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onset in my daughter


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Several months ago I posted about seeing signs of PANDAS/PANS creeping up in my daughter(9, then now 10)--I think it was mostly OCD behaviors that I was picking up on. This scared me because my 14 yo ds is PANS and I was afraid it was beginning in her.

 

Then about a month ago some friends of her siblings were staying over and they all stayed up late and watched Sharknado. Around 2am she came in and said they had watched it and it was really bloody and she didn't feel good and wanted to sleep with us. She hasn't been back in her bed since. For the next few weeks she had tummy aches throughout the day, periods of weakness. I took her to the doctor. She ran blood work with nothing remarkable showing. The big tummy aches have gone away but every night when it is time for bed she says her tummy hurts and wants me to lay with her on a mattress in our room. And as of the past few nights she is totally in our bed. She never had problems sleeping by herself before. Initially I thought the movie traumatized her, but honestly as the 3rd child, she has probably seen similar movies before. (never saw sharknado so don't know how bad it was)

 

I've noticed this past month that her pupils are huge! We went on a cruise this weekend and in all the cruise photos she had the scariest look on her face because of how big they were. So I'm thinking this is some mini-onset of Pandas/pans. No increase in ocd thankfully. But now I'm waiting for that huge onset to occur.

 

My son's appears to by lyme related. (Positive IGenex) We are going to DC Sunday to see a specialist there as treatments he has had so far here has not seemed to help his PANS. I don't even know where to begin with my daughter. I haven't kept our ped up to date on my son because she doesn't really believe in pans. And she has referred my daughter to a GI. I feel like I should at least explore that route, perhaps she does have an ulcer or something. I thought that I would talk to the DC doctor and see what blood work he recommends I get for her and see if our local LLMD will request it.

 

Also the last few nights her leg/knee has been aching. She's had leg aches before so this is nothing totally remarkable, but I'm just trying to fit the pieces together. What she is exhibiting is an onset of separation anxiety, large pupils, tummy aches, leg/knee pain. I hope they are not related to Pans, but if so I'd like to head it off before it gets worse.

 

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My suggestion is that if your son is positive for lyme (have you tested for coinfections?), that your daughter be tested as well.

 

DD13's leg pain (actually the shins and the long bones in her arms as well) and stomach pain (often severe enough to cause her to sit down) and PANS symptoms were caused by a bartonella hensalae infection. Pain in the large muscles of the legs can be indicative of babesia infection.

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Also on leg pain...my Pandas son had chronic intermittent leg/knee pain. After he had his first BIG Pandas flare, and we treated with abx for 6 weeks, his 2 year long bout of knee/leg pain all went away 100% and never returned. Keep in mind, the leg pain all occurred before Pandas.

 

Some theorize that Strep hides in the joints. That it is there that the Strep mutates and is able to form that protein layer around it's own cell that is similar to the heart and basil ganglia. Hence, the road to Pandas.

 

My son's strep titers were never remarkable either...yet he has had several bouts of strep in his young life before Pandas.

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Sharknado sounds most unpleasant from the wikipedia description. If a kiddo with OCD latches onto the visuals in that type of movie, then remunerates on those, I can see why they would want to sleep with their parents for long periods of time. Kiddo had horrid nightmares and the worst she had seen at that time was Scooby Doo. You may need to watch the movie by yourself and see if you can talk through the worst of her worries with her.

 

My kiddos ASO or Anti-Dnase have never been elevated, even 5-6 weeks into a 60 day strep infection. BUT, her immuno function was determined to be compromised, so she would not respond in the same manner as a non-compromised kiddo. So, these tests are not the end of the subject of PANDAS if they are low.

 

My kiddo has every symptom you mention, plus a few more in heightened flares. My siggie lists everything I am aware of that she has.

 

Have you tried an antibiotic trial with her yet?

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This is an interesting topic to me too. I have a middle schooler with diagnosed PANDAS and a younger son I sort of suspect has "pre-PANDAS." He has some separation anxiety, difficulty falling asleep, urinary frequency/incontinence, large pupils, and he is a very particular child. He also used to love to draw and now he doesn't. But basically he's a sweet kid, he has friends, his teachers like him, he's fine.

 

My pediatrician pointed out that none of these symptoms are really all that unusual in a five-year old. Which is clearly true. We did testing anyway and his strep titers were totally normal. So I'm at a loss of where to go from here. Do I take a kid who is basically doing fine to a specialist four hours away for extensive and expensive testing, over my husband's objections?

 

For now, I've been giving him fish oil, which seems to have helped with the incontinence, interestingly enough.

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