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Malke

Do IEPs and 504 plans even work for PANDAS?

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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.

 

We've had some of that over the years, too; in our case, it tended to go hand-in-hand with the separation anxiety. There would be days where we'd walk away from our DS with him bawling, and us bawling, too, but we'd turn our backs to him so he couldn't see us. But we were worried that if we gave in and kept him home over the sensory or separation anxiety issues, he'd just become increasingly phobic about not wanting to go. So the nice thing about the 504, for instance, was that it let the teacher know, year after year, that this was a kid for whom certain "kindnesses" would be necessary; personally, I think it really helped us out in terms of teacher selection from year to year because our DS always got assigned the most flexible, positive, warm-hearted teacher.

 

In terms of the clothing choices, any chance you could get her to pick out her outfit the night before, as part of her bedtime routine? Then she wouldn't have to get worked up over it the next 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.)

 

This is a perfect example of how a 504 would help you. You could ask for an accommodation that notifies you well in advance of any of these special events: field trips, visiting presenters, etc. You could even ask (if they don't already provide) for a cirriculum guide that would tell you when they might be having Archie the Arachnid Wrangler in the classroom with his creepy-crawlers. And then you could go over those events with your DD and plan accordingly; you could arrange to be one of the chaperones, or you could take her to the field trip destination separately with just yourself, and meet the class there, or you could stop by the classroom that day so that she would have you for support the day Archie was coming, or, maybe as a last resort, you could go ahead and keep her home that day.

 

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.

 

We had a very similar problem with our DS in preschool, kindergarten and elementary school, off and on. The younger the kid, generally speaking, the more accommodating the teachers and, lots of times, they will just step up to the plate and help you out by getting the kid really absorbed in something right off the bat so that you can untangle yourself and get out the door. But as the kids get older and the general expectation is that a 5 or 6 year old can let go of Mommy's hand without having a circus sideshow provided to distract her, you don't get that automatic help anymore sometimes. So, once again, the 504 to the rescue. There could be an accommodation, for instance, that you could bring your DD maybe 5 minutes earlier than the doors open to the "general population" so that she could have her teacher all to herself for those 5 minutes to settle in and feel "special" and in control. Or you could, maybe, work in an accommodation that there is to be an age-appropriate task reserved especially for her upon her arrival to integrate her into the day, like feeding the class goldfish or setting out the art materials. Our DS became the class hedgehog's keeper, for instance, and woke the thing and gave it fresh water every morning, like clockwork, and that seemed to help him let go of us and warm up to being at school. Again, early on some teachers are probably more than willing to help your DD with things like this with no formal accommodations whatsoever. But having them spelled out can help in the event you need them to stretch into another school year on occasion, or in the event of a substitute, etc.

 

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.... :(

 

Good luck to you!

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Thanks, tampicc - I needed that today! Not what I ever dreamed I'd be "good" at, and wish I never had to learn about this stuff, but I appreciate the thought. There are other parents here who are much better at it than I am - Nancy being one of them.

 

When I first started learning about CBT and ERP, it seemed so overwhelming. But I had a great teacher (Meg's mom and others) and it's really just about empowerment. When your child is learning a sport or a musical instrument, there are a few ingredients to success - first, the desire has to come from within. It can't be dictated by an adult. Second, they have to be willing to practice, practice, practice. Third, they have to be supported - with training, with coaches, with pep talks, with tools and lessons to gain skills, with peer support to learn from others who understand, feeling they're part of a team and not flapping alone in the wind, and with celebrations for each small accomplishment. So we're really just asking our kids to do what seems so normal if it were soccer or piano. It's just that most soccer moms don't have to learn how to coach "wearing underwear 101" or "the world series of touching door knobs". :lol:

Edited by LLM

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Thank you everyone SO MUCH for your thoughts and time spent spelling out the issues. I'm sort of overwhelmed at this moment in time. Once the late-January crisis abated with the help of abx and ibuprophen, I think I sort of let down. I was not prepared to have a conversation (without much warning) with the school director yesterday -- when she asked how can we help you, what kinds of things do you do at home that we can do at school too -- I just couldn't even talk clearly. This is not really like me, lol! My lack of a coherent response also made me realize what I still need to learn, so now I feel I'm on a better track.

 

It'll take me a while to process all the good information I've received on this thread. But, I think I'm ready to rally again and make sure that we do a good job forming a plan. We're only four weeks into this thing and still have a long way to go to find out about co-infections and/or lyme. We still don't really know for sure what we're looking at it other than it's PANDAS-like. I'll be happy to have more information, for sure.

 

Anyhow, thanks again. I *really* appreciate it.

 

Malke

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Malke, I think you are doing an AMAZING job with your dd.

I've gotten to know you well, and have *known* you for some years now, and what you have accomplished, your intelligence, your hard work-- what a fantastic Mother.

Whatever you decide about the schooling situation (and by the way, if you did home-school for a bit, you would excel in that, too, with your patience and creative nature) it will all be okay----

xxoo Sarah

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It took some time but I did push and we got a 504 for my dd who is in 3rd grade.. up until this point she was a straight A student.. teacher pet...perfect kid... sort of student.. no problems at all.. except that she was missing alot of school... that was because I kept her home when she was having melt downs and the school didn't see it..

After finding out what we were dealing with PANDAS.. I went for the 504..

they didn't feel she needed a IEP.. but agreeded with me that she needed the 504..

 

I took the approch of laying it all out there for them and then asking them to help me protect her brain and also help me to not let this affect her school wise, grade wise..

 

I ended up needing two notes from her doctor.. the 1st one said "This letter is to certify that she is under treatment for the PANDAS Syndrome and may need some accommodation do to the psychiatric repercussions of the syndrome"

The 2nd note I ended up getting from the doctor said "Please excuse from school during periods of significant strep outbreak"

 

we set her 504 up covering two things.. 1) prevention and 2)when symptoms come..

 

on the prevention part.. she gets to have a water bottle with her so she doesn't have to drink out of the fountin, I asked for hand sanatizer at her desk and her to be able to use disinfecting wipes.. They agreed to all that.. PLUS went a step above.. her whole class when they come into the class room at the start of the day or after they had been outside or to gym, music.. whatever.. the teacher as they walk in the room puts a bit of hand sanatizer on each kid as they enter.. Then since the school would NOT agree to cleaning her class room daily(they do it about once a week if we are lucky)they let me provide the disinfecting wipes.. and at the end of the day.. the kids in her class wipes down all the desk and hard surfaces.

 

Also in the line of prevention.. A note went home with every student at the school that read.

"Parents and Guardians of........... school

A child in our school has been diagnosed with P.A.N.D.A.S. (Peiatric Autoimmune Disorder Associated with Streptoccocci) When a child with P.A.N.D.A.S. contracts or comes into contact with Strep, their body produces antibodies to the bacteria that attack their brain and cause inflammation.. The swelling in their brain can have dramatic short and long term consequences for the child.

 

It is very important that we limit Strep exposure as much a spossible in school. If your child is sick we ask that you please keep them home. If your child is diagnosed with Strep infection please contract the school so that we may inform the child's parents immediately.

Thank you..

and the princible signed it"

 

Also along the prervention lines..

When someone calls in with strep.. the school contacts me to let me know they don't tell me who just tell me there is strep in the school.. and which grade it was in.. I can make up my mind what I want to do from there.. but what I have found is that normally.. my dd has been having symptoms or about two days before I hear from the school that someone has called in with strep. so I don't know how helpful this really is.. but it is nice to know still.

 

IF there are 2 or more cases of strep in my daughters class room... I can pull her out for how ever long I feel is needed and she can do her work from home..

 

If there are 5 or more known cases of strep in the school I can do the same..(though that hasn't happened) I'm sure there has been.. but I don't think parents call it into the school even though we asked them too.

 

Now for symptoms days..

DD is one who seems to respond well to Motrin if the symptoms are mild.. moodiness, crying, getting short with those around her.. sort of things a dose of Motrin normally will put an end to all of that.. So if her teacher sees she is having mild symptoms and they seem to be distracting dd from her school work.. the teacher will call me and I'll come give her motrin.. IF DD can feel the obsessive thoughts an can tell everything is bugging her and she is able to say to her teacher that she is not feeling right.. the teacher will call me and I'll either come get her or I'll give her some motrin..

If her symptoms are bad before school and I can tell she isnt' going to get anything out of being there that day.. I can keep her home when she is having symptoms and it doesn't count agaist her..

 

she is given extra time to do her work or her make up work if she is having symptoms..

 

I did not go for being able to leave the room for memtal breakes or anything like that.. what I have watched with my dd is if she is having symptoms she can try to fight though them if they are mild.. but even on mild symptom days.. her work suffers.. up until PANDAS she never got anything lower then an A on anything.. She reads two grade levels above her grade and she is good at school, loves school loves her friends.. When symptoms are there.. she can read the words but that is all they are words, she doesn't understand any of it and they have no meaning to her.. on symptom days she has brought home anywhere from C to F's.. when I saw that happening.. I talked with her teacher who told me if I see those on symptoms days if it's home work it's no big deal but if it's test and stuff let her know and she can make it up on a non symptom day..

This got me and the school thinking... if things are not clicking in her brain well at all on symptom days how much is she really getting out of what is being taught.. so on mild symptom days I'll do motrin and send her to school.. but if she is bad I don't bother.. and it doesnt' count agaist her at all.

 

I really didn't want her grades to drop due to this... but even with what we are doing... they have dropped.. She bought her her 1st B's this year on report cards...

 

But at least with the 504 in place.. I feel she is able to be protected school wise if she ends up in a major flare, and we are doing what we all can for mild symptoms and trying to limit the strep she come in contact with.

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

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Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... :(

 

I know that feeling well.. and I really really looked into it and wanted to do it.. not so much for just taking hte pressure off but because it would mean she comes in contact with less illnesses which means she would have less symptoms.. ~sigh~

 

Only when my dd isn't having a symptom day... School is her favorite thing.. she loves everything about it.. the work her friends... she loves learning and loves showing off her good grades and loves playing and working with her friends so much... that the doctors all think at this point it would do more harm then good metally to take her away from school because of PANDAS..

 

though on symptom days I have had her sitting in my living room crying her eyes out, throwing her school books across the room begging me never to send her back there ever again and asking if she oculd be home schooled.. ~sigh~

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Thank you Nancy.. this has been very helpful for me as well.. my DD has the rest of this year and next year befor she moves up to the next school where they team teach with about 4 or 5 teacher for two years and then into the Jr High and High school..

I guess I didn't think past the elementary stage to look at how this might not work as well when she gets older..

Oh how I pray PANDAS is under control and may never come back by then.. but I will keep the IEP in mind for her as well as her 504 we already have..

Thank you

 

 

 

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.

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It took some time but I did push and we got a 504 for my dd who is in 3rd grade.. up until this point she was a straight A student.. teacher pet...perfect kid... sort of student.. no problems at all.. except that she was missing alot of school... that was because I kept her home when she was having melt downs and the school didn't see it..

After finding out what we were dealing with PANDAS.. I went for the 504..

they didn't feel she needed a IEP.. but agreeded with me that she needed the 504..

 

I took the approch of laying it all out there for them and then asking them to help me protect her brain and also help me to not let this affect her school wise, grade wise..

 

I ended up needing two notes from her doctor.. the 1st one said "This letter is to certify that she is under treatment for the PANDAS Syndrome and may need some accommodation do to the psychiatric repercussions of the syndrome"

The 2nd note I ended up getting from the doctor said "Please excuse from school during periods of significant strep outbreak"

 

we set her 504 up covering two things.. 1) prevention and 2)when symptoms come..

 

on the prevention part.. she gets to have a water bottle with her so she doesn't have to drink out of the fountin, I asked for hand sanatizer at her desk and her to be able to use disinfecting wipes.. They agreed to all that.. PLUS went a step above.. her whole class when they come into the class room at the start of the day or after they had been outside or to gym, music.. whatever.. the teacher as they walk in the room puts a bit of hand sanatizer on each kid as they enter.. Then since the school would NOT agree to cleaning her class room daily(they do it about once a week if we are lucky)they let me provide the disinfecting wipes.. and at the end of the day.. the kids in her class wipes down all the desk and hard surfaces.

 

Also in the line of prevention.. A note went home with every student at the school that read.

"Parents and Guardians of........... school

A child in our school has been diagnosed with P.A.N.D.A.S. (Peiatric Autoimmune Disorder Associated with Streptoccocci) When a child with P.A.N.D.A.S. contracts or comes into contact with Strep, their body produces antibodies to the bacteria that attack their brain and cause inflammation.. The swelling in their brain can have dramatic short and long term consequences for the child.

 

It is very important that we limit Strep exposure as much a spossible in school. If your child is sick we ask that you please keep them home. If your child is diagnosed with Strep infection please contract the school so that we may inform the child's parents immediately.

Thank you..

and the princible signed it"

 

Also along the prervention lines..

When someone calls in with strep.. the school contacts me to let me know they don't tell me who just tell me there is strep in the school.. and which grade it was in.. I can make up my mind what I want to do from there.. but what I have found is that normally.. my dd has been having symptoms or about two days before I hear from the school that someone has called in with strep. so I don't know how helpful this really is.. but it is nice to know still.

 

IF there are 2 or more cases of strep in my daughters class room... I can pull her out for how ever long I feel is needed and she can do her work from home..

 

If there are 5 or more known cases of strep in the school I can do the same..(though that hasn't happened) I'm sure there has been.. but I don't think parents call it into the school even though we asked them too.

 

Now for symptoms days..

DD is one who seems to respond well to Motrin if the symptoms are mild.. moodiness, crying, getting short with those around her.. sort of things a dose of Motrin normally will put an end to all of that.. So if her teacher sees she is having mild symptoms and they seem to be distracting dd from her school work.. the teacher will call me and I'll come give her motrin.. IF DD can feel the obsessive thoughts an can tell everything is bugging her and she is able to say to her teacher that she is not feeling right.. the teacher will call me and I'll either come get her or I'll give her some motrin..

If her symptoms are bad before school and I can tell she isnt' going to get anything out of being there that day.. I can keep her home when she is having symptoms and it doesn't count agaist her..

 

she is given extra time to do her work or her make up work if she is having symptoms..

 

I did not go for being able to leave the room for memtal breakes or anything like that.. what I have watched with my dd is if she is having symptoms she can try to fight though them if they are mild.. but even on mild symptom days.. her work suffers.. up until PANDAS she never got anything lower then an A on anything.. She reads two grade levels above her grade and she is good at school, loves school loves her friends.. When symptoms are there.. she can read the words but that is all they are words, she doesn't understand any of it and they have no meaning to her.. on symptom days she has brought home anywhere from C to F's.. when I saw that happening.. I talked with her teacher who told me if I see those on symptoms days if it's home work it's no big deal but if it's test and stuff let her know and she can make it up on a non symptom day..

This got me and the school thinking... if things are not clicking in her brain well at all on symptom days how much is she really getting out of what is being taught.. so on mild symptom days I'll do motrin and send her to school.. but if she is bad I don't bother.. and it doesnt' count agaist her at all.

 

I really didn't want her grades to drop due to this... but even with what we are doing... they have dropped.. She bought her her 1st B's this year on report cards...

 

But at least with the 504 in place.. I feel she is able to be protected school wise if she ends up in a major flare, and we are doing what we all can for mild symptoms and trying to limit the strep she come in contact with.

 

This is all brilliant, thanks so much for sharing!! I'll be happy to have my daughter's K teacher read this. Even though she is well meaning and caring, she still insists on telling dd that she is 'healthy inside and out' which is absolutely not the case.

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Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... :(

 

I know that feeling well.. and I really really looked into it and wanted to do it.. not so much for just taking hte pressure off but because it would mean she comes in contact with less illnesses which means she would have less symptoms.. ~sigh~

 

Only when my dd isn't having a symptom day... School is her favorite thing.. she loves everything about it.. the work her friends... she loves learning and loves showing off her good grades and loves playing and working with her friends so much... that the doctors all think at this point it would do more harm then good metally to take her away from school because of PANDAS..

 

though on symptom days I have had her sitting in my living room crying her eyes out, throwing her school books across the room begging me never to send her back there ever again and asking if she oculd be home schooled.. ~sigh~

 

This is really helpful too. The difference with my dd is that I actually think she is happier at home right now (age 5 3/4). Because of sensory issues from birth, she's never really been fully happy or engaged in preschool or Kindergarten. She loves her friends, but social situations really stress her out. I was with her for the first half hour of her morning K class today (as a way to try to mitigate the separation stress) and all she did was yell at the other kids really loudly. Her teacher, who had seen her on Saturday at ballet class said "She was really doing great on Saturday, happy, etc" and I said, yep, the kid in this classroom this morning is not my child. I walked out of there thinking that if it is so stressful for her, why not homeschool for a little while? On her good days we'll be able to do lots of things and she'll be flexible enough that I can get some of my work done as well (I'm self-employed). On the bad days there will be no pressure to go anywhere. I walked out of school this morning thinking, if its such an issue, and I have some flexibility in my life, why not just try it? The only thing is, I think we should finish out the school year and then transition to our new routine during the summer...

 

Thanks again for sharing. I really appreciate it. :)

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Malke,

 

We have an IEP for our son - and he's only 3.

 

We had the medical issues cleared up fairly easily, we got letters from our pediatrician, behavior therapists and Dr. Murphy all explaining our son's issues and potential suggestions for the IEP. We also gave the team a few copies of Saving Sammy to help them understand.

 

The ultimate goal for an IEP is to keep them in the least restrictive setting possible - preferrably a regular classroom. They tried to keep him in his current day care setting and send an ESE teacher twice a week to work with him and help the teacher implent tools in the classroom. The entire IEP team with the exception of ONE person (who had never seen or evaluated my son) insisted this wouldn't work, most of his anxiety was school based and putting him into a more inclusive setting would be better - but this ONE person insisted that since it wasn't affecting him "academically" (he was developmentally testing almost gifted - mid exacerbation) she didn't see this as an issue. But that's a whole 'nother rant... :angry:

 

That arrangement lasted all of 3 weeks. We went back in and our one naysayer didn't even show up at the next meeting.

 

The bigger challenge for us, and likely will be for you - is what kind of gaols to set and accomodations to make. As you said, the testing, assignments, handwriting, etc...doesn't really come into play as much in 1st grade. Instead, we focused on the behavioral. We're using his time in the ESE pre-K program to help him adjust to school and how to handle outbursts there. He is the only one in the classroom without a developmental/learning issue but we've found that the classroom structure that is best for those kids has worked wonders for our son. The structure, visual scheduling, queues and prompts etc... has helped tremendously. His teacher, knowing his OCD issues, has handled the few outburts amazingly - even preventing the rages and metldowns seen when his OCD ramps up. He went from having MAJOR behavior issues at school to being almost a model child in his current setting.

 

Our goals were difficult to determine, and we ultimately decided on small goals that helped us with the overall goal of having him be able to identify the increase in anxiety and implement an intervention before it escalates to full blown rage. Some options we're using now is a special "sensory corner" of the classroom with a beanbag chair for him to snuggle into with his blankie and some sensory toys - it's been working. As he gets older, it may be going to the nurse, restroom, or some other things mentioned here.

 

For the seperation anxiety/school refusal - they have been FANTASTIC! They created a new "ritual" that makes him feel secure that doesn't include me. (Some might say that they're feeding his OCD to combat the speration anxiety - but we look at it as one battle at a time) He has an aide that meets him at the drop off line, and takes him right from the car. If he is having anxiety, she takes him to his special sensory corner in the classroom (at this time of day, the classroom is empty) and she's come up with their own little "ritual" that soothes him (a certain song - low lights, rubbing his back). He can stay there as long as he needs, and can join the class when he's ready. In the beginning, he would be there for hours, but it took about 2 weeks, but he's only had to use that technique maybe 2-3 times since. Now he jumps right out of the car to his aide with litle more than a "bye mom!!" and heads off to breakfast in the cafeteria where he meets his class. He hasn't missed a day of school since he's started there - and actually gets more upset when his big boy school is closed for a day.

 

 

So the standard tools used for kids with ADHD, etc... really ARE working for our classic PANDAS child. It'be been amazing.

 

Medically, we have the same things in play as others here- a letter went out to the whole school notifying them of an immune compromised child and strep needs to be notified ASAP. They have a standing order for Motrin as needed (which they haven't had to use once, even with an active strep infection last week!) and we're fortunate that the school nurse there had a child with PANDAS at her previous school last year, so she's familiar. We didn't have to get into much of the cleaning/hand sanitizing stuff yet since it's a pre-K room, they bleach down everything daily and have the kids wash their hands a ton.

 

He's in a special ed classroom now, but everyone agrees that if we meet our goals over the next 2 years, there's no reason why he won't be in a regular classroom by Kindergarten. We'll know what accomodations may need to be carried over from the ESE room, and those can be accomodated for him in a regular setting.

 

I think the challenge we'll have moving forward is with each new teacher, if he's doing well to start the school year and then has a flare up, recognizing it as the {ANDAS his IEP is in place to address, not him acting out and causing disruptions. But I think that regardless how well your IEP is written, those type of teachers likely exisit everywhere - so we'll cross that bridge when we come to it.

 

I've rambled on long enough. If you want to chat further, or have questions about the process for a younger child, feel free to PM me and we can talk in more detail.

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So the standard tools used for kids with ADHD, etc... really ARE working for our classic PANDAS child. It'be been amazing.

 

This is so helpful!! Thank you for taking the time to spell out everything you've done and are currently doing. My daughter is in K now, but we (finally! by ourselves, with no help from the preschool) identified sensory issues when she was at the start of pre-K in the last school year. She could have really, really used all the things you described. It's no wonder I have PTSD around the separation issues...I didn't have any support either and things just got worse and worse. I'm so glad you had those kinds of supports in place for your son at such an early age.

 

I did have the thought this morning, before I read your post, that many of her issues right now are ones that are unresolved from years of undiagnosed sensory issues and really horrible seperation anxiety due to the SPD. I believe, at this point, that the only reason they have surfaced again in the last few months are:

 

a. Because she was snowballing into a major PANDAS episode (totally understandable)

 

...and then, as the abx and ibuprophen and Enhansa have been clearing the PANDAS symptoms,

 

b. As a learned behavior from recent PANDAS and all those years when we had NO supports in place.

 

Your reply today, and this entire thread, has helped me realize what we need to do next -- as we get supports in place for next year some of it has to include some kind of therapy (either from the SD or out of our pocket) and maybe a more structured, predictable routine for drop off with the school personnelle (sp?). I've felt so helpless over the years about this separation issue that, although I've been extremely effective in other areas, I've just totally dropped the ball -- Until now, that is! :lol:

 

Thank you, thank you!

 

Malke

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So the standard tools used for kids with ADHD, etc... really ARE working for our classic PANDAS child. It'be been amazing.

 

This is so helpful!! Thank you for taking the time to spell out everything you've done and are currently doing. My daughter is in K now, but we (finally! by ourselves, with no help from the preschool) identified sensory issues when she was at the start of pre-K in the last school year. She could have really, really used all the things you described. It's no wonder I have PTSD around the separation issues...I didn't have any support either and things just got worse and worse. I'm so glad you had those kinds of supports in place for your son at such an early age.

 

I did have the thought this morning, before I read your post, that many of her issues right now are ones that are unresolved from years of undiagnosed sensory issues and really horrible seperation anxiety due to the SPD. I believe, at this point, that the only reason they have surfaced again in the last few months are:

 

a. Because she was snowballing into a major PANDAS episode (totally understandable)

 

...and then, as the abx and ibuprophen and Enhansa have been clearing the PANDAS symptoms,

 

b. As a learned behavior from recent PANDAS and all those years when we had NO supports in place.

 

Your reply today, and this entire thread, has helped me realize what we need to do next -- as we get supports in place for next year some of it has to include some kind of therapy (either from the SD or out of our pocket) and maybe a more structured, predictable routine for drop off with the school personnelle (sp?). I've felt so helpless over the years about this separation issue that, although I've been extremely effective in other areas, I've just totally dropped the ball -- Until now, that is! :lol:

 

Thank you, thank you!

 

Malke

If your child needs therapies, and not just accommodations, you'll want an iep. 504s are for accommodations that can be made w/o bringing in special services.

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So the standard tools used for kids with ADHD, etc... really ARE working for our classic PANDAS child. It'be been amazing.

 

This is so helpful!! Thank you for taking the time to spell out everything you've done and are currently doing. My daughter is in K now, but we (finally! by ourselves, with no help from the preschool) identified sensory issues when she was at the start of pre-K in the last school year. She could have really, really used all the things you described. It's no wonder I have PTSD around the separation issues...I didn't have any support either and things just got worse and worse. I'm so glad you had those kinds of supports in place for your son at such an early age.

 

I did have the thought this morning, before I read your post, that many of her issues right now are ones that are unresolved from years of undiagnosed sensory issues and really horrible seperation anxiety due to the SPD. I believe, at this point, that the only reason they have surfaced again in the last few months are:

 

a. Because she was snowballing into a major PANDAS episode (totally understandable)

 

...and then, as the abx and ibuprophen and Enhansa have been clearing the PANDAS symptoms,

 

b. As a learned behavior from recent PANDAS and all those years when we had NO supports in place.

 

Your reply today, and this entire thread, has helped me realize what we need to do next -- as we get supports in place for next year some of it has to include some kind of therapy (either from the SD or out of our pocket) and maybe a more structured, predictable routine for drop off with the school personnelle (sp?). I've felt so helpless over the years about this separation issue that, although I've been extremely effective in other areas, I've just totally dropped the ball -- Until now, that is! :lol:

 

Thank you, thank you!

 

Malke

 

We use both the help provided at the school district, as well as a seperate behavior therapist. We were very lucky that we identified PANDAS very quickly (after 6 months of realizing this was NOT the "terrible twos".) At his age, there is definately residual OCD as a result of "learned behavior". This is the way things were done for as long as he can remember, so even after the underlying medical cause is removed, some of the behavior remains, since he doesn't know any other way. We've found the behavior therapy helpful for that.

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  • 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
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