Question about schools?

[airial95]

My little guy won't even be 3 until late October, so we caught his PANDAS and have been treating it with some success very early. He's in the Early Steps program at USF - which is a developmental based therapy program that gets some federal funding. We chose that route because Dr. Murphy is at USF, and while the Early Steps program is part of the same college she's associated with - it's different departments. We figured they'd at least be familiar with PANDAS and it would be one less battle (our assumption proved correct!)

 

The problem, Early Steps only covers them until their 3, then they "transfer" them to the School Districts program to get them ready for school. We had our first meeting with the school district folks yesterday and I have to be honest - I don't know what to think.

 

First of all, if it hadn't been for USF automatically initiating the transfer (part of their policy) - we wouldn't have had a clue that we should be contacting the school district a over two years before he started school to get things rolling. They're going to do another assessment of him about a month before his birthday to see what he qualifies for (504, IEP, special ed, etc...) If he qualifies, they may even start him in a special ed pre-k immediately - the focus is on getting the behaviorally challenged child ready for school. We were lucky about the automatic transfer, because from what we were told yesterday, it normally would take 6 months (or longer) to get this initial meeting and then 2+ months after that to get the team together and assessment and plan put together. I coudlnt' imagine if we had waiting until he started kindergarden to do this! I had no idea!!

 

Not surprisingly, no one in the room had heard of PANDAS - so we had to explain. They were very interested though, and loved that I walked in with a packet of useful info that I keep on hand for just those type of conversations (I've learned a lot from all of you guys on here!!) Actually, I mentioned the Mystery Diagnosis episode from the night before and 2 of the girls had seen it - while my son isn't as bad as Sammy was, it gave them an idea of what we were dealing with.

 

Well, after a 2 hour meeting discussing my son's issues, needs, what they can "offer", etc...our heads are swimming. I'm still not sure the public school system is the right place for him. But my husband thinks that since we're getting in early it might not be that bad.

 

I know a lot of you on here have kids that are older, school age and were diagnosed much later than Broderick, but I was just wondering what type of school your kids go to? What accomodations are being made? Unfortunately, homeschool isn't an option for us, but I'm still trying to figure out what's going to be best for him?

 

I'd love to hear your stoires and exepriences with the schools - we've learned alot from these forums and it's helped us navigate our path with less resistence than we expected - partly because we're learning from what everyone else has been through!! THANK YOU!!

[kimballot]

My son started with preschool intervention at age 3 for behavioral issues, socialization, and sensory issues. We did not know it was PANDAS at the time - only knew he had problems when he had sinus infections. We had a couple of disasters along the way, but finally ended up in a typical preschool that had good structure, lots of space in the classroom, and a classroom with only about 12 kids - 8 of which were calm girls. The lead teacher had a child the previous year with sensory issues and was a strong believer in special ed and OT.

 

My son had an IEP in preschool We had an special education itinerant teacher (SEIT) who came from a program for kids with behavioral / emotional challenges (we had chosen to not put our son in that school, but wanted a teacher that understood these issues). We also had an OT consultant. My son went to school 4 days a week for mornings only (he left right after lunch). I think the SEIT and the OT came 2 times a week each - they worked with him in the classroom, gave the teacher ideas, and communicated with me. The OT pulled him out some times specifically to work on motor when he was having coordination problems.

 

Best of luck to you as you navigate this system! My biggest piece of advice is to visit any potential classrooms that you child would be in (public or private) to see if you think it would be a good fit.

Edited June 16, 2010 by kimballot

[thereishope]

How is your son now in terms of his last PANDAS exacerbation? My son had PANDAS surface in preschool at age 5. He was also in an Early Childhood program for speech services at the time and had/has an IEP for speech. He completed kindergarten last school year and will entering first grade. Currently, he is recovered and behaves well at school, I never once got any red flags from the teacher or school something was amiss at all this year.

 

So....for us, we have an IEP in place for speech. In the health history section PANDAS is cited. Every year I plan on having a discussion with the new teacher briefing them on what PANDAS may be like if he should get sick again. Currently, he does not need any accomodations. If the time comes (God forbid) and he gets sick agian, I will have to see the severity and what the symptoms are and contact the school at that time about what we can do collectively to help him. Luckily, my school is nice and I think they will work with us to guide him back to recovery.

 

He goes to a public school. There are about 24 kids to a classroom.

[ma2ar2rm2]

My son started with preschool intervention at age 3 for behavioral issues, socialization, and sensory issues. We did not know it was PANDAS at the time - only knew he had problems when he had sinus infections. We had a couple of disasters along the way, but finally ended up in a typical preschool that had good structure, lots of space in the classroom, and a classroom with only about 12 kids - 8 of which were calm girls. The lead teacher had a child the previous year with sensory issues and was a strong believer in special ed and OT.

 

My son had an IEP in preschool We had an special education itinerant teacher (SEIT) who came from a program for kids with behavioral / emotional challenges (we had chosen to not put our son in that school, but wanted a teacher that understood these issues). We also had an OT consultant. My son went to school 4 days a week for mornings only (he left right after lunch). I think the SEIT and the OT came 2 times a week each - they worked with him in the classroom, gave the teacher ideas, and communicated with me. The OT pulled him out some times specifically to work on motor when he was having coordination problems.

 

Best of luck to you as you navigate this system! My biggest piece of advice is to visit any potential classrooms that you child would be in (public or private) to see if you think it would be a good fit.

 

3 months ago I had never heard of PANDAS... and now I know that that is what my 8 year old daughter has.

She will be entering into the 3rd grade this fall... and I need to talk with her doctor.. but her counselor thinks I should try to get a 504 for her... She has never had trouble in school, perfect little child with straight A's.. BUT we need to do something to help protect her while she is at school. They think the 504 will help get a plan in place... sort of to help keep her strep free. If a child in the class has step a 504 would let the school let me know.. It could also do stuff like have her class room scrubed down daily to help keep infections out of the room(you think that would be a normal thing anyways but it's not).. I really don't know what all to ask for in a 504.. or what papers I should walk into the meeting with to help explaine PANDAS to them.. but I'm going to have to get it all together here shortly.

[airial95]

Thanks for all of your responses (and spelling out acronyms I might not be familiar with )

 

Our son was back to about 85-90% normal after his initial exacerbation. Our main issues are residual OCD and ADHD. Of course, some of that is par for the course with a 2 1/2 yr old. The initial episode lasted about 4 months before we got the dx, and he's been on abx since late January. A few weeks ago, after several weeks of near normalcy - our Dr. tried to take him off the abx to see if it was still needed for suppression - within 3 days we were back to demon child - and we were back on abx. (We found out a few days after starting abx again that there was a confirmed case of strep dx in his class while he was off - which could also explain his rapid spike). He's now back at about 65-70%. Before going off our meds, we were completely functional as a family - even with his residual OCD. None of his rituals were disruptive and he was self-regulating his meltdowns and verbalizing his need for his rituals much better.

 

We've been tracking in great detail his every symptom, and he will have a spike in issues for 3-4 days when exposed to strep (canary in a coalmine!) but other than that - when he's been on the abx he's been fairly functional.

 

Unfortunately for us and the school system - almost ALL of his symptoms ramp up mostly at school (unlike the other kids who can hold it in all day and explode on their families). He's usually so much better at home and on the weekends. Our Dr. thinks that's a result of his OCD - he can do all of his rituals and compulsions without anyone bothering him or messing things up. (He has some big spatial anxieties with things needing to be "just right" and don't even try to touch a door or he just won't go through.) At school, with 20 other 2 year olds running around, it's harder for him to be in control of what he needs to do - other kids "mess it up" (which we've now heard from our son many times).

 

We've been stressing about school now for some time, especially since his original assessment came back with him being WAAAAY above average cognitively, verbally and developmentally. This meeting with the district yesterday has just left our head spinning and not knowing what direction we should be taking.

 

Other than his PANDAS, the Dr is suspicious of Aspbergers, however, we've been told repeatedly by several differnt Drs and therapists that a definitive screening for Aspbergers won't be possible until he's a bit older. His assessment by the school will be the first attempt to screen for that.

 

It sounds like your kids were already in the system for other reasons prior to PANDAS - I don't know if that will make a difference or not in our case. I feel somewhat releived that we were told yesterday that they'll focus on the behaviors - not the cause. If he has OCD - doesn't matter why - they'll just give him skills and develop a plan to deal with the behaviors. They've already got a note in his "file" now though about having to be notified of strep immediately. Which is nice I guess?

[kimballot]

Thanks for all of your responses (and spelling out acronyms I might not be familiar with )

 

Our son was back to about 85-90% normal after his initial exacerbation. Our main issues are residual OCD and ADHD. Of course, some of that is par for the course with a 2 1/2 yr old. The initial episode lasted about 4 months before we got the dx, and he's been on abx since late January. A few weeks ago, after several weeks of near normalcy - our Dr. tried to take him off the abx to see if it was still needed for suppression - within 3 days we were back to demon child - and we were back on abx. (We found out a few days after starting abx again that there was a confirmed case of strep dx in his class while he was off - which could also explain his rapid spike). He's now back at about 65-70%. Before going off our meds, we were completely functional as a family - even with his residual OCD. None of his rituals were disruptive and he was self-regulating his meltdowns and verbalizing his need for his rituals much better.

 

We've been tracking in great detail his every symptom, and he will have a spike in issues for 3-4 days when exposed to strep (canary in a coalmine!) but other than that - when he's been on the abx he's been fairly functional.

 

Unfortunately for us and the school system - almost ALL of his symptoms ramp up mostly at school (unlike the other kids who can hold it in all day and explode on their families). He's usually so much better at home and on the weekends. Our Dr. thinks that's a result of his OCD - he can do all of his rituals and compulsions without anyone bothering him or messing things up. (He has some big spatial anxieties with things needing to be "just right" and don't even try to touch a door or he just won't go through.) At school, with 20 other 2 year olds running around, it's harder for him to be in control of what he needs to do - other kids "mess it up" (which we've now heard from our son many times).

 

We've been stressing about school now for some time, especially since his original assessment came back with him being WAAAAY above average cognitively, verbally and developmentally. This meeting with the district yesterday has just left our head spinning and not knowing what direction we should be taking.

 

Other than his PANDAS, the Dr is suspicious of Aspbergers, however, we've been told repeatedly by several differnt Drs and therapists that a definitive screening for Aspbergers won't be possible until he's a bit older. His assessment by the school will be the first attempt to screen for that.

 

It sounds like your kids were already in the system for other reasons prior to PANDAS - I don't know if that will make a difference or not in our case. I feel somewhat releived that we were told yesterday that they'll focus on the behaviors - not the cause. If he has OCD - doesn't matter why - they'll just give him skills and develop a plan to deal with the behaviors. They've already got a note in his "file" now though about having to be notified of strep immediately. Which is nice I guess?

[kimballot]

Sounds like your little guy is lucky to have such in-tuned parents and doctors! My son's issues in preschool truly WERE PANDAS, but we did not know it at the time. Every time he came off strong antibiotics he could not cope and had behavior problems - but we just attributed it to sinus infection and no one really made the connection (he was born in 1997, so PANDAS as a diagnosis is about as old as he is).

 

If your son is having problems mainly at school it is quite possible that this is related to sensory issues. My son had a great deal of difficulty in his 3-year-old classroom (before the great experience I described earlier). There were 36 kids in one room with 6 teachers. I thought "great - 6 kids per teacher"... not thinking of 36 kids, half of which were boys, all fighting over the same spaceship toy in the middle of the room during free time! All it took was for a kid to get too close when my son was off antibiotics and Wham-o .... some type of fight or flight response and a phone call home.

 

Take a look at some of the posts in here on sensory defensiveness and be sure that your son gets an OT eval (if he has not had one already) with his preschool assessment.

[mama2alex]

Definitely visit schools now. If you end up wanting to go the private school route, you'll want to have a good amount of lead time so he can shadow and do any testing when he's in a good place. And if you go the public route, definitely take them up on any 504 or IEP they offer, even if he's in a good place at the time. This protects him - and you!

 

Best of luck and so happy for you that you caught this early in his life.

[airial95]

Sounds like your little guy is lucky to have such in-tuned parents and doctors! My son's issues in preschool truly WERE PANDAS, but we did not know it at the time. Every time he came off strong antibiotics he could not cope and had behavior problems - but we just attributed it to sinus infection and no one really made the connection (he was born in 1997, so PANDAS as a diagnosis is about as old as he is).

 

If your son is having problems mainly at school it is quite possible that this is related to sensory issues. My son had a great deal of difficulty in his 3-year-old classroom (before the great experience I described earlier). There were 36 kids in one room with 6 teachers. I thought "great - 6 kids per teacher"... not thinking of 36 kids, half of which were boys, all fighting over the same spaceship toy in the middle of the room during free time! All it took was for a kid to get too close when my son was off antibiotics and Wham-o .... some type of fight or flight response and a phone call home.

 

Take a look at some of the posts in here on sensory defensiveness and be sure that your son gets an OT eval (if he has not had one already) with his preschool assessment.

 

 

Wow - sounds just like my little man - if a kid gets too close to him when he's having a bad day - all bets are off!! He spends a lot of time in the office with the directors. His class was mostly boys until recently too! I think the OT eval is part of what they'll be doing in the fall - but I'll make sure if it's not. Thanks!

 

We have been VERY lucky to have a great team of people on our side. While we were struggling before the dx, day care was FANTASTIC! They should've kicked him out so many times, but didn't. We think it was because my hubby and I were so involved trying to solve the problem rather than looking the other way because there was no way "our little angel" was behaving that way.

 

It was day care that finally pushed us to look at something other than just the "Terrible Twos" and dicipline solutions, even though we both suspected it might be something more. The director called me one day after an especially challeging 2 days (he spent both of those days in the office) and was very blunt and forward saying "there's something SERIOUSLY wrong with your son - this is not Broderick. We know Broderick, and I do not recognize the child flailing in front of me right now." We were at the Dr the next day, and the nurse even wondered if it was PANDAS before we saw the Dr. So we've been very lucky to have a Dr who has treated a few cases before, and believes in the long term abx route. The director at day care, after the appt with the Dr - but before we could tell her our dx even asked if we had ever heard of PANDAS. She has a PhD in childhood special ed and is familiar with it and thought the symptoms might fit Broderick. We both laughed when I told her that's EXACTLY what the dr said.

 

I admit, I almost feel a bit guilty that our path to a dx and treatment has been so much easier than most on here - but without everyone here paving the way and shouting it to the world, who knows where we'd be!

 

It's the school thing that scares us the most!!

[airial95]

Definitely visit schools now. If you end up wanting to go the private school route, you'll want to have a good amount of lead time so he can shadow and do any testing when he's in a good place. And if you go the public route, definitely take them up on any 504 or IEP they offer, even if he's in a good place at the time. This protects him - and you!

 

Best of luck and so happy for you that you caught this early in his life.

 

Thanks! That was presented to us as an option once we have the assessment for the public schools, and we're planning on it. I've requested information from a local charter school here in Tampa that focuses on kids with learning and sensory disabilities. I've also been looking into other charter schools for my daughter - but we'll probably expand the search a little more to get info for my son too. We're even coming to the realization that they may not end up at the same school (she's 4 and going into Pre-K next year).

 

Here's an article on the Pepin Academy in Tampa that we're looking at as an option:

 

http://www.tampabay.com/news/education/k12...ademies/1101169

[MomWithOCDSon]

I agree with pretty much everything that's been said here . . . visit the schools, arm yourself with knowledge about them and how they work, and arm them (especially the school that seems the best fit for your DS) with as much practical information as you can a bit before it's time to start school with them. I wouldn't get too far into the medical end of things only because it will make their heads spin and they'll be thinking, "But how does this apply in the classroom?" But I would give them as much information about the behavioral side of things as possible, including tips and tools for calming, expectations on your part about notification of illnesses in the classroom, absences due to exacerbation, etc.

 

And most of all, try as best you can to assume you're going to get kindness, compassion and cooperation, and present yourself and your materials with that upbeat attitude. I know that we've been exceptionally fortunate with our school district, but even with them, I was very wary and prepared to think the worst: "They'll just want DS to "fit in their box" and behave like all the other kids." "They won't understand him." "They'll only see the 'bad' and forget to encourage and celebrate the 'good' in DS." Etc. This was my cynical interior monologue, preparing myself for what I thought would be a battle at every turn. But my sister is a grade school principal, and she kept counseling me that the school didn't want to make trouble for us or DS; they genuinely want to make school a good experience for everyone: DS, teachers, us.

 

I've heard and seen some horror stories in this regard, so I know there are some "bad educational apples" out there. But for us, it has mostly (I'd say, 90%) been the opposite. We've been offered help at every step, understanding most of the time, kindness and creativity in fashioning accomodations for DS when his OCD poses problems for him in the school environment, etc.

 

I will say, PANDAS is something many, many people don't understand, so giving them information about notification of illnesses in the classroom, etc. is key. But, in the end, IMHO, it really doesn't matter if they agree/believe that your child has PANDAS or if they agree/believe that he has the hallmarks of another condition that PANDAS kids tend to mimic, like OCD or tics. When it comes to the behavioral stuff, many educators are familiar with the OCD, ADHD, anxiety and tic behaviors that can come into play, so if you parlay that familiarity into getting your DS the help and accommodations he needs to be succesful in school, everybody will feel validated and supported.

[airial95]

[quote name='MomWithOCDSon' date='Jun 16 2010, 05:41 PM' post=

 

And most of all, try as best you can to assume you're going to get kindness, compassion and cooperation, and present yourself and your materials with that upbeat attitude. I know that we've been exceptionally fortunate with our school district, but even with them, I was very wary and prepared to think the worst: "They'll just want DS to "fit in their box" and behave like all the other kids." "They won't understand him." "They'll only see the 'bad' and forget to encourage and celebrate the 'good' in DS." Etc. This was my cynical interior monologue, preparing myself for what I thought would be a battle at every turn.

 

You're in my head aren't you? Those are exactly ours thoughts! I guess that's why I'm asking the questions so I can come armed with everything I possibly can! Thanks for the insight