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Letter needed for son's class on PANDAS


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Our son has just started back to school, 1/2 days at first after being out and homeschooled for a year due to his PANDAS. We asked the school to put a letter out to his classroom asking that the school (and then us) be notified in case any of the children have strep. Before we could give them a letter they sent this out: it was on page two of the teachers three page monthly report to families.

 

If your child has any strep-related illness, please be sure to inform the office and e-mail me as well.

 

So, HELP- does anyone have a compelling letter that they've sent out, or they know of that explains the urgency of letting the teacher and school know if your child has PANDAS?

 

Thank you in advance!

 

Our thought is to put the letter on bright pink paper and print off for the teacher to send home with all the students.

 

Julie

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We homeschool and I sent a message to our group requesting members inform us of potential for illness exposure-- esp strep. We've known many of the families in our homeschool group since ds was in the sling and our group is smaller and more familiar to us than a general school community would be to you, but I'll paste a copy of the email message I sent to the group below in case some of the generalized language/description is helpful to you...

 

TH

 

Message:

 

Hi all,

 

I'm writing to request a favor from all group name members. In the past year, we learned that both of our kids have an autoimmune condition and we just learned this week that ds's name also has an underlying immune deficiency. Because of the autoimmune condition, when our kids get sick, or sometimes even exposed to trigger antigens, their immune systems will launch an attack on their own bodies, particularly focused in one region of the brain. An immune response to any infection-- viral or bacterial-- can kickoff this response, but strep, flu, and URIs are among the most severe.

 

We would appreciate it if the members of group name would send a quick email with a heads up in advance of group events if anyone in their household is or has recently been ill, especially if anyone has an active or recent strep or flu illness or exposure, even if the sick family member will not be attending the event or is already taking antibiotics. This will help us make informed decisions about our attendance and participation and allow us to minimize their exposure at group events we attend--at least to the extent possible without confining them to our house all year (we like our sanity!). And if you see us at an event and realize there's a possibility of exposure we may not be aware of, please just whisper in my ear so I can take appropriate measures to protect the kids. If you're not comfortable sharing personal medical info about your family members I completely understand--but maybe you could just tell me it's not a good day for our kids to wrestle or hold hands? That'd be all I need to know.

 

Thanks a million everyone!

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thenmama - what an excellent letter :) you really manage to get across the important stuff without coming over as a crazy germaphobe. I like and (although it wasn't me that asked) will keep a copy for future use.. thanks for that :)

Edited by dut
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thenmama thank you so much for a copy of your letter! Very nice explanation. I've even thought of calling the parents individually as the school has been such a pain- but the thought of making 25 phone calls has not put me in a good mood. And your letter is perfect! Explains it nicely without being a germ-a-phob or having people think that their child can some how "catch" PANDAS.

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Here is the letter that I e-mail to our teachers each year. It could be tailored and changed a bit to go home to parents:

 

 

Before the year starts, I wanted to take a moment to send some information out about an autoimmune disorder which Lillian has. This disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). When a child has PANDAS, an autoimmune reaction occurs as a result of a strep infection. Instead of the child's antibodies attacking the strep bacteria, they breach the basal brain barrier and attack the basal ganglia causing swelling of the brain. The reaction varies child to child but may cause tics, OCD, separation anxiety, sensory issues, ODD (oppositional defiance disorder), change in handwriting and math skills, ADHD, and more. Also, if you notice a change in her behavior at school, please let me know.

 

When Lillian was affected by PANDAS in January of 2009, her symptoms were OCD, which caused extreme anxiety, and separation anxiety. These symptoms appeared literally overnight. She went to bed one evening with no symptoms and awoke the next morning a different child, consumed with fears. After treatment with antibiotics and time to heal, she is now symptom free. She will begin taking azithromycin during the school year beginning Monday three times a week as a prophylactic antibiotic to prevent strep.

 

I would ask that you inform me if anyone in your class or the 5th grade level calls in sick with strep so that we can take preventative measures and also watch her more closely for symptoms. Strep is the trigger for Lillian and needs to be avoided at all costs. PANDAS has been referred to as RF (Rheumatic Fever) of the brain. Lillian does not have typical symptoms of strep -- no sore throat, no fever. If she is directly exposed to strep, we need to increase her prophylactic antibiotic for several days. I ask, if you should ever be diagnosed with strep during the school year, that you inform me as well.

 

I have personally been battling strep off and on all summer myself so Lillian has shown some mild OCD symptoms. She is starting Augmentin full strength today which should prevent her from having a major reaction and will hopefully make all symptoms disappear before Monday. At this time, my ENT and I are trying to decide if tonsillectomy is my only option since I am allergic to all penicillin drugs. Our major goal is to get rid of all strep in our household.

 

If you have any questions regarding this condition, please feel free to ask as it has become my mission to raise public awareness so that children with PANDAS are not misdiagnosed and put on unnecessary psychiatric medications when a simple antibiotic may be all that is necessary to provide healing. Lillian is like any other child. She loves excelling in her work, spending time with her friends, and taking dance lessons.

 

Here is a link to the WFAA story we participated in to raise awareness in May of 2010. This story includes a basic description of PANDAS:

 

http://www.wfaa.com/news/local/A-side-effect-of-strep-93004404.html

 

Here is a link to a fact sheet on PANDAS:

 

http://www.pandasresourcenetwork.org/about-pandas/symptoms.html

 

If you come into contact with any other PANDAS families, please feel free to share my e-mail address with them as I have started a PANDAS parent support group that meets once a month.

 

Thank you so much for investing your time and energy in our children! We truly appreciate your efforts with them!

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