IEP update - they admit they were wrong!

[airial95]

I was here a couple of weeks ago venting about our utterly useless IEP meeting. Since they were dealing with something new and unknown, they wanted to watch and observe my son a while longer, and keep him in his normal daycare setting instead of enrolling him in special ed preschool with play therapy that will address his anxieties.

 

Well, on Friday we had a "education planning meeting" with the ESE teacher that's working with him, the rest of our ESE team, and my BFF in the whole world the ESE director (the one who said that since his PANDAS outbursts aren't affecting him developmentally, since he's likely gifted, we shouldn't do anything at all - WHAT???). About 10 minutes into the ESE teachers report on what she observed in her first interaction, she stopped short and said quite bluntly "Look, the 1 - 2 hours a week I'd be working with this kid just isn't going to cut it, he needs to be in the classroom. He is EXTREMELY teachable, and the little time I've spent with him he has made progress, but it has to be strongly reinforced when the anxiety hits - which isn't always when I'm there, so he needs to be in the specialized setting so we can get him the skills he needs for regular ed by K."

 

THANK YOU!!!! That's what we've been saying all along, but everyone looks at us like we've got two heads!

 

We can't formalize it until our follow up IEP meeting on the 16th, but he'll be starting school the Monday after Thanksgiving break - which is exactly what we wanted.

 

That's the good news. The bad news, we were at 85% or so better about a week ago, dealing with mostly residual OCD. He woke up Sunday (right before his big BDay party) ticcing away, and the Satan switch was flipped sometime Monday afternoon - yet to be turned off. The culprit - his sister woke up Wednesday morning with a "mosquito bite that really hurts" or as the Dr. likes to call it "impetigo". He checked out okay, but he's been reacting really badly to her outbreak. Normally our exposure backslides only last 2-3 days, but this time we're not so lucky - I'm counting the time change as part of the culprit too.

[thereishope]

First, glad the meeting went well. Second, could it be that he isn't rebounding in his usual 2-3 days because he is such close proximity to it, that it is in his own household? When it's been the 2-3 day setback, was it usual in response to someone being sick in school? I would think the setback would be more severe if the exposure is in the home.

 

What did the doc give for the impetigo? Did any ilness proceed the impetigo whether it be hand foot mouth, a cold? Do you think she may have caught it at the jumping place you had the party at? I'm sorry you're going through this!

Edited November 8, 2010 by Vickie

[airial95]

We had the same thought, maybe his upswing is lasting longer cause it's his sister this time. But when she had 5ths disease earlier this year (which is strep related too), his backslide only lasted a couple of days then. But, who knows. We normally have 2-3 days of terror, with a quick, drastic improvemtn, but then a climb back to where we started (85% normal in this case). It will take us a couple of weeks to get back there, if this exposure is anything like the others.

 

As for where she got it - that's anyone's guess. It could have been the bouncy house place, it wouldn't surprise me, but since he started ticcing the morning of (but before)the party, my guess is that she picked it up at school and it took a couple of days for the actual outbreak.

 

The Dr. didn't put her on an oral antibiotic, just altabax, this time since she showed no signs of systemic infection (because we had her in his office within an hour of her showing us the spot! Our Dr renamed his daughter's college fund the "Gorman Family Scholarship Fund" I'm in there so often for strep checks!!) But we've been watching like hawks for anyother symptoms - in either of them. So far so good.

 

We might be on the back side of our days of terror though. He had a HORRIBLE weekend (to the point I had to call my husband home from running errands because I about lost it), and he had a terrible meltdown on our way into day care today. I did get him calm before I left, and when I called to check on him at naptime, they said he was having a good day - no hitting, biting, kicking, etc... Normally, with bad drop offs during an exposure, it's game over for the rest of the day. So hopefully we're already past the worst of it and starting our climb back to baseline!!!

[peglem]

I was here a couple of weeks ago venting about our utterly useless IEP meeting. Since they were dealing with something new and unknown, they wanted to watch and observe my son a while longer, and keep him in his normal daycare setting instead of enrolling him in special ed preschool with play therapy that will address his anxieties.

 

Well, on Friday we had a "education planning meeting" with the ESE teacher that's working with him, the rest of our ESE team, and my BFF in the whole world the ESE director (the one who said that since his PANDAS outbursts aren't affecting him developmentally, since he's likely gifted, we shouldn't do anything at all - WHAT???). About 10 minutes into the ESE teachers report on what she observed in her first interaction, she stopped short and said quite bluntly "Look, the 1 - 2 hours a week I'd be working with this kid just isn't going to cut it, he needs to be in the classroom. He is EXTREMELY teachable, and the little time I've spent with him he has made progress, but it has to be strongly reinforced when the anxiety hits - which isn't always when I'm there, so he needs to be in the specialized setting so we can get him the skills he needs for regular ed by K."

 

THANK YOU!!!! That's what we've been saying all along, but everyone looks at us like we've got two heads!

 

We can't formalize it until our follow up IEP meeting on the 16th, but he'll be starting school the Monday after Thanksgiving break - which is exactly what we wanted.

 

That's the good news. The bad news, we were at 85% or so better about a week ago, dealing with mostly residual OCD. He woke up Sunday (right before his big BDay party) ticcing away, and the Satan switch was flipped sometime Monday afternoon - yet to be turned off. The culprit - his sister woke up Wednesday morning with a "mosquito bite that really hurts" or as the Dr. likes to call it "impetigo". He checked out okay, but he's been reacting really badly to her outbreak. Normally our exposure backslides only last 2-3 days, but this time we're not so lucky - I'm counting the time change as part of the culprit too.

I'll bet it feels marvelous to be vindicated!

Sorry about the strep!

[airial95]

Thanks, although shortly after I posted this - they called and had to reschedule the IEP meeting until after the Thanksgiving break, which means he won't start until a week later...but hey - it should only be a small setback!

[emmalily]

Great news! Glad you're getting him what he deserves!

[AmySLP]

Just wanted to weigh in on the Alabax & Impetigo. My daughter did not respond to this med, as it is specific to the bacteria that causes Impetigo. When my PANDAS daughter started to have an exacerbation of PANDAS at the same time, our ped took a culture of the rash & it was indeed strep. Changed Alabax to an oral ABX for my little one. However, in my 5 yr old, kick started her PANDAS again which had been in remission.

 

Just be aware of this in case it doesn't resolve with the topical.

[EmersonAilidh]

So happy to hear this! Good luck. <3