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My daughters PANS or PANDAS is back, as predicted, as this is the third year in a row it's reared it's ugly head in March. She's had an episode in March at age 3,4 and now 5.

Comes on very sudden, literally overnight, suddenly fearful of things she's never been scared of before, has extreme separation anxiety, asks repetitive reassurance questions, only talks about one subject, etc. As she gets older it looks a little different but I can immediately tell the change in her.

When she was 3 it lasted from March to and slowly faded by July. Last year from March and 100% better by June.

 

So, I expect about 6 weeks of the worst before it seems to get better. My question is.. how do I keep her in school? Or do I take her out? She can't stay in the classroom she cries the whole time. Therapy doesn't do much. The only thing that "cures" it is time and then when the episode is done she is completely 100% back to her normal self again.

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Sounds like something allergy triggered to me. My son went through the same thing when the pollens from trees and ragweeds were in high gear, generally in April/May and Aug/Sept. Last year required steroid tapers to bring him out of it.

 

When she was 3 it was strep, when she was 4 it was Mycoplasma pneumonia, and I have to wait until Monday to figure out what it is this time.

 

But you are right, it sounds like some allergy related? But could allergies cause something this severe? Her nuerologist, Dr. Alarcio, said it wasn't anything to do with allergies. But the fact that it is every March like clockwork is just the strangest thing.

 

But her symptoms are completely debilitating. When she was 3 she would repeat the same question over and over as if she had Tourrettes or something? Every year it completely turns the whole family upside down for months. She is a completely different child.

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Jen- keep her in school!! It is not a big deal now at 5- but before you know it she will be 7, 9, 12! Lots of our pandas kids have ocd surrounding school, and it can be very, very tough. The older they get, the more important it is socially, academically and for self-esteem reasons that they have regular attendance. Now is the time, when school is really not at important, that she learn that she can overcome the ocd (or whatever it is) that is making her not go. If you set up the precedence and expectation that when things get too hard, she should take time off- that can be dangerous. (take it from a mom whose pandas dd missed almost half of fifth grade- learned this the hard way).

 

First- this is not easy- and her attendance will not be perfect- it will be a work in progress. Here are some suggestions:

 

1. Treat the pandas- steroids, antibiotics, advil- whatever- see a pandas doc. YES! Allergies trigger massive pandas symptoms, I think all pandas docs are aware of this.

 

2. If at all possible, get a decent therapist to work with you. Even if your daughter won't respond to them, they can help you strategize, write notes and requests to teachers, and give you the support you need to get through this.

 

3. Simplify her morning routine- only require a few things (1. get dressed, 2. eat something, 3. use the bathroom). Yes- we eliminated brushing hair and teeth (did this at bedtime) during the worst times. Lay out the outfit the night before. Get her up early enough so she has way more time than needed.

 

4. At my younger dd's worst time in K, we had a prize box. She would pick a prize from it right as we were heading into school! This may help. It was not necessarily a great motivator- but it was a nice reward that made her feel good when she did well.

 

5. My dd at K had severe separation anxiety. Parting with me was very, very hard. Our psych came up with an idea (at first I thought it would no way work) for me, on days when it looked like she might not make it- I offered to come "check" on her during the day, and take her home no questions asked. For us this worked, because she generally liked school. I would go to check on her at a fun time- recess- and almost every time she stayed. I don't know if this will work for your situation, but this is where a pscyh might be really helpful.

 

HANG IN THERE!!!!

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Jen- keep her in school!! It is not a big deal now at 5- but before you know it she will be 7, 9, 12! Lots of our pandas kids have ocd surrounding school, and it can be very, very tough. The older they get, the more important it is socially, academically and for self-esteem reasons that they have regular attendance. Now is the time, when school is really not at important, that she learn that she can overcome the ocd (or whatever it is) that is making her not go. If you set up the precedence and expectation that when things get too hard, she should take time off- that can be dangerous. (take it from a mom whose pandas dd missed almost half of fifth grade- learned this the hard way).

 

First- this is not easy- and her attendance will not be perfect- it will be a work in progress. Here are some suggestions:

 

1. Treat the pandas- steroids, antibiotics, advil- whatever- see a pandas doc. YES! Allergies trigger massive pandas symptoms, I think all pandas docs are aware of this.

 

2. If at all possible, get a decent therapist to work with you. Even if your daughter won't respond to them, they can help you strategize, write notes and requests to teachers, and give you the support you need to get through this.

 

3. Simplify her morning routine- only require a few things (1. get dressed, 2. eat something, 3. use the bathroom). Yes- we eliminated brushing hair and teeth (did this at bedtime) during the worst times. Lay out the outfit the night before. Get her up early enough so she has way more time than needed.

 

4. At my younger dd's worst time in K, we had a prize box. She would pick a prize from it right as we were heading into school! This may help. It was not necessarily a great motivator- but it was a nice reward that made her feel good when she did well.

 

5. My dd at K had severe separation anxiety. Parting with me was very, very hard. Our psych came up with an idea (at first I thought it would no way work) for me, on days when it looked like she might not make it- I offered to come "check" on her during the day, and take her home no questions asked. For us this worked, because she generally liked school. I would go to check on her at a fun time- recess- and almost every time she stayed. I don't know if this will work for your situation, but this is where a pscyh might be really helpful.

 

HANG IN THERE!!!!

 

Thank you for all your advice. Right now getting her to school isn't the problem but something will trigger her to start crying while she is at school and the teacher can't calm her down. So she ends up sitting in the nursing station wanting me. But she physically shakes and makes herself very sick. When she was younger something would trigger it, for example, the water fountain. One of her irrational fears was that the water was going to take her skin off.

When she is not having a pandas episode (march through june) she has no problem going to school.. infact, she doesn't seem to remember what goes on during her pandas stuff once it's cleared up. It's really like jeckle and hyde!

 

But the fact that it starts in March (when it gets hot here.. we are in phoenix) and is gone by June.. really makes me feel that there is an environmental factor involved. Could some pollin from a desert tree be triggering all this? Is that even possible? She doesn't outwardly show allergy symptoms though but she never has symptoms of strep or myco p. either. One thing we have never tried is steroids/allergy medicine.. Now I want to talk to her pediatrician about steroids before we go on the antibiotic route again.

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