Need to help school understand PANDAS

[browneyesmom]

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!!

[Worried_Dad]

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!

[amy s]

you could pass along this info... http://www.k12academics.com/pandas.htm I just found that page myself recently. That particular page doesn't have tons of info on it but educators might like it especially since it is geared toward them.

 

Also, as posted the other day in response to a post from michelle, this site http://www.tourettesyndrome.net/education.htm has some wonderful information for educators and about navigating the IEP process, parent rights, homework issues, separation anxiety issues, rages, OCD in the classroom and a lot more.

[michele]

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

 

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!

[EAMom]

I did have an issue with this part of the k-12 website: http://www.k12academics.com/pandas_controversy.htm

 

I don't know if it helps matters, but PANDAS is recognized as an illness under the "other health impaired" category for IEP.

 

Do you have a pediatrician or other doctor (psychiatrist?) that would be willing to write a note to get your dd out of some of her homework/classwork/lateness/abscences? Also, our pediatric rheumatologist called PANDAS "rheumatic fever of the brain"...maybe explaining it that way will help your school/teachers understand how your dd can be affected in this unique way (since obviously most people who get strep don't get rheumatic fever).

[browneyesmom]

I have requested that our pediatrician write a letter for us to utilize at her school, which I'm sure he will be happy to do for us.

 

Also, I mentioned to my daughter that she can talk with the guidance counselor at her school (she has had an ongoing relationship with her for a while) about what she is experiencing. I do think that if the guidance counselor hears first-hand from my daughter herself that she is having enuresis, visual/auditory hallucinations, extreme emotional swings that frighten her, fear of separating from mommy, reluctance to attend school, etc... that she may be more willing to advocate for her within the school setting. However, I do not want to pressure my daughter, so it has to be up to her if she is comfortable sharing or not. Unfortunately, the school nurse who has been there all along just broke her ankle and is out for 4 weeks, so she is not there right now for support. I happen to be subbing this Friday and first couple of days of next week, so I will be in the clinic those days myself. She will just be finishing the antibiotics then, and hopefully, doing a bit better at that point.

 

I printed the School Nurse article as that one really seems to fit our situation very well. I'm reviewing the others also. It's certainly a tough situation as they do not see nearly as much as what I see at home. There is a little bit there, but for the most part, she does all she can to keep a lid on it or simply keep quiet about it. The disorganization issues are the ones most obvious, I think, to her homeroom teacher. She's seen that from the beginning of the year and at one point (before I knew about PANDAS), my dd was being evaluated for ADD due to that her trouble with focusing, following directions, remembering instructions, keeping her work organized.

[browneyesmom]

Thanks for all your suggestions and input!! They really helped get me going on thinking about what I need to discuss in there and what is really pertinent to her situation. I've been researching more and wanted to add some that I found and plan to use at her school. I wanted to post these in case anyone else might benefit from them:

• http://www.worrywisekids.org/anxiety/pandas.html
  
• http://intramural.nimh.nih.gov/pdn/web.htm
  
• http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf
  

I plan to summarize the most relevant points in a word doc as well as provide these articles as backup to my document and discussion. Both my ex as well as my husband said that they will attend the meeting with me. Although my ex has not seen much of these behaviors since she lives with me, I think he is starting to come around, realizing there is something not quite right. My husband has definitely seen what happens here and will be able to verify the changes at home.

 

I'll also be faxing our pediatrician sometime today to let him know how things have been worsening this week (as well as update him on school issues) as he has not yet been updated on that and I will request that letter from him again with my fax so he has current information when he writes it and understands the school issues.

 

With those things in place, I will feel a little better equipped to go into a meeting with school administrators & teachers.

 

Does anyone else have any other suggestions? I'm really new to all this and want to be certain I cover everything I can in this meeting so she gets as much support as possible. I'm not sure if we really need an official IEP or 504 at this point, but I would appreciate some leniency on the amount of homework, understanding of her condition and tardiness issues being related to the separation anxiety/PANDAS as well as some support at school (someone she can go to there (I'm thinking the school guidance counselor (with schoool nurse as backup person) as they already have an established relationship) to talk when she needs someone to listen and understand/re-direct in an appropriate way). Thanks again!!

[browneyesmom]

Still reviewing... never did get the homework completed; she's too overwhelmed by it at this point. This is so unlike her; usually I can get her right back on track and that is the key that they need to understand here. This is not typical; she is not well.

 

Oh yes, that middle article by Vojdani is fabulous. I think I will print that one also. Thanks tons!!!

 

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!

[browneyesmom]

I agree with EAMom that I wasn't so crazy about that one page that indicates controversy about PANDAS, but there are some other useful pages there that I might print and request that the teachers/guidance counselor use in practice with her. I liked the feeling thermometer and I think that will help with her separation anxiety; there was also a very good article there about separation anxiety. Thank you, thank you!!!!

 

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

 

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!

[browneyesmom]

I agree with EAMom that I wasn't so crazy about that one page that indicates controversy about PANDAS, but there are some other useful pages there that I might print and request that the teachers/guidance counselor use in practice with her. I liked the feeling thermometer and I think that will help with her separation anxiety; there was also a very good article there about separation anxiety. Thank you, thank you!!!!

 

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

 

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]

I am trying to meet with an educational consultant. They sometimes work with educational psychologists. In our last meeting the school and psychologists wouldn't even let me discuss my concerns. They all agreed he was average and showed no signs for them of disibilities. I came armed with articles and books and letters and test results. In the next one I will be more legally prepared. It is all about how you word things and catch them on not following the laws. Know the laws see wrights law. Be prepared to fight.

 

http://www.wrightslaw.com/

 

Thanks for all your suggestions and input!! They really helped get me going on thinking about what I need to discuss in there and what is really pertinent to her situation. I've been researching more and wanted to add some that I found and plan to use at her school. I wanted to post these in case anyone else might benefit from them:

• http://www.worrywisekids.org/anxiety/pandas.html
  
• http://intramural.nimh.nih.gov/pdn/web.htm
  
• http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf
  

I plan to summarize the most relevant points in a word doc as well as provide these articles as backup to my document and discussion. Both my ex as well as my husband said that they will attend the meeting with me. Although my ex has not seen much of these behaviors since she lives with me, I think he is starting to come around, realizing there is something not quite right. My husband has definitely seen what happens here and will be able to verify the changes at home.

 

I'll also be faxing our pediatrician sometime today to let him know how things have been worsening this week (as well as update him on school issues) as he has not yet been updated on that and I will request that letter from him again with my fax so he has current information when he writes it and understands the school issues.

 

With those things in place, I will feel a little better equipped to go into a meeting with school administrators & teachers.

 

Does anyone else have any other suggestions? I'm really new to all this and want to be certain I cover everything I can in this meeting so she gets as much support as possible. I'm not sure if we really need an official IEP or 504 at this point, but I would appreciate some leniency on the amount of homework, understanding of her condition and tardiness issues being related to the separation anxiety/PANDAS as well as some support at school (someone she can go to there (I'm thinking the school guidance counselor (with schoool nurse as backup person) as they already have an established relationship) to talk when she needs someone to listen and understand/re-direct in an appropriate way). Thanks again!!

[browneyesmom]

Thank you!! I will check out Wright's Law. I would rather be prepared and not need it, than not have what I need. Where does one find an educational consultant or psychologist?

 

I am trying to meet with an educational consultant. They sometimes work with educational psychologists. In our last meeting the school and psychologists wouldn't even let me discuss my concerns. They all agreed he was average and showed no signs for them of disibilities. I came armed with articles and books and letters and test results. In the next one I will be more legally prepared. It is all about how you word things and catch them on not following the laws. Know the laws see wrights law. Be prepared to fight.

 

http://www.wrightslaw.com/

 

Thanks for all your suggestions and input!! They really helped get me going on thinking about what I need to discuss in there and what is really pertinent to her situation. I've been researching more and wanted to add some that I found and plan to use at her school. I wanted to post these in case anyone else might benefit from them:

• http://www.worrywisekids.org/anxiety/pandas.html
  
• http://intramural.nimh.nih.gov/pdn/web.htm
  
• http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf
  

I plan to summarize the most relevant points in a word doc as well as provide these articles as backup to my document and discussion. Both my ex as well as my husband said that they will attend the meeting with me. Although my ex has not seen much of these behaviors since she lives with me, I think he is starting to come around, realizing there is something not quite right. My husband has definitely seen what happens here and will be able to verify the changes at home.

 

I'll also be faxing our pediatrician sometime today to let him know how things have been worsening this week (as well as update him on school issues) as he has not yet been updated on that and I will request that letter from him again with my fax so he has current information when he writes it and understands the school issues.

 

With those things in place, I will feel a little better equipped to go into a meeting with school administrators & teachers.

 

Does anyone else have any other suggestions? I'm really new to all this and want to be certain I cover everything I can in this meeting so she gets as much support as possible. I'm not sure if we really need an official IEP or 504 at this point, but I would appreciate some leniency on the amount of homework, understanding of her condition and tardiness issues being related to the separation anxiety/PANDAS as well as some support at school (someone she can go to there (I'm thinking the school guidance counselor (with schoool nurse as backup person) as they already have an established relationship) to talk when she needs someone to listen and understand/re-direct in an appropriate way). Thanks again!!