PANDAS and school

[staeprice]

Hello, I am new here. My dd is 7 and was recently dx with PANDAS/OCD. Her current treatment plan is counseling, prozac, lamictal, and pencillin (daily for one year is the plan w/probiotics). She missed a lot of school this past year after two significant episodes in November and May that caused her to miss a month or more of school each time. She has a 504 plan from before the PANDAS dx for what we thought were sensory and anxiety issues. Now our psychiatrist and new counselor have brought up an IEP and schooling options for Fall. Right now she is supposed to attend regular second grade and the school will have a meeting to determine her need for home and hospital. My dd's OCD issues are almost always clothing related so she can't go to school if she is not dressed (naked or in a bathing suit). However, her school-anxiety keeps increasing because she knows she is different from the other kids and they are starting to talk (not to much teasing yet..). For instance, she might wear the same outfit every day for two months. I guess what I would like to know is if others have had to do home-bound services during PANDAS episodes and how this has impacted their schooling and friendships upon return to school. Does anyone have IEP services for "emotional disability" and what kinds of services are you finding beneficial? The older my daughter gets and the more PANDAS episodes we have had (4 in the last two years) the harder it is for her and the more internalized her problems get. If any one is experiencing the same I would love to get your feedback and ideas. Thanks, Becky

[thereishope]

Welcome. I hope you don't mind me derailing this question for a moment, but in reference to your treatment plan...does your child get penicillin only once a day and how long has she been on it? Have you tried a different antibiotic? Also, in regards to the prozac....one does need to be careful with a PANDAS child and psych meds. Some go on them and are fine and they do have improvement, but for others it actually makes the condition worse or adds new problems like no inhibitions. PANDAS kids have a higher activation rate and psychiatrists need to monitor the situation very closely.

 

It sounds like your school is rather understanding of the disorder and willing to work with you? Amongst the things you request from the school, I would tell the to inform you when strep is in the classroom. PANDAS kids can go into an exacerbation from exposure only and you need prevent reinfection as much as you can. For the days when the anxiety is at its worst, you can try giving her Ibuprofen. A good number of PANDAS kids will find some relief from it.

[tpotter]

Our school district has fought us horrendously. We finally settled after going to 4 Due Process hearings, and having the whole thing drag on for 3 years (which only added to his anxiety.) We are in the process of finally getting an IEP for him. May I make a big suggestion. I would NOT primarily classify her as ED, because the problems are different, and they change (some may be much better after treatment, or not even there.) We are having our son classified as OHI (primary) and ED (secondary.) The reason is that OHI (Other Health Impaired) requires a medical diagnosis, which your daughter has. For that one, focus on how you can keep her from getting sick at school, since she has a compromised immune system (Purell everywhere, and she has to wash her hands often, small classes to avoid too many people to expose her, etc.) Since the ED is caused by PANDAS (which is caused by an infection), this is why ED is secondary. For the ED, they have to help her stay calm, decrease her anxiety, provide support, and make certain she is not bullied in the end (my son was terribly bullied.) The reason you want OHI first is because if you don't have a supportive school environment (and things can change from one year to the next,) they can try to "dump" your child into an ED/ES class, and say they've covered the problem. We have fought our school district for 2 of the years over this (we ended up having to put him in a private school in the meantime, and sue them for reimbursement...ended up settling.)

 

Hopefully your school district is more suppportive than ours has been.

[MomWithOCDSon]

Hi Becky, and welcome!

 

Yes, we have an IEP; it began as a 504 Plan in 3rd grade, but when he had a major exacerbation about a year ago now, (heading into 7th grade), it was recommended that we transition to an IEP for additional services (school case worker, weekly social worker session, etc.). Ours is for "other health impairment" or OHI, though, as opposed to "emotional disability."

 

Our 504 and IEP were born of our DS13's OCD behaviors, so the accommodations focus upon helping him navigate school with the sometimes severe OCD he displays. His anxiety had wratcheted up so high last September that we did pull him out of school for over a month and home-schooled him. His IEP provided for one hour per day of school tutoring, but the rest of the schooling was left up to his dad and me. Basically, we stayed in touch with his teachers via email, picked up assignments from the school weekly or via email, and kept him up-to-date as best we could.

 

Kids asked him where he was when he was out, and, unlike grade school, junior high school can be brutal with the teasing, the exclusion, etc. DS definitely suffers some of that. But the flip side is that he's managed to find a couple of good friends who accept him as he is; one of them is a "normal," pretty popular kid who travels in different social circles at school but is almost always happy to hang out with DS at home, back in the neighborhood, and play video games. The other is another boy with some school challenges (technically, I understand he has an ADHD dx) who is more sensitive to DS's feelings and really reaches out when DS is struggling with something. So, in the end, I guess what I'm saying is that I think it's inevitable our kids are going to face some social obstacles and teasing; some kids can be very cruel. But if my DS can find a couple of kids who are compassionate and accepting, I've got to believe any kid can. We just have to spend some extra time and energy at home encouraging them and supporting them, letting them know definitively that being "different" doesn't equal being "bad," and that being a friend to someone who needs one might net you a new friend yourself in the end.

 

The other "plus" with the IEP in our case is that his school case worker became a really great mentor and support for DS; he could always count on help when he wasn't able to advocate for himself with other teachers, and the case worker even helped DS figure some things out socially. He made DS feel validated in terms of feelings and perceptions and ideas, and that was worth its weight in gold!

 

Since your DD is younger, I can share a few things that helped our DS in grade school in terms of navigating the social and academic world in which he was frequently uncomfortable. Because of all that's going on, is your DD shy? Maybe even a little withdrawn, like at recess? Our DS was very shy and would generally just stroll around by himself at recess because he was too introverted to ask other kids if he could join in their activities, and there were some kids who wouldn't have welcomed him anyway because of his "differences" and I'm guessing he sensed that. So we came up with an "activity box" for him for recess period . . . basically a tackle box that had a bunch of little gadgets and tools in it. A little jar for putting a captured bug in. A tape measure. A rain gauge. A scale. A compass. Basically some little scientific exploration tools he could use either alone or with another kid(s). What tended to happen is that once he opened it up on the playground and started messing around with something, other kids would take an interest, and soon he would have a little circle of fellow "science geeks-to-be" using the gadgets for the whole period. It was a good conversation starter, and a good way of helping DS reach out to his classmates on his own terms.

 

There're lots of other little tricks and tweaks we found for accommodations that helped him through the years and, like I said, though I'm sure there have been tough moments at school, he's managed to find a place where he fits and both kids and adults who back him up when he needs it. If you'd like any other info, fire away with questions, either here or via PM; always glad to share what we've picked up along the way.

 

In the end, I think our kids become such awesome human beings, with such compassion and insight and resilience as a result of what they're being forced to deal with at such early ages. Sometimes, despite all our efforts to protect them and heal them, they still wind up having to fend for themselves for a moment here and there, and all we can do is love 'em!

[mandyknowles]

Hello, I am new here. My dd is 7 and was recently dx with PANDAS/OCD. Her current treatment plan is counseling, prozac, lamictal, and pencillin (daily for one year is the plan w/probiotics). She missed a lot of school this past year after two significant episodes in November and May that caused her to miss a month or more of school each time. She has a 504 plan from before the PANDAS dx for what we thought were sensory and anxiety issues. Now our psychiatrist and new counselor have brought up an IEP and schooling options for Fall. Right now she is supposed to attend regular second grade and the school will have a meeting to determine her need for home and hospital. My dd's OCD issues are almost always clothing related so she can't go to school if she is not dressed (naked or in a bathing suit). However, her school-anxiety keeps increasing because she knows she is different from the other kids and they are starting to talk (not to much teasing yet..). For instance, she might wear the same outfit every day for two months. I guess what I would like to know is if others have had to do home-bound services during PANDAS episodes and how this has impacted their schooling and friendships upon return to school. Does anyone have IEP services for "emotional disability" and what kinds of services are you finding beneficial? The older my daughter gets and the more PANDAS episodes we have had (4 in the last two years) the harder it is for her and the more internalized her problems get. If any one is experiencing the same I would love to get your feedback and ideas. Thanks, Becky

 

 

My daughter missed her entire 5th grade year of school because she had such horrible neuro issues. Our school was wonderful and set her up on a homebound internet program...might be something to look at if your child still has problems. my daughter is ready to go back to school but i will have to go with her because she has chest spasms to where she stops breathing and i just cant let her go back without me, still doing this. i hope this helps

[danddd]

Vicki, "no inhibitions" Brilliant !!!!!!!!!!!!!!!! my dd's behavioral therapist just said she was starting to become "disinhibited", there has been a definite shift in things lately. she is on seroquel...............

this forum is amazing.....

thanks for posting that,

 

danddd

[bubbasmom]

My son was partially homebound all of this past school year. It completely effected his friendships. He said "don't you know? I'm just the weird kid that never comes to school". I felt bad for him. However, what else are you going to do? At least he passed!

[T_Mom]

Becky--I am really sorry you are going through this--there are alot of understanding parents on this forum who can say they certainly understand. As far as classification can you get her identified under "OHI" Other Health Impaired? This umbrella term is a formal special ed. diagnosis and certainly easier to shed then ED and certainly much more accurate for PANDAS behaviors.

 

Since this is an "exacerbation" issue, and not your typical chronic ED I think you could definitely argue the identification should be under OHI. Home health support may be much easier to ask for as well if her behaviors are seen as illness related vs. ED.

 

I applaud that fact that you have been able to get a "diagnosis" for PANDAS and treatment.

There are a number of us on the forum who found full strength antibiotics for months to work, in our case our d also had two steroid bursts which did wonders to bring her back to herself -- it moved recovery much closer to us in a short amount of time--have you considered that I wonder?

 

If you click on a person's name and then go to their "profile site" on the forum you can read all their posts (tells their stories of symptoms and treatments) Click on the options box on the far left column (hope that makes sense--it is not obvious.) and from there click on the link to read the posts, you get them all.

This was a huge help to us when our d was first diagnosed. All the best, TMom

Edited July 13, 2010 by T.Mom

[mkur]

My son received services under "OHI" Other Health Impaired for ADHD. It was explained to me this way. All you need is one label for the child to be put into special education so go for the least stigmatizing which I think is ADHD (approx 10% of pop is ADHD or ADD). A lot of children receive services because of speech. A couple of years ago the law changed and tourette's syndrome is now under OHI. Stay away from ED because it is difficult to remove. I was also told nothing goes on the child's permanent record until high school except for ED. Once the child has a SP.ED. label they qualify for services and are under the umbrella.

 

Now the school district may limit which services are available by the label. But extended time and small classroom testing are available for ADHD. A lot depends on your child's advisor - some are better advocates for your child then others. There are a lot of non-profits available to help you. Our school district has a list available for parents. The tourette's syndrome association TSA was very helpful for me - they have a lot of info posted on their website. TS kids have all kinds of issues so TSA knows a lot. Do your homework - list the problems and think of a solution. My child was spitting and I did not know what to do. You can request a tissue box and treat it like a runny nose. My kid was getting up and leaving the room to go the bathroom - major problem.

 

When you are having an ARD to develop an IEP plan - stay calm. Bring a friend or relative for support. If the meeting is going the wrong way and you don't have enough information or support, end the meeting and sign DISAGREE on the sign in/out sheet. Go home and regroup.

 

I am just a parent who had to learn everything the hard way and this is how it was explained to me. Good luck.

[monarchcat]

Hello, I am new here. My dd is 7 and was recently dx with PANDAS/OCD. Her current treatment plan is counseling, prozac, lamictal, and pencillin (daily for one year is the plan w/probiotics). \

 

I can't really address the school issues, but as for the treatment plan, it sounds like the treatment plan recommended to me by a dr. at Boston Children's Hosp by a "PANDAS specialist". I said "no thank you" and brought my children to Dr. B. in CT who put them on a much more aggressive PANDAS-focused plan (rather than attempting to mask the symptoms w/ psych meds). Dr. B was very unimpressed with the idea of once a day penicillin as a prophylactic. Some may have had luck with pen vk, but i believe maybe at a much higher dose (and even then... not really the drug of choice since many strains of strep are resistant).

 

Have you considered a consult with one of the "big gun" PANDAS docs? Has your dd been on full strength abx at all yet? You may find that if you treat the PANDAS aggressively she may improve to the point where the school issues are much less.

 

Good luck!!

[EAMom]

Hi Becky,

 

I just had to chime in here and agree with Vickie and Monarchcat...please consider a more aggressive treatment plan. Our kids deserve to be 100% (or as close as we can get to that), and it doesn't sound like your doc's current approach is going to get you there. Your daughter deserves to have her life back.

 

Did you mean the pen. is given once daily? Sue Swedo gave a talk last year (I think it was the DAN! talk). She explained that penicillin. MUST be given twice daily and if a dose if missed, your child is essentially unprotected for days. Here's an article on pen/amoxcillin failure in strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html . On this forum, many PANDAS parents find the best sucess with "bigger gun" antibiotics esp. Augmentin XR and Azithromycin. My own dd (now 60 pounds, was 43 when she started at this dose) has been on Azithromycin 250mg/day for over 2 years. For many on this forum, long tem full-strength antibiotics have made a world of difference. If the antibiotics don't achieve remission for your child, then then next step to consider would be a course of steroids, IVIG, and/or plasmapheresis.

 

I should also add that most PANDAS kids need to stay on antibiotics for more than 1 year. Swedo admitted we don't really know how long these kids need to be on antibiotics. She compared it to rheumatic fever, where they keep upping the recommendation from 18, to 21, to 25... For, us, I know I want to keep my dd (she's now 10) on some type of prophylaxis until at least age 18. (After age 18, I suppose the decision isn't entirely up to her parents!)

 

BTW, my dd also a low dose (10mg/day) of prozac (Lexapro, her first SSRI, did cause the disinhibition Vickie mentions, in addition to increased aggression and akathesia) so I should be the LAST person to criticize SSRI use in PANDAS kids. BUt, I do completely agree that psych. drugs need to be used with EXTREME caution and can often do more harm than good...these drugs can be a real double edged sword. My dd also gets daily Advil, and has had IVIG 2x.

Edited July 14, 2010 by EAMom