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^ awareness w/school nurses in talk soon


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I may have an opportunity soon to attend a meeting of school nurses (hopefully, this is only the beginning and there will be more) in which I will speak about PANDAS. School nurses are in a prime position to help recognize a child who may have this condition, advocate for them & educate parents as well as administration & faculty. It is my hope (and will be my suggestion) that they will take my information back to their respective schools and and raise awareness & advocacy there.

I'd like your input as to what you believe your children really need in the school settings. How could they better support our children... both in a practical sense and any other suggestions you may have. While I assume my time will be limited and I may not be able to address all issues, this one is near to my heart and I hope to have handouts prepared... hopefully in PowerPoint format that they can follow during my discussion, ask questions, then bring back to their schools.

Please share... thank you so much!!! :~))

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I'm not sure if you mean how school nurses might help our children "in the moment" of an exacerbation behavior, or if you're more after the whole strep exposure thing.

 

In our experience, we had no trouble being notified of strep cases when DS was in elementary school; a form letter would normally go out in his folder the same day that the school was notified by the afflicted child's parent. But once DS moved into junior high, the notices ceased being sent out; in 2.5 years of junior high, we've received only ONE written strep notification. The administration says they can only officially notify when they are notified, and parents of kids this age just tend to not report.

 

Once I made the school nurse aware of our DS's strep "sensitivity," however, she's been great about picking up the phone and calling me immediately when she becomes aware of a case of strep in the school, even if it is a teacher or staff member and not another kid. I'll be forever grateful for the "heads up" she provides of her own volition!

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I think the best role they can play is raising awareness and early detection. So many parents have never heard of Pandas. If nurses can play a role in making information available, that would be significant.

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Thank you both for responding and in answer to your question, Nancy, I'm after whatever we can do as school nurses to help support the needs of children with PANDAS and their parents in working with them... and this goes beyond the nurse's clinic to the entire school, in my opinion.

 

First and foremost, their focus will be on what they can do as clinicians (I work as a sub RN in our school system); however, they are also in a position to be able to educate those around them (admin, teachers, etc.) and start helping to turn the tide for our children in many areas at school... by advocating for what they need.

 

So... whatever experiences you folks have had (and I realize they are varied - that's the great thing about gathering the info here - a large collection of PANDAS parents), I want whatever you have experienced that went wrong and could be improved, that went well and was helpful, etc... all of it. I want to be well prepared for this opportunity to help other children.

 

Thanks again for any input... I know you are all busy caring for your children and have other demands... I really appreciate your input here and want to do what I can to raise awareness, educate and advocate for our children.

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... and I know we have all seen some really tough stuff... please do not feel badly about sharing your experiences. They need to know the truth about this condition so they can start to be in a position to help. Thanks again!! :)

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Hi Kara... I had some research articles from when I first spoke with her elementary school nearly 2 years ago, but I can't locate that binder. :( Yes, I'd be delighted to have any information you can provide as to what you put together. I'll PM you my email address...

 

Thanks very much!

Denise

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We had a bad experience with the nurse in our elementary school. The biggest difference she could have made was by simply having an open mind. When the school psychologist and nurse start your 504 meeting with "you know Pandas is controversial" you may as well go home right then. If nurses started from the position that it's a valid, recognized disease, others in the meeting might follow suit.

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dont have whole lot to add except being aware of early signs. The nurse may not be in the best position to recognize these, but they may be able to educate teachers. My dd's teacher sent home several notes regarding a decline in my daughter's handwriting. Her math skills were also rapidly deteriorating. This was a retrospective "ah ha" moment months later. If teachers have the knowledge, they may be able to ask parents pertinent questions and help direct them to seek medical attention. Many parents have never heard of PANDAS. While the handwriting and math deteriorated at school (something I wouldn't have seen without teachers input) Other things were surfacing at home that made me think something was going on. But these things weren't noticed by the teacher. My point is, the child has a better chance of getting caught early if someone at school can validate a change going on. May just give the parent that added confidence that they need to seek help. Thanks for doing this.

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I know you will do a great job presenting PANDAS as a valid problem. That will be a huge help.

 

We were lucky to have a parent as our "clinic aid" whose youngest child had PANDAS. It was a big help to know that she understood the serious nature of my son's problem.

 

When we updated his IEP this past fall we wrote in that he was not to go to the clinic when he felt ill - as that was where all the kids went when they became ill at school from strep! The clinic aid was completely supportive of this - she knew best how real (and scary) the risk of step exposure was in her own clinic. It was a small thing that made a big difference to us. Good luck with your presentation!

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If school nurses would send parent notifications that its strep season and include PANDAS symptoms for when to get your child checked for strep..

I know the very few notices I've had for strep in the schools only listed typical strep throat symptoms and I think it would help to educate parents, who may otherwise be sent directly to psychiatry.

 

Also, look closely at their SPED populations- some of those children are likely to be undx'd PANDAS.

Edited by peglem
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