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Our public school has been absoutely unsupportive and uncooperative through all this, and my son seems miserable there. I think part of it is separation anxiety, part is the large class size and chaotic environement (he's sensitive to noise), and part is that he has picked up on the bad vibe from the teacher/administrators.

 

We've found a small private school nearby that seems to focus heavily on social/emotional growth and he would be in a class of only 11 kids. We've applied and he went for a day yesterday, but had to come home at noon "to be with his mom." We were very honest and open on the application, and that combined with his refusal to stay all day seemed to throw a wrench in things. They said academically, he's more than suitable, but they now want to talk to his current teacher about him on the phone in addition to the regular teacher form they would normally send her. We are working hard to convince them that we're not a "bad" family and that he's a good kid, etc, but part of me isn't even sure he'll make it in private school due to separation anxiety. My hope is that once he's settled in, the small setting and supportive staff will allay his anxiety to the point that he's no longer putting up a fight over going to school every day. But of course I have no way of knowing if this will actually work out. I feel like I'm living in a house of cards.

 

Wondering if anyone else has switched to private school because of separation or other PANDAS symptoms, or anyone who was already in private school when their child became ill? Do you think private school is a better situation for kids with PANDAS? Any advice on working with them both now and after he gets in (if he does get in)?

 

Thanks!

Jennifer

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My son is at a private school and they have been nothing but supportive during this nightmare. Multiple times I have asked if dealing with this is too much and they have said no. I have not had to worry about days miseed, etc. I have nothing else to compare it to but it has been hassle-free and they seem very willing to learn and help my son.

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Hi Jennifer, that is tough. My daughter is in a large, urban public school. She is in first grade, pandas started last year. Luckily, they have been fine with everything. I basically do what we need to do, and they don't have a problem with it.

 

Two thoughts: Does your son see a psychologist? I would see one with him, you could come up with a plan for getting him into school for the full day. The psychologist could also then give you a letter with diagnosis: pandas, ocd, sep anxiety, and the accomodations or plan for handling it. Possibly follow that up with a note from a medical dr (neurologist?).

 

The other thought is, when my dd's infection was finally addressed in a serious way (long term full strenght zithromax) we saw a huge change, and she was able to go to school much more regularly. Have you had any success treating him with antibiotics and/or steroids?

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Hi Jennifer, that is tough. My daughter is in a large, urban public school. She is in first grade, pandas started last year. Luckily, they have been fine with everything. I basically do what we need to do, and they don't have a problem with it.

 

Two thoughts: Does your son see a psychologist? I would see one with him, you could come up with a plan for getting him into school for the full day. The psychologist could also then give you a letter with diagnosis: pandas, ocd, sep anxiety, and the accomodations or plan for handling it. Possibly follow that up with a note from a medical dr (neurologist?).

 

The other thought is, when my dd's infection was finally addressed in a serious way (long term full strenght zithromax) we saw a huge change, and she was able to go to school much more regularly. Have you had any success treating him with antibiotics and/or steroids?

The psychologist is a very good idea. Sounds like the new school is casting about for ideas to help them handle this, and a good psychologist should be able to give them some ideas and tools.

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I think a psychologist/therapist is a great idea, as well. We've worked with one to re-integrate our son back into school after having had to pull him out for a while a few months ago. So far, so good!

 

Also, though I can't remember the details of your son's PANDAS symptoms, is separation anxiety the primary issue? Or does he have other symptoms that interfere with his participation/progress in school? Have you considered a 504 plan which would provide some accommodations for him?

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Jennifer,

does it have to be private school? I don't know if you have this in your area, but here, our district has classes inone of the schools for the special ed kids. now some of them are autism, yes, but I know two parents who put there kids there because of other issues. one child had some problems with what the school thought was bi-polar and they felt he would fare better in the smaller class setting. The other was a girl who had a number of problems with learning, so again, the smaller classroom setting and attention were much better for her. In other words, they wouldn't get lost in the shuffle and receive better one on one attention. .... has the school ever suggested that type thing? (I beleive you would need a letter of diagnosis plus go thru the school testing for this, but it is paid for thru the district, I believe).

 

Faith

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Hi Jennifer, that is tough. My daughter is in a large, urban public school. She is in first grade, pandas started last year. Luckily, they have been fine with everything. I basically do what we need to do, and they don't have a problem with it.

 

Two thoughts: Does your son see a psychologist? I would see one with him, you could come up with a plan for getting him into school for the full day. The psychologist could also then give you a letter with diagnosis: pandas, ocd, sep anxiety, and the accomodations or plan for handling it. Possibly follow that up with a note from a medical dr (neurologist?).

 

The other thought is, when my dd's infection was finally addressed in a serious way (long term full strenght zithromax) we saw a huge change, and she was able to go to school much more regularly. Have you had any success treating him with antibiotics and/or steroids?

 

Thanks for your response! We're working with a psychiatrist who is familiar with PANDAS. It's a good idea to bring her in on this, or at least offer that support.

 

He's been on progressively higher doses of Azith since August. He's been on 500mg for the last 3 weeks and 375mg before than for quite a while. He's 63lbs. We also did IVIG in December, about 7 weeks ago. We've seen some some improvements, but he's really not significantly better and he's having more frequent and intense outbursts. I think part of his anxiety is that he'll "lose it" at school, although he never has. We're starting to take a closer look at the possibility that he has Lyme and/or Lyme coinfections, as he tested positive for Bartonella.

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Separation anxiety is his primary problem at school - the only one that affects the school at any rate. He can't eat around bees or when he can see stickers, so there's been some food restriction at school. The teacher did let us switch his desk for rainy days when they eat in their classroom, because it had a sticker inside it. I also think he's had some social problems at school related to being teased about being home-schooled for a month. The kids weren't very nice about it. At home, it's fear of a robber or bomb in the house, checking, giant meltdowns, moodiness, bedtime fears, fear of the dark. Knock on wood, this has not affected his ability to do his schoolwork (except for tantrums about homework occasionally). I asked for a 504 plan meeting at the beginning of the year and the principal told me my son doesn't qualify because his only problem is attendance. We asked for one in writing, and said our doctor would be joining the meeting, but we haven't heard back. Really all we wanted to ask for was some regular communication about this, and for some help when he's having a bad morning and I try to drop him off but he can't separate.

 

 

I think a psychologist/therapist is a great idea, as well. We've worked with one to re-integrate our son back into school after having had to pull him out for a while a few months ago. So far, so good!

 

Also, though I can't remember the details of your son's PANDAS symptoms, is separation anxiety the primary issue? Or does he have other symptoms that interfere with his participation/progress in school? Have you considered a 504 plan which would provide some accommodations for him?

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I am so sorry -- this sounds like a really rough time. We are in a small private school (14 in a class and very nice kids)--I cannot imagine how we would have handled last year without the "kid" support our d received.

 

That being said, a few things stand out to me, first the 504 issue. If you have a medical diagnosis or psychiatric (OCD?) you can try to make the case that he should qualify under "other health impaired". Try doctor or psych. support and to document symptoms to get accommodations--get the therapist to come in or make a phone call to the school counselor. Request a meeting with the special ed. administrator for the district--go beyond the Principal (they may not be supportive for variety of reasons.)

 

I guess the other issue is the health and well being first and foremost must come first--before academics in my opinion.

This healing takes time, time, and more time. Are you seeing a plateau in improvement while on antibiotics?

 

We found a steroid burst helped tremendously when our d hit a plateau on antibiotics--just a thought.

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Separation anxiety is his primary problem at school - the only one that affects the school at any rate. He can't eat around bees or when he can see stickers, so there's been some food restriction at school. The teacher did let us switch his desk for rainy days when they eat in their classroom, because it had a sticker inside it. I also think he's had some social problems at school related to being teased about being home-schooled for a month. The kids weren't very nice about it. At home, it's fear of a robber or bomb in the house, checking, giant meltdowns, moodiness, bedtime fears, fear of the dark. Knock on wood, this has not affected his ability to do his schoolwork (except for tantrums about homework occasionally). I asked for a 504 plan meeting at the beginning of the year and the principal told me my son doesn't qualify because his only problem is attendance. We asked for one in writing, and said our doctor would be joining the meeting, but we haven't heard back. Really all we wanted to ask for was some regular communication about this, and for some help when he's having a bad morning and I try to drop him off but he can't separate.

 

 

I think a psychologist/therapist is a great idea, as well. We've worked with one to re-integrate our son back into school after having had to pull him out for a while a few months ago. So far, so good!

 

Also, though I can't remember the details of your son's PANDAS symptoms, is separation anxiety the primary issue? Or does he have other symptoms that interfere with his participation/progress in school? Have you considered a 504 plan which would provide some accommodations for him?

 

I am always amazed when I hear about schools reluctant to grant 504 plans, namely because it really doesn't cost them anything but the time for a meeting, typically once each year. It doesn't make any particular services (school psychologist, for instance) available to your son or anything like that, so it's ridiculous to me that a district would "withhold." The only thing I can figure is that they're concerned that a 504 might be a "gateway" to a more intensive IEP, which would require them to spend some time, money and services on helping your child in the school environment.

 

So, even though he does okay academically and most of his symptoms don't seem to show up at school, is there any chance they interfere with standard "measuring" of his performance, aka, statewide standardized tests required for federal funding, Every Child Left Behind, etc.? Looking back on it, I think that's why my son was so readily granted a 504 in third grade . . . because his anxiety prevented him from performing well on timed tests, and the SCHOOL (more so than we) wanted a 504 plan in place so that he would legally be granted untimed testing, resulting in better test scores for the school!

 

Maybe this is an angle you could try to get some traction on the 504?

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We do private school and it is a double edge sword. On the one hand, it is great to have small classes. Also, I know the teachers and students very well, and I am very involved and on top of things. On the other hand, this particular school goes at a fast pace. I think it makes things harder because my daughter, who needs extra time, holds them back. And because it is a small school, everyone knows it. It can work both ways.

 

I think before I entered the private school, I would make completely sure that EVERYONE was aware of the situation and on board with it. I would not change without that assurance.

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Thanks for your response! We're working with a psychiatrist who is familiar with PANDAS. It's a good idea to bring her in on this, or at least offer that support.

 

 

oh my - just lost my whole long post - - long and short of it, my son is at a private school. they have been supportive - come up with a good solution of him going to morning care where i can physically hand him over if i need to in a small room. is the new school willing to look for creative solutions? last year, not i nor the school even thought of this, they came up with it over the summer and it's worked great.

 

we are looking to switch him to public next year - many reasons - end of primary program - financially, it's time - if there is a problem, they are small and just don't have the people/resources to help. he's been fine this year, but it's a small staff. have you thought of worst case scenario and who would help and where he'd go.

 

school was relieved to hear about our seeing behavior therapist and then psychologist and hear ideas. our current psych terms it that they just are worried something will go wrong and they'll have nowhere to turn. have you involved new school with psych or let them know you have that end covered? be clear about your expectations of the staff - sometimes they're worried you're expecting something too big from them and it's not even what you're thinking. have a plan worked out and be sure eveyone is on the same page.

 

does your county have an special office you can go directly to? we are not in the public system, so i just called the county child find office for a speech issue b/c we didn't have a principal. can you just go directly to them and find out options - perhaps another school with a more suitable program in the county?

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Don't know anything about your religious viewpoints, but we go to a private Christian school and I absolutely love it. Not all private schools are the same for sure. We pulled our daughter out of the last one she was in because they wanted to produce Harvard graduates, which is fine if you are inclined to it. We did not need that - we just needed a supportive environment, not only for our daughter, but for us as well.

We sold our house and moved to attend the school she is going to now. We love it. Our daughter is accepted for who she is by her teacher and the administration. They knew it going in - the good, the bad and the ugly. They give her accomodations and even though the class size is not all that small, they take the time to make sure she succeeds.

My dd failed the 4th grade last year. This past quarter she made the A/B honor roll. She did that still in the midst of PANDAS - so I totally give the honor to God, first of all - but to her teachers and the administration who have put blood, sweat and tears into her.

I think that is the key - if you are going to go private interview to the max. You will know when you have found the right one. If they even hesitate when telling them your situation move on. There are schools out there that really do care about your child and want to see them succeed and will do whatever it takes to help make that happen.

Public school does have it's pluses if finances are of concern and also you have the law on your side when dealing with a public school. I don't think private schools have to adhere to ADA or any other law concerning IEP's but finding one that CHOOSES to do that is where you need to be shoudl you choose to go that route.

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Thanks T. Mom. I hadn't thought of going to someone at the district level - we've been trying so hard to work with the school and not alienate them. I think our first choice at this point is to just take him out of there. I'm happy to work cooperatively with any school, but I just don't have the time or energy to fight with a school that won't even acknowledge that my son is sick. But if we can't find the right private school, I will seriously consider escalating the problem to the district level soon.

 

Health wise, I was feeling like he had hit a plateau, but this week we're seeing some good things. We may just be seeing the saw-tooth recovery that many have talked about. Last two nights he wasn't worried about a robber in the house, and didn't ask us to check - this is huge for us. He's been talking about his "goals" the last two days - something I've never heard before (he's 9 1/2). He's been having huge upsets in the mornings, but today I put some food in his mouth right after he woke up, and he had a great morning. I'd remembered Pixiesmommy talking about this, and it seems to work for us too. So maybe we are headed in the right direction after all - it's so hard to tell sometimes.

 

Thanks again.

 

I am so sorry -- this sounds like a really rough time. We are in a small private school (14 in a class and very nice kids)--I cannot imagine how we would have handled last year without the "kid" support our d received.

 

That being said, a few things stand out to me, first the 504 issue. If you have a medical diagnosis or psychiatric (OCD?) you can try to make the case that he should qualify under "other health impaired". Try doctor or psych. support and to document symptoms to get accommodations--get the therapist to come in or make a phone call to the school counselor. Request a meeting with the special ed. administrator for the district--go beyond the Principal (they may not be supportive for variety of reasons.)

 

I guess the other issue is the health and well being first and foremost must come first--before academics in my opinion.

This healing takes time, time, and more time. Are you seeing a plateau in improvement while on antibiotics?

 

We found a steroid burst helped tremendously when our d hit a plateau on antibiotics--just a thought.

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