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Stop Tics Today - Find the real causes to find the cures




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Dr Letter for school re:PANDAS


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8 replies to this topic

#1 Healingthedude

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Posted 23 February 2011 - 11:05 AM

Hi,
My son's school called me in to implement a behavior plan to address his motor tics.
They are currently at 500 plus per day.
They want to give him a piece of candy for every 2 minutes he does not open his jaw/mouth-
with a timer asking-did I keep my mouth closed?
If he keeps it closed he gets the candy, if not they reset the timer and try again.

I obviously know this is medical and have talked to Dr B about writing a note stating such.
Drawing his attention constantly to the tic and trying to control it will likely induce anxiety and make it worse.
We are also concerned that one of his school aides may be a carrier of strep and that is why we cant get rid of the tics
and OCD since they switched all the staff around last summer.

Does anyone here have a good note to address PANDAS with the school,
that I could forward to his Docs to modify. They are very busy, but willing to help.

Also, has anyone ever requested the school aides of a child with ASD/PANDAS
to get tested for strep (ASO/Anti DNASE).
I don't want to be unreasonable, but this has been going on since July and making life
very unmanageable.
Thanks for your help.

Carolyn


#2 smartyjones

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Posted 23 February 2011 - 11:13 AM

i'm so sorry to hear that this is what your school is coming up with for a solution. do you have an IEP or 504?

have you checked out http://pandasnetwork.org/ for the new sample school letter? i very much like it. it's a good concise explanation, then has the "orchestra analogy" and then you can add personal info. i seem to recall it was more worded for behavior than tics -- but that could be b/c that's my son's issues so i may have interpreted it that way -- still, you could easily modify it for your situation.

#3 peglem

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Posted 23 February 2011 - 11:26 AM

Hi,
My son's school called me in to implement a behavior plan to address his motor tics.
They are currently at 500 plus per day.
They want to give him a piece of candy for every 2 minutes he does not open his jaw/mouth-
with a timer asking-did I keep my mouth closed?
If he keeps it closed he gets the candy, if not they reset the timer and try again.

I obviously know this is medical and have talked to Dr B about writing a note stating such.
Drawing his attention constantly to the tic and trying to control it will likely induce anxiety and make it worse.
We are also concerned that one of his school aides may be a carrier of strep and that is why we cant get rid of the tics
and OCD since they switched all the staff around last summer.

Does anyone here have a good note to address PANDAS with the school,
that I could forward to his Docs to modify. They are very busy, but willing to help.

Also, has anyone ever requested the school aides of a child with ASD/PANDAS
to get tested for strep (ASO/Anti DNASE).
I don't want to be unreasonable, but this has been going on since July and making life
very unmanageable.
Thanks for your help.

Carolyn

OMG! The school's "treatment", I think, has the potential to do a lot of damage. Why in the world would anybody address tics this way?

I don't know if you can actually demand medical testing/treatment of a staff member, but if they understand your child's medical condition, they might do it voluntarily out of concern for your child.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#4 Healingthedude

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Posted 23 February 2011 - 11:40 AM

i'm so sorry to hear that this is what your school is coming up with for a solution. do you have an IEP or 504?

have you checked out http://pandasnetwork.org/ for the new sample school letter? i very much like it. it's a good concise explanation, then has the "orchestra analogy" and then you can add personal info. i seem to recall it was more worded for behavior than tics -- but that could be b/c that's my son's issues so i may have interpreted it that way -- still, you could easily modify it for your situation.



Thanks. this is a good place to start!

#5 shadowtails

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Posted 23 February 2011 - 12:10 PM

Can't you request a new aid? I don't know, but it sounds abusive to me with what they are doing.

#6 Fixit

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Posted 23 February 2011 - 01:05 PM

Can't you request a new aid? I don't know, but it sounds abusive to me with what they are doing.


i agree..good choice of words...
please do not let them do this..behavioral theorpy should not be done be trying to catch it out of the corner of your eye...
it will make the tics worse the more attention drawn...
what do they care if he is opening his mouth!!???
let my son come in stomping, screeching, and hitting himself...that will give them something to work on

#7 kimballot

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Posted 23 February 2011 - 03:43 PM

Carolyn - first off... let me say that I am very sorry that you have to deal with this in your child's school. I am wondering who had the idea to use behavioral reinforcement for a jaw tic (not to mention that it is CANDY- ugh).

I think you can probably find support for this from the TS association. They are a well-established association, have parent groups in most areas, and have people who can educate your child's school about tics.

The TS folks may not be familiar with PANDAS or may not believe your child has anything different from TS, so be prepared for that.... but I would approach this as a tic disorder and seek help from there.

I cannot comment on the idea of the aide having strep. I don't know if you can do this if the aide does not have any symptoms. I am sure there are very specific rules about privacy and what can be requested.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#8 Healingthedude

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Posted 23 February 2011 - 05:47 PM

Thanks, everyone. I know it is bs what they are proposing to do. I have to be firm but respectful with my boundaries on this.
I think there is a behavioral component, when demands are put on the child the tics get worse-thats why I am requesting them to teach-
asking for a break, different ways to calm himself, ignore and redirect to work, offer more sensory breaks etc.

I am just not going for the extinguishing the behavior with candy part. Just not gonna work as well as antibiotics Jeez.
I need a Drs note to make it clear-they do not want to hear it from me.
It's upsetting to see how much they don't get it. Anyway, I was looking at the TS site here-maybe I will post to get input there as well
and hopefully have a Drs note in the next day or two. Thanks for all your input-makes me feel less alone in all this.

#9 3boysmom

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Posted 23 February 2011 - 09:57 PM

OK, I have not posted anything for awhile now. I have been too busy with the reality that we no longer have 1 son with PANDAS, but 3 sons with this! I feel that I NEED to reply to this BS behavioral plan that the school has set up for your son! I have never posted on here that I am a Special Education teacher. I have a degree in Reg. Elem. Ed and Special Education. I have been working with special needs students for about 15 years. THAT IS THE STUPIDEST PLAN I have ever heard! Candy to control an uncontrollable head tic! Seems like this is sure to raise his anxiety and cause him to be reminded “every 2 minutes” that he is a failure at something that his teachers think he is doing on purpose…how stressful! When Autism began to sky-rocket in the schools, we had a diagnostician that told me I had to write a B.I.P. (Behavior Intervention Plan) for all Autistic students. The first student she requested that for had "hand flapping" behaviors. After working with this student I began to refuse to write a B.I.P. for tics and "steaming" behaviors! I told her that you can not “BIP” a child out of Autism! Also, there are always replacement behaviors, if it is something you can overlook and live with, then ignore it or it may be replaced with one that is worse. I hate reading things like this because it makes some of us very dedicated teachers look like a bunch of idiots. We now have 15 AU students at our neighborhood elementary because our Special Education Team "gets it" and so the reputation has gotten out and people are moving in to have their special needs children attend. I am not trying to brag, but only pointing out that "we" would never suggest candy to stop an uncontrollable "tic". The other ideas were good....sensory breaks, go for a walk....but I would think that trying to minimize the issue (and avoid putting it in the “spot light” with everyone hearing and looking up at him when the timer went off) would be a good start! How about having him sit toward the back of the room where he is not having an “audience”. I can’t remember how old, what grade, or if he has special needs other than PANDAS or I would be much more specific with ideas. He needs support, encouragement, understanding and consoling.

I do not know if testing his Para Professional would be the answer, because it could be the child that sits next to him in class that is the carrier...then what? Strep is everywhere in the public schools and many parents load their sick kids up with Advil and send them to school. Good luck with your school meeting and even though you do not want to be the “squeaky wheel” you do not have a choice…who else will stand up for what is best for him?

Blessings,
3boysmom




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