Getting IEP

[StillHopeful]

Hi --

 

My son currently has a 504 plan. He is in 7th grade. He has PANDAS (officially diag Nov 2012). Still working on getting the right medication so he is still symptomatic. His "official" diagnosis at school is Tourette Syndrome (which he hates stigma). Major issue is school phobia/anxiety. He has not attended school since Oct 2012. It was a new building (7th/8th grades) and he did not transition well.

 

The school finally provided a special ed teacher (who happens to be a dr) and he is finally learning at home. We have only had 4 sessions so far. The other teachers they sent caused him too much anxiety and he refused to work with them. He also has major sensory issues (Sensory Int Dysfunction), Tics (verbal cursing and noises, plus motor) OCD (the cursing may be an OCD and contamination), may have math and read skills issues due to PANDAS (hard to tell). Normally bright and enthusiastic. Not anymore. Refuses to go back to "that place". Says he will go to high school when he is in 9th (diff building).

 

The school district's head of student services suggested I get an IEP for my son so "he can take advantage of all benefits available to him under the law". Great! What does that mean?

 

Questions:

1) Should I change diagnosis to PANDAS or am I over complicating things? I will make sure it stays OHI in any case (not emotionally dist).

2) My understanding is that an IEP is supposed to be goal oriented. What type of items will be on there? Can you give me an example? They aren't going to be able to manage his tics or ocd or sensory issues?

3) Will "labeling" him be an issue moving forward?

4) Anything I should know..

 

BTW, the school's psychologist wants my son to come in for testing at the school. Duh... he has a phobia. He won't go. How important is it that he take this test? Supervisor of Student Services said she would just mark him "untestable" if that were the case. Were any of your children "untestable"?

 

Thank you so much!

[MomWithOCDSon]

1) Should I change diagnosis to PANDAS or am I over complicating things? I will make sure it stays OHI in any case (not emotionally dist).

 

Due to stigma concerns, I know many people would advocate that you do, indeed, change the diagnosis to PANDAS. In our experience, however, my son, like yours, had a pre-existing diagnosis before the PANDAS diagnosis; in our case, it was OCD. In the end, I opted for what gave my son the best response to his needs in the environment, and as nearly all of his behaviors were OCD-based and OCD was much more of a "known quantity" to the staff than was PANDAS, I left the OCD dx in place, but informed the school as to the subsequent PANDAS diagnosis, as well, and added some items to the IEP in light of that dx (such as the school informing me when a case of strep was identified in my son's class).

 

2) My understanding is that an IEP is supposed to be goal oriented. What type of items will be on there? Can you give me an example? They aren't going to be able to manage his tics or ocd or sensory issues?

 

Yes, the IEP includes goals by which improvement or continuing need are "measured." In our experience, though, they tend to be fairly subjective and can and will likely be tweaked over time as your child matures. No, the goals aren't about the medical/physical issues likes tics or sensory issues; they're about your son learning to manage his response to those things. For instance, one of my DS's stated goals was to "learn to identify triggers" for his anxiety/OCD. Another one was to "learn to advocate for his needs" with his teachers and other staff. Basically, the goals are not the same goals you would have with a medical doctor in terms of treatment, or even with a therapist for basic life skills. They're goals particular to the academic environment, to help your kid learn to better conduct himself and feel more comfortable and successful while in school.

 

3) Will "labeling" him be an issue moving forward?

 

Not in our experience, but that doesn't mean your son might not still feel some level of stigma for "being different." In terms of the IEP itself labeling him and setting him up for any kind of trouble or prejudice going forward, we've actually found the opposite to be the case. His IEP "protects" him because it is subject to all the closely-held privacy laws and protocols, and it compels those teachers (high school, especially) who, without it, might tend to "label" DS inappropriately -- "willful kid whose parents make excuses for him," "trouble-maker," "lazy" -- and stop at that, without even attempting to work with him to be successful in that class. Thankfully, those teachers and negative experiences have been few and far between, but we have had one teacher each year in high school thus far who've only worked with DS under the duress of the IEP.

 

4) Anything I should know..

 

I would Google IEP and tap into some of the numerous web sites that outline your legal rights so that you're armed with some of that basic information. I would also suggest bringing someone for yourself into the IEP meeting . . . someone you trust who cares for you and your son, and who can help you keep a level head in the event you find yourself getting agitated or annoyed by either the tone or choice of words that someone on the school side of the equation may utter during the meeting. Our experience was generally positive, and the people involved, for the most part, appeared to DS's best interest at heart. However, there's frequently that one person in the room who thinks he/she already knows everything, has your kid "pegged," and is more about keeping control for themselves than they are about reaching concensus for your kid.

 

BTW, the school's psychologist wants my son to come in for testing at the school. Duh... he has a phobia. He won't go. How important is it that he take this test? Supervisor of Student Services said she would just mark him "untestable" if that were the case. Were any of your children "untestable"?

 

Because the IEP is a legal process and entails governmental funding to the school, they are compelled to meet certain criteria in finding a kid qualified for an IEP. Testing is part of that. So unless you've had some of the standard testing done by someone else recently, your best chances for qualifying for the IEP probably involve him being tested somewhere, by someone. You can engage a professional firm for that testing, also, but they are pretty expensive ($1,500 to $3,000), so finding a way for it to be done at/by the school is a more cost-effective option.

 

In our case, DS was not able to attend school when the testing was done, but he knew the school psychologist and was willing to give the testing with her a try. So we made an appointment, and I brought him straight to her office and sat outside while he tested. She gave him frequent breaks so that he could pace off some nervous energy when he needed to, and she overall "abbreviated" the testing, doing just enough to have the information she needed for the IEP application and meet the criteria. Maybe something along these lines is an option for you?

 

Good luck!

[T_Mom]

Hi -- Good advice from Nancy above--

I would only add that qualifying as "Other health impaired" can be done with a wide variety of issues, and the medical issues he is facing certainly should be enough.

 

An IEP will provide MUCH more than 504 plan, and would enable you to request services more directly for him. However, as I write that, I remember our own experience and I know that even with an IEP, our kids would not have been able to function when affected by PANDAS severely.

 

Have you had success with treating him via a PANDAS doctor? (I believe you were going to see Dr T, correct?)

 

Have you tried a month long antibiotic (full-on strength) and did it "clear him" of any symptoms?

 

Seems to me that since you have been dealing with this for so long, and since there may be an issue of mycop. -- an antibiotic for a month treatment is worth considering.

 

Your concerns are understandable, as far as wanting him to succeed academically, and I do think an IEP may be helpful.

 

However, if it is PANS, and the underlying medical issues are correctly treated, improvements should include overall functioning with time (again, with PANS treatment.) (Have you thought of seeing Dr L for a consult too? Her area is neurology.)

Hope things improve--

Edited January 4, 2013 by T.Mom

[StillHopeful]

The school psychologist just called and they are changing the location to the district office building in the hopes that he is OK to go there. We will see. I have to say that this dr scares me and I don't trust him. I think he doesn't know what he is doing and I am pretty sure if I bring up PANDAS (& I will) he won't agree or listen to me. He is very dismissive. He also told me if he doesn't get tested then I can't get services (which I don't think is entirely true) and I should do everything in my power to get him there.

 

I think I may bring a psychologist/student advocate that I know. He specializes in Tourette Syndrome. He went to school w/ this school psychologist. I don't want to appear as being "armed" with a doctor. Most people in the room I think will be willing to help and this school dist does have the reputation of giving appropriate services. I just don't know what the possibilities are and what to ask for. I know he needs help with the anxiety and I think OT for the sensory particularly as it relates to school (the smells, the crowd, the noise ...) would be helpful.

 

In regards to treatment, we are seeing Dr. T. DS is on Biaxin for Mycop and Augmentin for Strep. The Biaxin did nothing for 3 weeks and so the Augmentin was added 2 wks ago. I saw some improvement days 5-10 and then he went back to where he was. We are using 2 500 mg pills for the Aug and yesterday he said to give them together and not space them apart (& not at the same time as the Biaxin) and see what happens. uggg. We have been at this a long time and very little improvement.

 

Also, just had his brother tested (TS/OCD/ADHD)and his strep titer was high (nothing else) so Dr. T is putting him on an antibiotic too. Hopefully it will help both of them.

 

Question - With a PANDAS or PANS diagnosis how do you explain tourettes? Would I say it is Tourettes caused by PANDAS? Do they still have TS?

 

Thank you both for your advice.

[smartyjones]

still -- i tried to send you a PM but was't able. . . i don't want to scare you, but if you are not trusting this pscyh, i think you should pay attention to that feeling.

 

we had a horrible situation last year -- a school psych who was so inept, it was harmful. if you want, i can share details. i believe they screwed up with ds and then went into serious CYA mode. in the end, we got private testing. ds was on home teaching for the rest of the year -- not ideal but was basically the least worst choice.

 

this year, luckily, he got a spot in a charter school that did appropriate testing right from the start.

 

i can imagine our school this year using some of the same terms -- "eligible for spec ed services" -- but with totally different meaning than what last years would have meant.

 

does your school district offer mediated IEPs? that would not be anyone 'on your side' but would be an impartial person to attend the meeting.

 

i don't think you should worry about appearing to be armed with the doc. it should be seen as someone to help you wade through issues, jargon etc that you are not an expert in. it's TOTALLY commonplace to have an advocate or doc with you at a meeting and if it's not seen as such, that would raise some red flags for me.

 

 

good luck.

[StillHopeful]

Hi Smartyjones-

 

Not sure why you couldn't PM me. I am going to PM you and then maybe you can PM me back?

[StillHopeful]

OK, couldn't pm you either.

 

What did the doc do wrong? The testing itself or the interpretation? Recommendations? If you don't wnat to reveal too much that is fine.

[MomWithOCDSon]

Question - With a PANDAS or PANS diagnosis how do you explain tourettes? Would I say it is Tourettes caused by PANDAS? Do they still have TS?

 

Thank you both for your advice.

 

I would probably tell them that the behavioral manifestation of the PANDAS is Tourettes-like.

[stacyH]

Question - With a PANDAS or PANS diagnosis how do you explain tourettes? Would I say it is Tourettes caused by PANDAS? Do they still have TS?

 

Thank you both for your advice.

 

I would probably tell them that the behavioral manifestation of the PANDAS is Tourettes-like.

Hi,

Reading your post I felt like I was looking in the mirror. My son is in 7th grade as well and diagnosed in November 2012. He hasn't attended school since Oct. 2012 and we have had exactly 4 homebound school sessions as well. I just wanted to let you know that you can wait until after the testing to determine a diagnosis for an IEP. My son has had these issues since 2nd grade and we had never heard of PANDAS before last Nov. We used emotional disorder (generalized anxiety disorder)as well as a differential between and high IQ and avereage processing speed from testing as the basis for an IEP. He was not attending school regularly when tested but was able to do the testing one on one. The IEP hasn't really done that much except you get taken more seriously and it gives him a break if he needs less work or to leave class etc.

 

I would absolutely remove the tourettes label. It does no good and he very well may have no tics after successful PANDAS treatment.

 

Good luck. It's so hard to believe that another parent has the same issues as I do. I feel like I have PTSD and it isn't over yet.

StacyH

[StillHopeful]

Hi StacyH -

 

Yes, it looks like we do have a lot in common. My son also had symptoms for a long time and was misdiagnosed. Thank you for letting me know about waiting until after the testing is completed to come up with a diagnosis for the IEP. I will do that. I completely understand how you feel re the PTSD. Good luck to you too!

[T_Mom]

It is my understanding, that the OHI (other health impaired) label is dependent on the MEDICAL DIAGNOSIS which has been given.

I would ask if the pediatrician, ie., Dr T (?!) can write the documentation for the need for the IEP -- since it is a HEALTH issue (like MS, or cancer.)

 

The testing by the school will be in an effort to "prove" that the "disability" -- in your case the HEALTH impairment IS affecting his academic achievement.

 

This may be VERY difficult to assess, as if they give an IQ test, and/or academic achievement tests (reading, writing, math achievement tests) -- and he is in a PANDAS episode, his academic ability will not be assessable. It is basically shot due to the PANDAS inflammation, and will not be an adequate predictor of what he is normally capable of doing.

 

Do you have a record of his previous capabilities which you can use as documentation of his "true" academic ability?

Standardized test scores, school-wide tests, and such from years previous should be able to be used to substantiate his "true" ability.

[StillHopeful]

Thanks Tmom - I responded the other day to you but it didn't go through.

 

There is a def disconnect between my son's capabilities and what he is doing now. Not sure if it is a cognitive thing, anxiety or what. It is due to PANDAS. He does terribly on the ELA English state exam but was in an honors english class last year. I will bring a file of his test scores w/ me and pull them out if needed. On the other hand he did very well on the math but I don't think he can do math now. We will see.

 

I will aske for a letter from Dr T. We currently have a letter that says he has TS, Sensory Int Dysfunction, anxiety and ocd. So as far as a diagnosis goes, they all fall under OHI so I suppose we will discuss this at the meeting to see which would be more beneficial in the long run.

 

Thanks again!