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Still trying to figure this all out and not sure if what we're dealing with is definitely PANDAS but in the event that it is...

 

Do your children react to exposure only to the infections/viruses that prompted the PANDAS originally or to any range of illnesses? We have no evidence of strep in my daughter so I'm wondering what exactly I should worry about in terms of exposure as she starts back at school (and frankly even at home...I'm feeling a scratchy throat coming on and wonder if I shouldn't get a strep test!)

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In dd4's case, it looks like the original infection was strep that set symptoms off (confirmed with elevated aso titers that came back down to normal). That being said, we almost instantly see an increase in behavior & sensory issues if she is exposed to any type of virus/bacteria now. It's like she has turned into a bloodhound for illness - when we see an increase in behavior, we are sitting at 100% confirmation that someone she had spent time with closely within 24 hours has diagnosed with something (fever, ear infections, strep, impetigo, chicken pox, etc). It seems once her rogue antibodies turned on due to the original strep, those antibodies play havoc within her brain in response to any trigger, even though strep was the original set off.

 

Day care and schools (she has an older brother who is going into gr.2 - non-pandas) are now very scary places for us, and we are constantly balancing the "risk" of her going. Thankfully, she is not in Kindergarten yet, so we have some time before we cross that bridge... To make the decision, we usually look at how she has been doing overall - we find that too many exposures over a short period of time and she needs some "bubble time" (that is our phrase for staying in the house and limiting exposure as much as possible). I work in schools myself, so I often change clothes/wash hands before entering the house - not sure if it actually helps, but it helps me feel like I'm doing something. We both need to work, so we often try to balance days off between our two employers.

 

I find myself worried about the fall - we are still recovering from the first major flare in the spring, and have seen mini-flares that haven't yet stopped - all these from other things besides strep. I'm worried about what a strep infection will do...

 

Sending you warm wishes...

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In dd4's case, it looks like the original infection was strep that set symptoms off (confirmed with elevated aso titers that came back down to normal). That being said, we almost instantly see an increase in behavior & sensory issues if she is exposed to any type of virus/bacteria now. It's like she has turned into a bloodhound for illness - when we see an increase in behavior, we are sitting at 100% confirmation that someone she had spent time with closely within 24 hours has diagnosed with something (fever, ear infections, strep, impetigo, chicken pox, etc). It seems once her rogue antibodies turned on due to the original strep, those antibodies play havoc within her brain in response to any trigger, even though strep was the original set off.

 

Day care and schools (she has an older brother who is going into gr.2 - non-pandas) are now very scary places for us, and we are constantly balancing the "risk" of her going. Thankfully, she is not in Kindergarten yet, so we have some time before we cross that bridge... To make the decision, we usually look at how she has been doing overall - we find that too many exposures over a short period of time and she needs some "bubble time" (that is our phrase for staying in the house and limiting exposure as much as possible). I work in schools myself, so I often change clothes/wash hands before entering the house - not sure if it actually helps, but it helps me feel like I'm doing something. We both need to work, so we often try to balance days off between our two employers.

 

I find myself worried about the fall - we are still recovering from the first major flare in the spring, and have seen mini-flares that haven't yet stopped - all these from other things besides strep. I'm worried about what a strep infection will do...

 

Sending you warm wishes...

 

Dear junkyard jean,

 

Just wondering how you and other moms treat these exposure flairs.... Do you immediately increase the abx. or do you just give it a few days to calm down again.... This is what I struggle with. My doctor has my son on prophylactic abx. but I can increase the doseage as necessary to treat if symptoms get bad enough. Because his symptoms are always there to some degree, I never know if it is the "right" time to increase the dose. In your experience do the flairs typically resolve on their own, assuming your kiddo is not infected. Just curious....

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I can't tell you the number of strep tests I've had, and my DShas had - never to have a positive culture. The past years DS's immune system seemed a lot stronger. He's had pandas (pitand actually) for 3 years - and has had 2 IVIGs. During the past year I attribute the improvement in not getting sick in the first place to switching to Doxycycline for a chronic mycoplasma infection that we uncovered while researching possibility of Lyme. Also to giving Vit D3 and fish oil...I was fairly religous about the Vit D3 for most of last winter, not as much on the fish oil. Also, at ANY sign of anything in a family member I would give sambucus and load up on Vit C via juice, smoothies and or supplements. Seemed to help a lot. DS was low on Vit D3 - at 25, same as me, so I just started to put the drops on everyones cereal in the morning before I pour the milk on.

 

DS is also a little older, so its easier as at 13 you have less of the running around with a a runny nose thing going on in the school yard.

 

She had original reaction in Spring due to a strep infection? Have you thought of participating in the IVIG study through the NIMH? IVIG can be scary, but if she is reacting to everything now, and has not returned to normal with antibiotics (do you have long term prescription?) I would defiantly consider it.

 

Also, Dr Tanya Murphy in FL is doing an antibiotic study. Another option. Are you working with a pandas specialist?

 

Best-

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"Dear junkyard jean,

 

Just wondering how you and other moms treat these exposure flairs.... Do you immediately increase the abx. or do you just give it a few days to calm down again.... This is what I struggle with. My doctor has my son on prophylactic abx. but I can increase the doseage as necessary to treat if symptoms get bad enough. Because his symptoms are always there to some degree, I never know if it is the "right" time to increase the dose. In your experience do the flairs typically resolve on their own, assuming your kiddo is not infected. Just curious...."

 

 

Dd was on proph abx as well (took her off in July due to side effects - no growth, abdominal pain, really bad teeth), but because she reacts to anything, we found the abx (it was pen v) not to be very helpful as there is no abx that can protect her from everything - although it did seem to protect her from strep as she did not have a re-occurring strep infection since she was placed on it. We did a trial of zith, but she got major abdominal pain and we had to stop. To complicate things further, she was queried to have had serum sickness in November 2011, so augmentin is out for her as we have been told it is amoxil based. She just seems to have bad reactions to abx overall :( I should add that it does not look like she has any other infections in her system as all tests have come back negative so far.

 

For exposure flares - we hunker down to her basics - strong, clean diet, try to get rest, and most recently, we have had great success in getting her to do high energy focus sports activities (biking, taekwondo, etc) when in a flare-up. This is totally different for us as usually we would increase the rest portion in the past, but that wasn't working so well as she was just getting more aggressive - the high output seems to give her some reprieve from her brain and we have definitely seen a decrease in aggression compared to when we would keep her strictly at home (but it has not helped her to sleep any better).

 

We also work closely with a ND, so well-timed remedies have really helped as well. If she gets a few exposures in a row, we literally stay at home in lockdown until it passes - mostly due to her behavior. She pretty much goes back to being 2 years old - but in a four year old body that can do much more damage... Thankfully, because of the hyrdotherapy treatments from ND, her immune function is getting better so the flare ups usually only last 2-5 days now (fingers crossed that will hang on) - that being said, it is summer time, and I'm really worried what we are going to do when the "big bugs" come out to play in late fall...

 

As soon as we think we have something that works, it flips upside down and back to square one!

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