What to tell school?

[cobbiemommy]

Wondering what, if anything, I need to tell my son's school about PANDAS, IVIG, ongoing antibiotics, strep??? They already know that he was diagnosed with Aspergers. They wrote him an IEP for social skills (50 min a week) which I did not sign because I did not feel that it went far enough to help him. He is still getting social skills help even though I didn't sign it which I am pretty sure is a no-no. He missed some of the end of the year with extreme anxiety and outbursts, but had been having trouble coping since forever. We contacted Dr. K right at the end of the year and did the IVIg in early July. My son is less anxious now with no suicidal thoughts, better eye contact, less resistance to authority and improved attention. He still gets anxious in large groups and still has a limited set of interests. That is changing--I caught him reading my DD's Seventeen magazine! He is also on a decreased amount of Metadate, no Prozac and antibiotics. I would love to have him off the Metadate, but I feel like we can only change one thing at a time and its time will not come for another month.

 

Here's my concern. I tried to explain the whole PANDAS concept to the principal, but they looked at me like I was just another mom trying to explain away her child's behavior. Should I try again? Do I just tell them that he has a weakened immune system and that is why I need to know if someone around him is ill?

 

Scared to send him back to school with all the germs and stressors. He said that he will have a better year because he is new and improved because of his IVIg. The power of positive thinking!

 

Cobbie

[thereishope]

Does your child have a PANDAS diagnosis in writing from Dr K? If so, that would hopefully carry some weight. It is up to you how far you want to go with the school. If the prinicpal and staff at the school will not help and they are actually hindering your child's progress, contact the district and you can get an advocate o help you too.

 

How old is your son? As for the IEP and services, schools guard that like it's gold. They give out the minimum. Was that 50 minutes one day a week, split up between days? My son gets speech servcies and I had to fight for 45 min a week. Thsi year, because of his improvement, he's down to 30 min a week. Again, if you want moer in his IEP and they are not budging, get an advocate..and I do not they think they charge for services.

 

Finally, here's some links for you. Consider printing them off and handing them to the school. Just make a binder and hand it, in person, to the principal, one to the school psychologist and one to the school nurse.

 

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

 

http://www.schoolbehavior.com/disorders/p-a-n-d-a-s/

 

http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice

 

http://www.latitudes.org/forums/index.php?showtopic=6506

 

http://www.latitudes.org/forums/index.php?showtopic=6265

Edited August 11, 2010 by Vickie

[EmersonAilidh]

How old is your son? I know that in my experience it has helped a lot that I am actually able to explain it to my teachers instead of my Mom. On the first day of school I always have identical letters to hand to my eight teachers, & last year I was even able to get the teachers whose classes I had the most problems in in one room to explain it to them. I've noticed that teachers/faculty tend to respond better if it's a group discussion as opposed to a one on one thing.

What are your son's main symptoms? I try to draw attention to the ones that are most noticeable/undeniable, which in my case are the Narcoleptic symptoms. Go ahead, try to tell me I'm faking passing out to get special treatment, Mr. Gilbert. Another thing that I always stress to my teachers is that P.A.N.D.A.S. is NOT like every other kids' ADHD, OCD, etc.. etc.. because in all honesty I believe that both of these disorders are grossly overdiagnosed, which really makes it harder for people like us to get teachers to take us seriously. In my district it's called a "Student Support Team", but I have no idea whether or not this is a widely implemented thing, but they made a "contract" to put in my medical file to say that if I fell asleep in class, I was NOT to be woken up, & that I had twice as long to turn in absent makeup work. Even if that's not the name of it, I'm sure they have to have some system like that in other districts..

 

Also, above all else, I never mention that it's controversial. They don't need to know, & it's definitely not doing yourself any favors by instilling anymore doubt in their minds. School starts on the twentythird here & I am absolutely dreading it. Bells ring at sevenAM at my school, which does not bode well with someone who needs twelve hours a night just to stay awake in the day. Best of luck to you & your little one! Let me know if you need anything else. <3

[EAMom]

 

 

Also, above all else, I never mention that it's controversial. They don't need to know, & it's definitely not doing yourself any favors by instilling anymore doubt in their minds.

 

And hopefully none of the school officials will take it upon themselves to read up on PANDAS by going to Wikipedia. Grrrr. (That happened to us.)

[EmersonAilidh]

 

 

Also, above all else, I never mention that it's controversial. They don't need to know, & it's definitely not doing yourself any favors by instilling anymore doubt in their minds.

 

And hopefully none of the school officials will take it upon themselves to read up on PANDAS by going to Wikipedia. Grrrr. (That happened to us.)

 

Happened to me, too. :/ But that was back when the P.A.N.D.A.S. page was only a single biased paragraph, haha. How would we go about changing that??

[EAMom]

Now it's a few biased paragraphs by a Tourettes Nazi. Dh tried to change it but it was taking all his time and he wasn't getting anywhere.

[saidie10]

Does your child have a PANDAS diagnosis in writing from Dr K? If so, that would hopefully carry some weight. It is up to you how far you want to go with the school. If the prinicpal and staff at the school will not help and they are actually hindering your child's progress, contact the district and you can get an advocate o help you too.

 

How old is your son? As for the IEP and services, schools guard that like it's gold. They give out the minimum. Was that 50 minutes one day a week, split up between days? My son gets speech servcies and I had to fight for 45 min a week. Thsi year, because of his improvement, he's down to 30 min a week. Again, if you want moer in his IEP and they are not budging, get an advocate..and I do not they think they charge for services.

 

Finally, here's some links for you. Consider printing them off and handing them to the school. Just make a binder and hand it, in person, to the principal, one to the school psychologist and one to the school nurse.

 

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

 

http://www.schoolbehavior.com/disorders/p-a-n-d-a-s/

 

http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice

 

http://www.latitudes.org/forums/index.php?showtopic=6506

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Thanks for these links Vickie!