Communicating about PANDAS with School - Great old posts

[momtocole1]

March 1, 2009, Browneyesmom

 

Return to Latitudes Home Page (www.latitudes.org)IPB PortalHelpSearchMembersCalendar

Logged in as: momtocole1 ( Log Out )

I was searching older posts for help in how to communicate with my son's school about PANDAS. I came across this list compiled by worried dad back in March of this year. I printed all of these and I am going to highlight them and give them to my son's teachers. They were so helpful, Thank you to all that compiled these. The one that was the most helpful was written by an adult who had Sydenham's Chorea. It was so enlightening and gave me insight to how my son is suffering while trying to stay still at school.

 

What was helpful was to see it explained as PANDAS basically being "Atypical Sydenham's".

 

I swear they should just rename PANDAS Sydenham's II. Then we could get antibiotics for our kids until there 21 without a blink of an eye and most likely get much better insurance coverage for the IVIG or PEX. Also, it would help some of these stubborn doctor's to look at this as a serious disease. In one of Dr. Cunningham's quotes she states PANDAS is like a rheumatic fever of the brain. I may not be quoting it exactly right, but that is the gist of it. I mean what is it going to take to get these doctors on board.

 

I know there is another way to just link this page to that old post or "repost" the old post, but I'm sorry I don't know how. So I just cut and pasted it.

 

I hope this is helpful, it really helped me...

 

Good Night...

 

Judy...

 

 

My Controls · View New Posts · My Assistant · My Friends · 0 New Messages

 

 

 

 

 

 

ACN Forums > Advanced, Complementary, and Alternative Approaches > PANDAS

Need to help school understand PANDAS, Any good research studies?

Options

browneyesmom

Mar 1 2009, 05:13 AM

Post #1

 

 

Advanced Member

 

 

Group: Members

Posts: 67

Joined: 9-February 09

Member No.: 3717

 

 

 

My daughter has missed a lot of school this quarter and there have been many more days that she has been late for school in the mornings.

 

However, she keeps a lid on her emotions while at school, does not tell anyone there about her auditory/visual hallucinations, they seem to think that her schoolwork struggles are actually a result of her absence issues (they have no idea how much we are working with her at home), she never has enuresis there (thank goodness), she does not talk so much about her worries there, they don't see her separation anxiety, baby talk, and they have plenty of other kids to watch, etc., etc.... I'm sure you are all rather familiar with this story yourselves.

 

Thus, my problem is that they do not see at school... what I see at home.

 

She is on round 3 or 4 (we are uncertain about a time in Dec) in a row of strep infections and although she did improve dramatically on Amoxicillin with the last infection, she has been doing worse recently with this last one and we have not yet seen improvement. She is currently on both Augmentin and Azith, since Weds.

 

She has several assignments due this week and next and I am not sure at this point, if she is going to be able to complete them on time. Yesterday, we worked on them a good bit, but she had a lot of points where she kept saying it was "too hard", which is very much like what I heard when she was going through the worst of it and her grades plummeted the first few weeks of this year.

 

I want to help her school/teachers understand what she is dealing with here and just how debilitating this is for her, but I'm uncertain how to clearly convey this AND back up what I say so they believe me, rather than think I am slacking in parental duties... which honestly, I think is what some of them think at this point. I don't know about other places, but here, it can become a court issue and frankly, we're going through enough without adding that to the mix. What we need, is for them to understand and support her right now, but it seems that PANDAS is so poorly understood (unheard of) that all they are able to wrap their heads around is that she is having strep throat infections and they just do not comprehend how that could cause all this trouble for her when it does not for other kids.

 

Does anyone know of ANY research studies ~ or ANYTHING else that might help me in educating them about PANDAS? I appreciate any input you might offer! Thanks so much!!

 

 

 

 

 

Replies

Worried Dad

Mar 1 2009, 06:33 AM

Post #2

 

 

Advanced Member

 

 

Group: Members

Posts: 184

Joined: 12-August 08

Member No.: 3408

 

 

 

Hi, browneyesmom:

 

This is a tough one, for sure. FYI, you may already have seen this, but this very site (ACN / Latitudes) has some great articles about tics, OCD, autoimmunity, and PANDAS. You can check it out here:

 

http://www.latitudes.org/anxiety_ocd.htm

 

In particular, this article really stood out to me:

 

http://www.latitudes.org/articles/vojdani.pdf

 

When we first started struggling with our son's illness and inability to attend school, he was diagnosed with acute rheumatic fever with Sydenham's chorea rather than PANDAS. We spent much of our online time on an SC forum back then. One SC sufferer (wenwill, who also happened to be in the healthcare field) posted a really great series of posts about SC kids and school. We printed it off and gave it to our school administrators, and it seemed to help them understand some of the issues. You might consider giving this to them and explaining that PANDAS is basically "atypical Sydenham's"; it's got some great info. Here's the link:

 

http://www.wemove.org/cgi-bin/ultimatebb.c...opic/13/59.html

 

Hope that helps. I haven't come across a good "peer-reviewed article" that covers the full, nightmarish spectrum of symptoms these PANDAS kids suffer. Wish I had!

 

 

 

michele

Mar 1 2009, 07:43 AM

Post #3

 

 

Advanced Member

 

 

Group: Members

Posts: 943

Joined: 4-January 07

From: n. canton, ohio

Member No.: 2172

 

 

 

I have been struggling with this same issues for two years with the school. They don't get it and don't see it there. In my opinion they should be thankful he is so good there and not melting down. However we all know kids with behavior issues at school get more attention from the school staff. Either way they would think it was a parenting/discipline issue. I brought in many articles, some on tourettes from TSA because they have some great ones on school issues. However the one the school seemed to get the most from school nurse. It was on PANDAS in schools. The teacher said she would pass it on to all those who work with him. I don't know that it made a huge difference in her attitude though because she thinks he can just stop doing verbal tics at home. We all know that with tics they can hold them in for so long but eventually they have to let them out. I think that movie on Hallmark was good about the teacher Brad Cohen who had TS.

 

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

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

http://corporate.hallmark.com/Current-News...nt-of-the-Class

 

QUOTE(Worried Dad @ Mar 1 2009, 09:33 AM)

Hi, browneyesmom:

 

This is a tough one, for sure. FYI, you may already have seen this, but this very site (ACN / Latitudes) has some great articles about tics, OCD, autoimmunity, and PANDAS. You can check it out here:

 

http://www.latitudes.org/anxiety_ocd.htm

 

In particular, this article really stood out to me:

 

http://www.latitudes.org/articles/vojdani.pdf

 

When we first started struggling with our son's illness and inability to attend school, he was diagnosed with acute rheumatic fever with Sydenham's chorea rather than PANDAS. We spent much of our online time on an SC forum back then. One SC sufferer (wenwill, who also happened to be in the healthcare field) posted a really great series of posts about SC kids and school. We printed it off and gave it to our school administrators, and it seemed to help them understand some of the issues. You might consider giving this to them and explaining that PANDAS is basically "atypical Sydenham's"; it's got some great info. Here's the link:

 

http://www.wemove.org/cgi-bin/ultimatebb.c...opic/13/59.html

 

Hope that helps. I haven't come across a good "peer-reviewed article" that covers the full, nightmarish spectrum of symptoms these PANDAS kids suffer. Wish I had!

 

 

 

 

Posts in this topic

browneyesmom Need to help school understand PANDAS Mar 1 2009, 05:13 AM

Worried Dad Hi, browneyesmom: This is a tough one, for sure. ... Mar 1 2009, 06:33 AM

michele I have been struggling with this same issues for t... Mar 1 2009, 07:43 AM

browneyesmom I agree with EAMom that I wasn't so crazy abou... Mar 1 2009, 05:25 PM

browneyesmom I agree with EAMom that I wasn't so crazy abou... Mar 1 2009, 05:32 PM

browneyesmom Still reviewing... never did get the homework comp... Mar 1 2009, 05:22 PM

amy s you could pass along this info... http://www.k12a... Mar 1 2009, 07:21 AM

EAMom I did have an issue with this part of the k-12 web... Mar 1 2009, 08:34 AM

browneyesmom I have requested that our pediatrician write a let... Mar 1 2009, 09:15 AM

browneyesmom Thanks for all your suggestions and input!... Mar 1 2009, 10:07 AM

michele I am trying to meet with an educational consultant... Mar 2 2009, 10:53 AM

browneyesmom Thank you!! I will check out Wright's... Mar 2 2009, 03:02 PM

 

« Next Oldest · PANDAS · Next Newest »

 

 

 

1 User(s) are reading this topic (0 Guests and 0 Anonymous Users)

1 Members: momtocole1

 

 

 

 

 

 

Lo-Fi Version 0.2969 sec -- 11 queries GZIP Enabled

Time is now: 1st November 2009 - 11:01 PM

Powered By IP.Board 2.2.1 © 2009 IPS, Inc.

[faith]

judy,

to post a link:

when you want to just post the link instead of the whole text, when you bring up the file you want to post, just point with the mouse (the arrow) on the address bar up on top, and left click COPY just the same way, and then go to wher you want to paste it and position your cursor bar (that line that indicates where you start typing) and then left click and PASTE then the www. link should post there. practice a couple of times.

 

hth

faith

[T_Mom]

Judy--thanks so much for posting those, just like you did! I loved being able to scroll down and read the text portions you had chosen to share with us-- I remember those posts all too well, as my d was in a heck of a time then too--and school meetings were really awful.

They just did not understand that tardiness was no longer a concern...nor an option on many mornings...yikes!

[faith]

sorry, she mentioned she wanted to post the link but didn't know how.