Jump to content
ACN Latitudes Forums
Malke

Do IEPs and 504 plans even work for PANDAS?

Recommended Posts

Hi Everyone,

 

Just got back from dd's preschool/kindergarten (she's in K) and a talk with the marvelous director. While really trying to be helpful and completely well meaning I don't think she grasps the seriousness of the situation. The purpose of our talk was to find out how they could support us and to encourage us to get an eval from the school district for an IEP or 504 (medical) plan for when dd heads to 1st grade next year.

 

She kept talking about how the woman in our district who does the evaluations is really great and that they'd be able to put a really supportive plan into place for when, for example, dd has a day with low frustration tolerance (outbursts, agressive, name calling, seperation issues). I just kept saying, it's not like a regular behavior issue, it's not psychological or even developmentally based. I just kept saying: "a medical issue that looks behavioral" and "anger, defiance and emotional issues with a medical cause." She kept asking me what the doctors say about managing this condition...I told her that basically no doctor really understands it beyond, maybe, what treatment to try next and even that is still up in the air. I explained the BBB and the auto-antibodies that attack the brain. I said, this is not an excuse but it's a reason.

 

She finally got the picture when I told her that PANDAS kids often end up with IVIG and when I explained the procedure to her her eyes widened and she sort of slumped in her chair. I think that sometimes graphic is better. I also said, if a kid has a broken leg you don't say "come on! get in the race, you can do it!" Nope, you know not to push them to do something they are unable to do. I said, if a kid had a different autoimmune disorder that attacked their blood instead of the brain, then you might be able to set up a regular schedule for school, but as it is right now, I can't predict from day to day whether dd should go to school or not. I don't care if it's easier for the teachers to plan. If she's unable to go to school, I'm not even going to try. Also, a big one for me, if a kid's brain is ADHD/ODD foggy b/c of PANDAS you can't use regular behavior techniques to help them "learn to cope" and be more successful in the classroom. MEDICAL CONDITION. From my experience, when dd is in the middle of an episode, even if it is relatively mild, I can't reason with her. Sometimes I can distract, but if they are having to do it all morning long with her then it's not even worth sending her to school.

 

Soooo...sorry for the rant, but I am wondering what your experiences have been with IEPs or 504's. Since, as I was discussing with the school director, the medical profession (at least in my limited experience) can't really tell you what to expect or how to explain it to others, especially school, what kind of advice can you offer me?

 

Gratefully,

 

Malke

Share this post


Link to post
Share on other sites

I sympathize with your frustration! We have a 504 for DS in 9th grade. He gets extra time on tests, freedom to leave the classroom to use the bathroom or just get tics/frustration out, and no penalty for bad handwriting. This is based on a TS diagnosis. That being said, when OCD and anxiety appeared at the beginning of the year we got a pretty generalized "huh?" from the teachers. From their point of view, he was a mediocre student who was otherwise quite pleasant and they thought we were helicopter parents who were nuts. They still have no idea, and I have no reasonable way to let them know what is goint on. No help, I understand, but my sympathy to you!

Share this post


Link to post
Share on other sites

if a kid's brain is ADHD/ODD foggy b/c of PANDAS you can't use regular behavior techniques to help them "learn to cope" and be more successful in the classroom. MEDICAL CONDITION. From my experience, when dd is in the middle of an episode, even if it is relatively mild, I can't reason with her.

 

This hasn't been my experience. We have great success with CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention) and some ADHD techniques. There is a medical cause, and symptoms can remit with medical interventions. But many parents on the board have been able to dial back the severity/intensity of behaviors using behavioral tools.

 

We used to have terrible issues with rages. Using visualization techniques, relaxation steps, and making my son the owner/boss of his feelings, we were able to reduce the severity dramatically. By earning tallies in school for paying attention, and letting him "buy" rewards with those points, we lessened his ADHD tendencies (and also had a quantifiable way of measuring bad weeks vs. good weeks that the teacher could see too). I don't think you can make it go away with just tools - you need medical too. But I do think tools help bring these back into a manageable level much quicker.

 

I agree that you can't reason with someone in the middle of a melt-down. But you can lay a foundation before and after so that each episode gets more manageable.

 

We fought hard for a 504. They are not always easy to get. Our 504 allows additional time for homework, allows DS to leave the room when he needs a mental break (would get sent to the office to deliver a "note" which was nothing more than a folded blank piece of paper), have a water bottle on his desk, and is able to take timed state-wide tests in an untimed environment. It also allows us to check in with the school more often and not get brushed off by teachers or principals. Not everyone you come across will want to bend over to help your child. A 504 gives you rights that you may one day really appreciate.

Share this post


Link to post
Share on other sites

We initially had a 504 Plan beginning in 3rd grade based on an OCD diagnosis. That plan was really just the bare minimum: more time for tests/quizzes, as need bathroom breaks, extra time for homework assignments as needed.

 

When DS hit the major exacerbation that ultimately led us to PANDAS (he was in 7th grade by this time), the school actually requested that we transition from the 504 Plan to an IEP; the IEP provides for more on-site services and personnel available to our DS, and it also protects him from being held back strictly over excessive absences, etc. Now, in addition to general ed classroom accomodations, he gets two weekly social work sessions and an on-site caseworker who helps him advocate for himself and negotiate tough days and/or tough teachers. It's been a real blessing for him and us. His accommodations have been expanded, too, to allow for typing/keyboarding assignments rather than handwriting them, not being marked tardy when it takes him longer to go from one class to another, being able to enter the school early every morning so that he can get organized and prepared to start the day without feeling overwhelmed by all the noise and activity entailed with being at his locker when all the other kids are swarming through the halls, and my personal favorite: "adjusting assignments for length, not content." The school psychologist came up with that one, and it is BRILLIANT! So now, when he's in exacerbation or visibly struggling, his math teacher, for example, will have him do about half the number of homework problems as the other kids; he still gets assigned at least one problem of each "type" and must demonstrate that he knows the concepts, but he's not forced to spend all night drilling through repetitive problems that take him longer than the average kid not due to intellect, but to OCD.

 

In short, our 504/IEP experience thus far has been very positive; I don't know where we'd be without them. Now the school is aware that it's not merely OCD, but also PANDAS that's at work, so the accommodations have been expanded that we be notified of suspected cases of strep in the class, etc. But the accommodations DO help and are applicable; they're just more applicable at some times than they are at others.

 

I have to agree with LLM, too, about the "management" of behaviors in and out of extreme exacerbation through CBT techniques, etc. Because our DS had had an OCD diagnosis long before we came around to PANDAS, we've been steeped in the world of CBT for many, many years. As Laura said, a kid in the middle of a rage isn't going to readily access the tools and techniques that CBT offer, and certainly, we've seen also that in times of extreme exacerbation, it can take the patience of Job to coach our DS through a rough spot. But the CBT tools have been invaluable to us as parents and to him as a kid really trying to be as "normal" as possible because they prepare him for when he's not feeling quite so overwhelmed but still needs some help.

 

I say go for it. If it can't hurt, and it might help, it's worth giving a try. Plus I know that 504's, because they entail no additional funding to the school and involve considerably less bureacracy or paperwork than do IEP's, can be "removed from the file" or terminated pretty much at parental will. So, if you don't see any benefits to it after giving it a fair shake, you can call a halt to it.

Edited by MomWithOCDSon

Share this post


Link to post
Share on other sites

Tampicc--An IEP is just what the acronym stands for: an Individualized Education Plan, with goals and objectives for what the child will learn (developed in response to their identified needs related to their disability) For PANDAS/PITAND the disability category can be 'Other Health Impaired', O.H.I. An IEP is developed for the child and specifies what that child needs--the setting must provide for those needs. The child's needs are considered first.

 

A 504 Plan is one which attempts to level the existing playing field for the child. Similar to the ADA (American with Disabilities Act in the public sector) a 504 Plan is developed when a child needs accommodations in order to be able to access the existing academic environment; ie., extended time for tests, HW adjustments, etc.

 

In our case, the school has not been able to provide grades for the last quarter, and now for the current quarter as our d is unable to demonstrate learning. She was given all 'NAs' on the last report card, rather then failing her across the board. We are in a private school, however in a public school--I would have asked for an IEP due to illness. This would have provided for accommodations, including grade adjustments as necessary due to health issues.

 

Yes, 504 and IEP plans are to be made available in all states through public school funds. Any parent, at any time, can request free assessment of their child through the public school system for learning issues or concerns. With PANDAS though, you would be going in with a medical issue for which you are requesting accommodations. These might include, HW charts, extra time, behavioral supports, etc. Hope that helps.

Edited by T.Mom

Share this post


Link to post
Share on other sites

We were required to provide a documented diagnosis in order to get a 504. So if you are going to pursue, you will do your blood pressure a favor by having something from your doctor prior to the first meeting. There's a sample letter on pandasresourcenetwork.org or you can draft your own and ask your doctor to print it on his/her letterhead. Doctors are hard pressed to find time to draft a letter from scratch but may be very willing to work with a draft you provide as a starting point.

Share this post


Link to post
Share on other sites

Thanks to everyone who has replied so far. Very, very helpful to get the long view.

 

However, my daughter is five. We haven't really made it to the world of homework and testing (and I'm hoping we will be able to find a private or charter school that is naturally more accommodating) but I just don't know what to write into an IEP or 504 for a future 1st grader with these issues:

 

1. Emotional lability and low frustration threshold with social situations -- if she's unable to make a clothing choice before school without falling apart, then my choice would to just keep her home, she doesn't have enough resources to make it through school that day.

 

2. When anxiety peaks (examples from this fall: a field trip, a visit from a fireman, a slide show about some kind of animal that scared her.)

 

3. Biggest issue -- seperation anxiety. Things were really just fine when we started school in September, but starting in about November (which, when I look back, is when I first see the PANDAS starting) things really got hard. I take her to her clss room in the mornings and it takes me 20 minutes to leave, and usually part of that time is me trying to leave and having her run after me. Her teacher has to make sure dd is highly engaged in something or I can't get out the door. This is on top of a good-bye routine we've been doing for years.

 

I think I will let the school director know that we are willing to have a meeting to start the process, but I would so appreciate any other thoughts about an IEP and 504 for a younger child. Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... :(

 

Thanks again for the feedback,

 

Malke

Share this post


Link to post
Share on other sites

We were required to provide a documented diagnosis in order to get a 504. So if you are going to pursue, you will do your blood pressure a favor by having something from your doctor prior to the first meeting. There's a sample letter on pandasresourcenetwork.org or you can draft your own and ask your doctor to print it on his/her letterhead. Doctors are hard pressed to find time to draft a letter from scratch but may be very willing to work with a draft you provide as a starting point.

 

Great tip, thanks. :)

Share this post


Link to post
Share on other sites

We were required to provide a documented diagnosis in order to get a 504. So if you are going to pursue, you will do your blood pressure a favor by having something from your doctor prior to the first meeting. There's a sample letter on pandasresourcenetwork.org or you can draft your own and ask your doctor to print it on his/her letterhead. Doctors are hard pressed to find time to draft a letter from scratch but may be very willing to work with a draft you provide as a starting point.

 

Hi -- I looked all over that site and couldn't find the letter. Could it be on a different PANDAS site? Thanks!

Share this post


Link to post
Share on other sites

Does an IEP put the child in special education, and remove them from the regular classroom environment, and the 504 gives accomodations in the regular setting?

 

Officially, an IEP does put the child in the category of Special Education; however, it does not, by definition, remove them from the regular classroom environment. By law, your child is entitled to the highest level of education available and appropriate for him/her, so if he can function within the regular classroom, then that's where he stays. Sometimes there will be a special ed resource aid in the regular classroom to help the kids who need extra support, but they still get to stay in the regular education classroom.

 

My DS14, for example, has an IEP. He is in the regular, general education classrooms and the gifted education classrooms for all of his classes; the only exception is that he has a "resource period" built into his day (while other kids are taking an elective), so that he can touch base with either his caseworker or one of his other teachers if he needs to make up some time on an assignment, wants some additional help on something, etc. During exacerbation, that resource period has been a great "cool-down" period during the day, too, where he can just chill, organize his materials so he doesn't feel quite as at-sea, etc.

 

The 504 is also in the standard environment, and it also provides for accommodations in the classroom. What it doesn't do, by definition, is give your child a case-worker who's job it is to help them advocate, nor does it give them a resource period or any social work assistance on a regular basis. In our experience, a 504 seems adequate for elementary school grades because, usually, your child is in one classroom most of the time, with the exception, maybe of fine arts or phys ed, so that one teacher just needs to be on the same page in terms of accommodations, techniques, etc. But once you get up into junior high and/or high school, where the kid is changing classes every 40 to 50 minutes and may have a team of as many as 7 or 8 teachers, assuming he still needs some significant assistance and accommodations during exacerbations, the IEP has made things a lot easier for us. The case-worker serves as our primary point of contact so, say, when he's moving into a period of exacerbation and we need to call upon an increase in his accommodations, all I have to do is get in touch with her, and it's her job to circle the team, fill them in, help DS advocate for his needs, etc. It really simplifies the process and gives you a "go-to" person.

Edited by MomWithOCDSon

Share this post


Link to post
Share on other sites

We asked for - and were denied - a 504 when Ds was in 1st grade. We got one at the end of 2nd grade (nightmare story). So we worked under the radar with his teachers in the interim. We developed a hand signal that meant "I've tuned out - can the teacher or TA come tell me what's going on", we had the teacher's agreement that he could use the bathroom as often as necessary, even if he just went 2 minutes ago.

 

For anxiety - I was to be called if he ever asked for me - without needing to go to the nurse (who was my worst enemy thru the whole thing), he could arrive early at class to adapt to a quiet environment and then be settled before the other kids came in, I waited in the school lobby with him for about 15 min every morning, letting him acclimate. In a 504, you could ask that it be ok to arrive late (to allow you to work thru clothing issues), (I believe that you'd need an IEP if you needed a high number of excused absences). We also asked to be notified in advance for any fire drills so DS could be prepared - the teacher went so far as to tell him 15 min ahead of time, otherwise he'd spend all day waiting and worrying. He was also allowed access to ear plugs kept in his backpack and was put in the front of the line (with an asperger's classmate) so he had an adult near him and was first out of the building. You could similarly ask to be notified of special visitors.

 

The important thing was being validated with a formal plan. We no longer had to waste time repeating ourselves and trying to convince every new teacher that we weren't crazy.

 

I know your heart must break over the separation anxiety. But I'm not sure you'd be doing the most good by home schooling - if that's your primary reason for doing so. Whenever you accommodate OCD or anxiety, you make it bigger. You validate the fear and send the message to your child that their fear is reasonable. You reinforce it. I know it is gut wrenching and I never ever agreed with the kindergarten teachers' attempts to restrain my child as they told me to leave. Instead, even if it took a long time, I'd stay with my child (had to do this with both kids) and give them the pep talk of the century - but in the hall, not in the classroom. I'd tell them that I loved them and had made sure they'd be absolutely safe. But that I didn't want to OCD monster to be the boss and if I listened to the monster, then I wouldn't be protecting my child from him. The monster wanted all of DS's attention and wanted him to stay out of class, focused on the monster instead of on the kids and teacher who were having fun without the monster. And I loved my child so much that I was going to help him defy the monster and go have fun. (You can find lots of this kind of discussion in the OCD books we've mentioned in other posts.) The important thing was that they ultimately needed to make the choice to say no to the anxiety and cross the threshold by their own choice. Then we'd celebrate the victory when they got home.

 

It's tempting to say that at 5, they don't have the coping skills to do such a hard thing. And I do realize that severe OCD can make this impossible in some days. I don't mean to make it sound easy. But I've been amazed at how proud my kids are when they're able to face their fears. So whenever you can push them to do this, it's awesome. The other thing we've had a lot of success with came from the recent Oprah show with that boy who used visualization and colors to help him calm his rages. My kids have intuitively grasped this concept much faster than they grasped ERP ideas. When I asked them if their feelings had colors, they were like - yeah - duh. So we talk now about how the OCD monster likes dark, sad colors and wants to steal all the sunshine colors. When the kids start to get angry or sad or (insert negative feeling here) - we say - "don't let those feelings steal your sunshine" and somehow, they seem to understand how they need to fight back and protect those positive feelings. I never expected it to work - figured it was over their heads. Turns out they get the concept better than I do.

 

I digress. Other ideas for a 504 might come from your daughter. Make a list of things that worry her at school - and discuss ideas with her about how to mitigate those fears. You might be surprised how some simple things may mean the world to her (such as Benji's bear).

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic
×