be your best route.

 

No one disputes that children diagnosed with pamdas have profound symptoms, the only dispute is whether GABHS is the culprit. Focus in the iep on the symptoms and not the cause and the least restrictive environment that will help you child access the cirruculum.

 

I know you'd rather dump the papers on the nurse, but just switch it around and say "you know the controversy is about the cause and not about the symptom right?"

 

Buster

i am upset because my children have 2 diagnoses..they have pandas and a lyme diagnoses. my daughter was positive on igenex and my son clinical diagnoses. In any event, when I first approached the school it was to inform them because my sons ocd issues are noticeable. He touches everything, things in his mouth all the time and had a tic where he was always looking in back. I also notified the school because from a bad strep infection my son was banging his head..at home. In any event, as of now they are both doing well at school, but, I did want to set things in motion before the need really arised. For my son he needed speech which they finally gave in to giving me and they said he would be able to take tests(standardized) in a smaller environment, with extra breaks if needed. All this wasn't an issue. But, their lateness to school is not understood and basically seems like they don't contribute it to their illness. My daughter has some sort of short term memory issue and a problem expressing herself when she wants to relate a story that happened to me. The school dosen't see this because she is reserved. I know there is some issue there and don't know how to go about getting her the help. The nurse well that just really infuriates me and the learning specialist asking the nurse about the illness is insane. What could she possibly know. I just don't know how to respond to the email, I can't just ignore it.

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