[ShaesMom]

School is starting this week and I was wondering if anyone has found any really good articles on PANDAS and/or Separation Anxiety that they are going to share with the teachers and nurses at the school. IMO they do not need all the medical jargon-just real life examples and simple explanations of what to expect.

Last year I felt like no one understood anything about what was happening with Shae. I truly believe they thought I was in denial about my children having some major behavioral issues especially with her severe separation anxiety.

Anyone have anything they would like to share....

Sam

[EAMom]

Hi Sam,
have you seen this one?
http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

[michele]

I agree with the school nurse artice. The school gets it because it is written by a school employee. Also Leslie Packers articles are good. Some are even on PANDAS. http://www.schoolbeh...nditions_ts.htm

EAMom, on Aug 17 2009, 02:21 PM, said:

Hi Sam,
have you seen this one?
http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

[ShaesMom]

EAMom-Yes, I like that article. I gave it to the school last year when we first suspected Pandas. Not sure how much good it did though.

Michele--Tic/tourettes articles look great. My dd has not experienced this particular symptom yet. Hopefully they will come in handy for some other Moms.

Here is the article on Separation Anxiety that I use. I like that it lists the symptoms, do's & don'ts, & mentions Pandas.

http://www.schoolbehavior.com/conditions_a...yseparation.htm

[Vickie]

Do you have a psychologist on board? Mine offered to aid me in getting PANDAS added into an IEP under OHI. She is going to help provide info to the school.I will approach the subject about the OHI addition once school starts. He doesn't need services for it, but she wants it in there to protect him. Last year, I was just very open about the whole thing. This year, he is in kindergarten and I plan on doing the same thing. I tend to explainit a comparison to an allergic reaction to strep.I plan on explaining what PANDAS is before school beings.

[familyof4]

I also use the School Nurse News Article. I feel it is very important to write a letter to the teachers and any other staff that will have contact with my child about his health issues (he has others besides PANDAS) and meet with them as a team before school starts. That way we are not only working together for his best interests but I have provided them something concrete in writing. I find I get a much better response when the school has received written notification. Here are some of the things I put in the letter:


Teachers and Staff,

Our son, Alex, will be attending first grade classes at X Elementary in fall of 2009. Alex has several medical conditions that you need to be aware of.

Alex has PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). When exposed to strep bacteria, Alex can develop sudden onset of motor tics, anxiety, obsessions/compulsions and ADHD behaviors. The behaviors we have seen to this point are a rapid eye blink, sniffle, frequent trips to the bathroom, inability to stay still and the need to call out. He has very little control over these behaviors and therefore asking him to stop is ineffective. Please contact me immediately if he experiences a drastic behavior change in the classroom.

We are available at all times if questions should arise. Please let us know if something we are doing is not working out, causing him to be excluded, or causing problems within his peer group.

We appreciate all of the efforts that are being made on Alex’s behalf and look forward to working with you to make Alex’s first grade experience as normal and safe as possible.

[judy1270]

ShaesMom, on Aug 17 2009, 11:48 AM, said:

School is starting this week and I was wondering if anyone has found any really good articles on PANDAS and/or Separation Anxiety that they are going to share with the teachers and nurses at the school. IMO they do not need all the medical jargon-just real life examples and simple explanations of what to expect.

Last year I felt like no one understood anything about what was happening with Shae. I truly believe they thought I was in denial about my children having some major behavioral issues especially with her severe separation anxiety.

Anyone have anything they would like to share....

Sam

I know how you feel! They look at you like you have lost your mind.

[acdrobert]

Physicians affiliated with Brown University have developed a
blood test that searches for susceptibility to post-strep rheumatic
fever. It is expected that the test will also pin-point children who are
genetically predisposed to developing the repeated behaviors, movements,
and vocalizations associated with strep-related PANDAS

I copied this from the School Nurse Article. This is the first I have heard of this study. Has anyone done this ? My child is adopted so being able to determine if he is genetically predisposed to PANDAS may hel my Ped and Neuro Peds to actually believe in PANDAS.

ShaesMom, on Aug 17 2009, 12:48 PM, said:

School is starting this week and I was wondering if anyone has found any really good articles on PANDAS and/or Separation Anxiety that they are going to share with the teachers and nurses at the school. IMO they do not need all the medical jargon-just real life examples and simple explanations of what to expect.

Last year I felt like no one understood anything about what was happening with Shae. I truly believe they thought I was in denial about my children having some major behavioral issues especially with her severe separation anxiety.

Anyone have anything they would like to share....

Sam

[T.Mom]

[quote name='acdrobert' date='Aug 18 2009, 04:41 PM' post='36397']
Physicians affiliated with Brown University have developed a
blood test that searches for susceptibility to post-strep rheumatic
fever. It is expected that the test will also pin-point children who are
genetically predisposed to developing the repeated behaviors, movements,
and vocalizations associated with strep-related PANDAS

I copied this from the School Nurse Article. This is the first I have heard of this study. Has anyone done this ? My child is adopted so being able to determine if he is genetically predisposed to PANDAS may hel my Ped and Neuro Peds to actually believe in PANDAS.






That is fascinating! Who are they and what are they doing now?
...If you find out anything please let us all know--

[Buster]

Hi folks,

The original study was on the D8/17 antibody discovered back in 2001. See http://www.journals.elsevierhealth.com/per...003237/abstract

Swedo disclosed in a recent conference on Autism, that the cell line that created the D8/17 antibody died and so the antibody is no longer available. I can't seem to find anyone using D8/17 recently -- so seems to be the case. Sigh.

Buster

[dut]

We did a PANDAS/OCD panel with Neuroimmunology Labs in Nov 2008 and they did include the D8/D17 marker as part of the panel but having seen the same Swedo talk, I wondered about the validity of the results....