504 Plans

[poetmom]

With my ds starting Kindergarten on Monday, I read with interest a suggestion to get a 504 plan set up for him. I had to research what it was first...

I didn't even know such things existed.

 

So my question is who has one and what parameters did you set? Aside from putting him in a bubble, I can only protect him so much...

 

His class is a combined classroom with two K classes. No wall as a barrier, completely open room.

In your experience/opinion does one pull them only when several kids in the class are actually diagnosed with strep? Just one? Outbreak in the school?

 

I have two second graders in the same school living with us. If someone in one of THEIR classes is diagnosed with strep, does one pull him? them too?

When is it overreacting?

 

He was in preschool, but about the time he quit for the summer he also quit taking the daily penicillin. I see many here have only been on it for a year or so. Has there been consideration to keep them on it indefinitely?

 

My other concern about the penicillin that I need to discuss with his doc is that since his dad and I divorced he doesn't get it realiably during visiting times. Has even told me when I forgot to send it and realized it that evening and called to say I was bringing it over, "He'll live without it for a few days." And I have serious concerns about him being on and off it like that. Theory about enforcement of this is a far cry from reality...

 

Curious to hear opinions and experiences.

 

Thanks,

Robin

[P_Mom]

I have two boys, 6 and 9, who will be taking prophylactic antibiotics (penicillin vk right now) indefinitely. Their doc (Latimer) said they both will be on until PANDAS is "a distant memory." So, they will be on it well into their teens. Once you miss one dose of pen vk, you are unprotected for 3 days.

 

Kelly

[peglem]

But, you can miss a dose of zith without losing protective coverage. I'd also start using Xylitol nasal spray with them. Its bacteriocidal.

[EAMom]

His class is a combined classroom with two K classes. No wall as a barrier, completely open room.

In your experience/opinion does one pull them only when several kids in the class are actually diagnosed with strep? Just one? Outbreak in the school?

I think pulling a kid b/c others have strep is impractical. Plus, there will be carriers and kids that aren't diagnosed, or the kids that don't get reported. We had a lot of strep in our school last year. I think it just got circulated throughout the school for months. Our kindergartener tested positive in both Oct. and Dec. (no symptoms, we got her tested because of the strep notices and her PANDAS sister was ramping). You would need to homeschool to 100% really protect your child.

 

I have two second graders in the same school living with us. If someone in one of THEIR classes is diagnosed with strep, does one pull him? them too?

When is it overreacting?

 

Personally, I wouldn't. I would be vigalant about culturing household contacts. We cultured our non-pandas dd monthly during the school year once the strep notices started coming. Even consider getting some rapid tests to use at home if it is too much trouble to bring everyone into the doctor constantly.

 

He was in preschool, but about the time he quit for the summer he also quit taking the daily penicillin. I see many here have only been on it for a year or so. Has there been consideration to keep them on it indefinitely?

Yes. We plan on keeping our PANDAS dd on antibiotics for many years.

 

My other concern about the penicillin that I need to discuss with his doc is that since his dad and I divorced he doesn't get it realiably during visiting times. Has even told me when I forgot to send it and realized it that evening and called to say I was bringing it over, "He'll live without it for a few days." And I have serious concerns about him being on and off it like that. Theory about enforcement of this is a far cry from reality...

 

I would consider switching to Azith if you can't trust your ex to give the pennicillin. How many days per week does he have your son? You could even give the Azith. once weekly if needed.

[thereishope]

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Edited October 18, 2016 by vickie

[thereishope]

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Edited October 18, 2016 by vickie

[Chemar]

a 504 is a better option than the IEP in these cases I think, as IEP deals more with learning disabilities, where a 504 covers *all* aspects of the wide ranging symptoms (including emotional, frequent bathroom visits etc!!) found in PANDAS, TS etc

 

we initially had my TS son on an IEP but switched to a 504 which proved to be far better for him

 

my son had the 504 plan in place all the way thru school and it was one of the very best things we ever did!

We met at the beginning of school year with all teachers he would have that year, and had doctors notes plus his educational psychologists evaluation on his needs as well as our own requests re needed accommodations based on his sx etc. These would then be documented and each teacher got a copy and had to comply. I was entitled to request follow up meetings as needed with all or specific teacher to discuss new needs or concerns etc. the school nurse was always present too

 

altho dealing specifically with matters related to TS, this info on the TSA website may be helpful to you

http://www.tsa-usa.org/educ_advoc/education_main.htm

[ShaesMom]

This is our first year of having a 504 plan. I made sure they understood and had it written into the plan that if she started experiencing severe anxiety at school it was a sign that she was likely sick and they needed to call me. She also experiences joint pain in her legs so I told them if she was complaining of pain and didn't want to participate in an activity, ie P.E., they had to respect her decision. Same for complaints of migraines. If they feel she starts to abuse this then they are to call me and we can reevaluate how to handle it.

 

It is also written in that she will likely miss more than the required number of days of school due to illness and doctor appts. If we know of an absence in advance, I've requested that the teacher send any lessons home beforehand rather than having her try to catch up.

 

Because she has also been dx'd with an immune deficiency, the school is to notify me if anyone in her class and her brother's class has strep or the flu so that I can watch her for signs of illness. If there is a significant number of ill students in her class or the school, I can pull her out at any time.

[thereishope]

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Edited October 18, 2016 by vickie

[Suzan]

We will be getting one for the first time this year. I have no idea what t expect or how to go about it. The school is going to help so I hope we get something that is good. I know for DD8, I'm putting something in there about her sensory issues and hopefully that she will be allowed to wear something to cut the noise in the classroom. She was not allowed by her teacher last year and I did not push it but she's stressing about the noise level. And she is in a Montessori program. They should be quiet but with 24 kids in a class, it's hard I'm sure.

 

Also, hopefully something about having access to a bathroom when she needs it (no with holding bathroom visits for any reason as long as I don't think she's abusing it) and if she's getting out of hand in any way, a trip to the water fountain, or some other errand to redirect her before just getting regular discipline. That never works but a nice walk or other job really helps turn her around. She usually gets keyed up because other kids in the classroom are crowding her or touching her too much.

 

Our school just went to uniforms so I also will have permission to allow her to wear a non-collar shirt since those throw her into a sensory fit and cause her actual pain!

 

Oh gosh, I could probably type on and on about what I hope for. I'm getting totally stressed about school starting next Tuesday. She's an emotional wreck and I think she's getting stressed too. I can feel the separation anxiety welling at our house.

 

Susan

[Chemar]

Remember to keep a list of accommodations needed and add to it each time you think of something...then take it with you to the meeting.

 

if you have a doc or educational psychologist who will add many of those in their letter/report it carries so much more weight

 

we found the older teachers were usually really good at implementing the needed accommodations, but the younger ones sometimes need a meeting or two to "get it" and ensure that they allow what is necessary.

 

dont hesitate to call the special ed person in charge or school nurse or guidance counsellor to request a meeting if you feel a teacher isnt providing what is written in the plan, or if things need to be added

[Chemar]

and a PS

for those who have a TS diagnosis...remember it is the LAW for them to give the accommodations needed under IDEA ...classified "other health impaired"

 

some schools are great with providing what is needed but some can be a real pain!!!! with TS diagnosis you have the law on your side to demand the accommodations required for someone with TS

[ShaesMom]

Oh Susan, I really feel for you right now. The separation anxiety is horrible for everyone. It was so heart breaking to have to send Shae to school when she was sobbing and clinging to me. Did you see the link to the article on separation anxiety I posted on the post about returning to school? I shared it with the school so they wouldn't try to tell me this year that I was causing her anxiety like they did last year.

 

I'll keep you in my prayers this week.

 

Sam

 

 

We will be getting one for the first time this year. I have no idea what t expect or how to go about it. The school is going to help so I hope we get something that is good. I know for DD8, I'm putting something in there about her sensory issues and hopefully that she will be allowed to wear something to cut the noise in the classroom. She was not allowed by her teacher last year and I did not push it but she's stressing about the noise level. And she is in a Montessori program. They should be quiet but with 24 kids in a class, it's hard I'm sure.

 

Also, hopefully something about having access to a bathroom when she needs it (no with holding bathroom visits for any reason as long as I don't think she's abusing it) and if she's getting out of hand in any way, a trip to the water fountain, or some other errand to redirect her before just getting regular discipline. That never works but a nice walk or other job really helps turn her around. She usually gets keyed up because other kids in the classroom are crowding her or touching her too much.

 

Our school just went to uniforms so I also will have permission to allow her to wear a non-collar shirt since those throw her into a sensory fit and cause her actual pain!

 

Oh gosh, I could probably type on and on about what I hope for. I'm getting totally stressed about school starting next Tuesday. She's an emotional wreck and I think she's getting stressed too. I can feel the separation anxiety welling at our house.

 

Susan

[Suzan]

Oh Susan, I really feel for you right now. The separation anxiety is horrible for everyone. It was so heart breaking to have to send Shae to school when she was sobbing and clinging to me. Did you see the link to the article on separation anxiety I posted on the post about returning to school? I shared it with the school so they wouldn't try to tell me this year that I was causing her anxiety like they did last year.

 

I'll keep you in my prayers this week.

 

Sam

I did see that article, it is great. I actually sent it along to someone else I know who has a middle school aged ds who is having major troubles with anxiety and school and she found the article really helpful. Thanks for reminding me about it. I'll go read up on it again....I like the idea of sharing it with the school. dd has a new teacher this year who is also leaving on maternity leave after 1 month. It's not feeling like a good start to the school year!

 

She's starting up with the "Mommy, will you check on me, how long? In 5 minutes? Don't forget" before we go to bed. And she's asking if I can drop her off at school the first week instead of the bus, just the little comments starting, and the emotions kicking into high gear. It's simmering..... Thanks for your prayers. We need it!

 

Susan

[Kayanne]

I started the process of trying to get an IEP for my daughter. I have never heard of a 504...I think it would be more useful than and IEP in our case. Thanks for posting this...I'm going to look into it.