The word is really getting out there!

[airial95]

My daughter started Kindergarten this year. At the beginning of the year, I asked the teacher to schedule a meeting with the principal and herself after things got settled in to discuss strep notification in the classroom to protect my PANDAS son (who is in special ed pre-K at another school).

 

The meeting was scheduled for this week, but in the meantime, the doctor dx our daughter with PANDAS as well. (I suspected for some time, but now confirmed). So the subject of the meeting shifted from simple notification to a more in depth "what is PANDAS" and what will be needed for my daughter. She seems to be a mild case so far - this infection being her worst episode, and compared to my son she's still Mother Theresa! I wasn't sure if we really needed to pursue an IEP or 504 for her yet (we have an IEP for my son), but wanted to at least get the school's input and get the conversations started. In preparation, I sent in a ton of information for them to read ahead of time.

 

They invited the school nurse to sit in. They all looked at me blankly to begin, and that’s when I discovered her teacher put all that information in her file, and didn’t pass it along to the others in the room. I thought – great, this is going to go well.

 

As I started to get into it, her teacher started asking several questions that made me feel better, since it was obvious by her questions she had read the materials I had sent her – she just didn’t pass them along.

 

The principal was very interested, asking all sorts of questions, you could sort of see the wheels start turning as she started thinking back of all the kids she had over the years that now she was wondering about.

 

At this point, the nurse hadn’t said one word. I asked for strep notification in the classroom, and even offered to draft a letter to go out to the parents, I asked for increased communication with the teacher, anything unusual, err on the side of caution and tell us. I pointed out diminished writing and math skills during episodes, and also asked for no sharing of supplies (to the extent possible), frequent potty breaks, frequent hand washing, and use of hand sanitizer, frequent cleaning of common areas/desks, as well as using a water bottle instead of fountains.

 

They agreed to all of these requests with gusto, no problems, and started suggesting several other things we could also do. I mentioned that at this point our focus is on preventing infection, and notification of when things may be off. We may need to re-evaluate once we get a better handle on what her common symptoms are.

 

I showed them my “crazy mom binder” of tracking data that I keep for my son. I mentioned we will be starting one for her, and I would like the teacher to fill out the log every day if she could (our biggest battle with our son’s teacher). The principals eyes lit up when she saw all the data, and she laughed that we couldn’t have had a better teacher, because she loves charts/graphs and data. The teacher was actually EXCITED about the log, and asked how soon I could have it to her. She also started mentioning things she noticed about McKinley that happened for about 2 weeks several weeks ago that all now seemed to make sense (that was right when she got strep, but before she was on abx.)

The principal suggested extending the “strep notification” request to the adjacent classroom since they share bathrooms. I was AMAZED at the cooperation.

 

At this point, the school nurse still hadn’t said a word…that’s when I noticed the PANDAS Wikipedia page in front of her. I haven’t been on there in quite some time, so all I could think is if it was filled with “PANDAS isn’t real” garbage.

 

I was shocked to hear the nurse FINALLY chime in saying that she is familiar with PANDAS, and actually has another PANDAS child at one of her other schools (she’s the rotating nurse for 3 charter schools) and she already started the paperwork for my daughter to have unlimited bathroom privileges, and would add strep notification – and whipped out a form already started with several of our requests already pre-written!

 

This is the second school nurse we’ve dealt with that had a previous PANDAS patient…so all I can say is the word’s getting out and hopefully it’s getting easier!!!

 

 

With that being said…does anyone have a sample letter asking parents to notify the teacher in cases of strep? I thought I remember someone having one that was similar to a peanut allergy or something…

[Mary M]

Wow-so nice to see the system beginning to work for our children!

[Dedee]

Thank you so much for sharing this information. It's great that you are so organized in your meetings. If you end up with a copy of a letter I would love it if you would share it. Thanks for being such a professional spokes person for PANDAS kids every where.

 

Dedee

[browneyesmom]

Great news! I'm very interested in this (and if someone has a sample letter) as my daughter is in middle school now and changing classes constantly. This is after her second and by far, most severe exacerbation. So far, I am communicating with the nurse and asking if she is seeing strep. It seems extremely complex to have parents notify teachers ... I guess we'd have to do it for the entire 7th grade.

[mom md]

Dear Parents-

 

We are all being proactive regarding concerns about the flu this season, but I also wanted to bring to your attention another health concern as we enter the fall. There is a student in your classroom who, several years ago, developed a rare, severe rheumatic fever complication from a strep throat infection. The child has been treated but is still susceptible to having a reoccurrence if exposed to the strep-A bacteria again.

 

In an effort to protect this child and others in your class, if your child is diagnosed with strep, please inform Meghan or Linda immediately. Per school policy, if your child is diagnosed with strep throat, they must complete a full 24 hours of the antibiotic and be fever free without fever reducing medicine before returning to school. If you have questions regarding the symptoms of strep, please contact your pediatrician.

 

Thank you for your cooperation with this matter.

 

From,

The CCDS Lower School Nurses

 

 

 

This is the letter we send out every year to both my sons classrooms.