How long do exacerbations due to exposure last?

[Guest pandas16]

In your experience, how long to do flare ups last due to exposure only?

[peglem]

My daughter started what I think is an exposure flare last week. I was scared because it usually takes at least a month to get her back. But, this time I added an extra dose of zith. She's currently on every other day and I gave her 3 days straight. Plus, I doubled her CLO for 2 days (anti-inflammatory) and added in 4capsules/day Kirkman's yeast aid after noticing that all the ingredients are antimicrobial, not just anti-yeast. She's not all the way back to pre-flare, but has not had any more of the hellacious fight or flight episodes that are the worst and major symptom for her.

[eljomom]

What is CLO??

[peglem]

What is CLO??

Cod liver oil.

[eljomom]

oh--thanks:)

[Guest pandas16]

Just out of curiosity, was your daughter in complete remission before she was exposed or was she still in an exacerbation?

[Stephanie2]

Not sure if anyone knows for sure, I can certainly say that I don't know for sure. But here is what happened recently. My sore throat came back after stopping azith. Right away, my both of my boys' pandas symptoms flared. I did not start antibiotics right away b/c I wanted to give my body a few days to clear more azith so that I could go get an accurate strep culture. My 6yo son continued to flare (my 2yo spent a couple days with grandma, his flare stopped) but I knew he wouldn't get an infection b/c he was on 2 antibiotics. But he was sleeping inches away from my face during this time! I finally got the culture, and then got back on something to fight off strep. May be coincidence but within 24 hours his pandas symptoms stopped. Who really knows, but that is what I witnessed.

Edited January 28, 2011 by Stephanie2

[peglem]

Just out of curiosity, was your daughter in complete remission before she was exposed or was she still in an exacerbation?

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare.

[Stephanie2]

Just out of curiosity, was your daughter in complete remission before she was exposed or was she still in an exacerbation?

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare.

 

Peg, a couple things come to mind regarding that her OCD never fully remits. I know some ppl believe that for some kids the OCD becomes a "habit" and after pandas goes away you then have to do some CBT to clean up the mess. I, personally, do not believe that to be the case, only b/c when my boys are out of pandas they are fully out. NO ocd left whatsoever. And they have had pandas since the ages of 15 and 20 months so you would think at least for my 6yo that OCD would be ingrained by now but it's not (but we are talking about a 6yo vs. a 16yo, so maybe she has been dealing with untreated pandas long enough that it IS a habit). Also, have you looked into lyme? Seems like when the OCD does not fully remit, ppl are finding out that the presence of lyme and/or coinfections are the problem. Lastly, in the case of my boys, clostridia and/or klebsiella causes mild OCD (and severe rages, but that's another topic). I know you do things to fight yeast, but have you ever had her tested for intestinal bacteria? These are bad bad bad bugs in my house. My 6yo turns autistic overnight with clostridia. I call it "autism in a box", not to make light of autism at all, but the regression is quite immediate and astounding and alarming. And the recovery (when vanco or flagyl is started) is equally astounding. Here's an example, when he recently had clostidia (went 3 months undiagnosed b/c one of our docs misinterpreted the lab report) he was doing the following: standing in the corner, putting hands over ears and huffing air forcefully through his mouth over and over with anxious look on face, lost all eye contact and social skills, while shopping sitting on the floor staring at the ceiling and saying random inappropriate phrases over and over again, sitting under the table and looking confused when asked to come out, just completely lost all around. I thought I lost this kid forever this time. Then another doc picked up on the clostridia markers, started flagyl and all the above behaviors disappeared in 4-5 days. He has completely normalized in every way. To be honest, I just don't get it...something you have to see to believe (and I still shake my head in disbelief that clostridia could DO that)! By the way, as far as I can tell, my 2yo does not react as strongly to clostridia, just some aggression and brain fog - I don't "lose" him like I do my other one.

 

Ok that was a long way of saying that kids with autism or more prone to these infections so maybe that is something else to look into in your spare (heehee) time...

[peglem]

Just out of curiosity, was your daughter in complete remission before she was exposed or was she still in an exacerbation?

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare.

 

Peg, a couple things come to mind regarding that her OCD never fully remits. I know some ppl believe that for some kids the OCD becomes a "habit" and after pandas goes away you then have to do some CBT to clean up the mess. I, personally, do not believe that to be the case, only b/c when my boys are out of pandas they are fully out. NO ocd left whatsoever. And they have had pandas since the ages of 15 and 20 months so you would think at least for my 6yo that OCD would be ingrained by now but it's not (but we are talking about a 6yo vs. a 16yo, so maybe she has been dealing with untreated pandas long enough that it IS a habit). Also, have you looked into lyme? Seems like when the OCD does not fully remit, ppl are finding out that the presence of lyme and/or coinfections are the problem. Lastly, in the case of my boys, clostridia and/or klebsiella causes mild OCD (and severe rages, but that's another topic). I know you do things to fight yeast, but have you ever had her tested for intestinal bacteria? These are bad bad bad bugs in my house. My 6yo turns autistic overnight with clostridia. I call it "autism in a box", not to make light of autism at all, but the regression is quite immediate and astounding and alarming. And the recovery (when vanco or flagyl is started) is equally astounding. Here's an example, when he recently had clostidia (went 3 months undiagnosed b/c one of our docs misinterpreted the lab report) he was doing the following: standing in the corner, putting hands over ears and huffing air forcefully through his mouth over and over with anxious look on face, lost all eye contact and social skills, while shopping sitting on the floor staring at the ceiling and saying random inappropriate phrases over and over again, sitting under the table and looking confused when asked to come out, just completely lost all around. I thought I lost this kid forever this time. Then another doc picked up on the clostridia markers, started flagyl and all the above behaviors disappeared in 4-5 days. He has completely normalized in every way. To be honest, I just don't get it...something you have to see to believe (and I still shake my head in disbelief that clostridia could DO that)! By the way, as far as I can tell, my 2yo does not react as strongly to clostridia, just some aggression and brain fog - I don't "lose" him like I do my other one.

 

Ok that was a long way of saying that kids with autism or more prone to these infections so maybe that is something else to look into in your spare (heehee) time...

We have done testing for intestinal bugs, and she may have had some in the past, but not anymore. I think in my daughter's case, she just doesn't have the normal development (yet) to replace the OCD, if that makes sense. The neurological growth, the neural connections are not there, for the most part. I do believe (flying in the face of conventional wisdom here) that she is still capable of development. At any rate, nobody can prove she isn't, so we'll just have to see what she can do.

[Mary M]

In your experience, how long to do flare ups last due to exposure only?

 

For our specific situation: dd had IVIg mid-June, other than two major symptoms disappearing immediately it took five weeks before improvements began slowly. Now, at 7 months post IVIg, flares due to exposure last 24-48 hours. When they occur we up her maintenance dose of 500mg aug once per day to 875mg twice per day and with this past week ends flare also added ibuprofen (she abx had already been increased for one whole week). Last week end's flare was HUGE.

 

Hope this helps

[Fixit]

this is for peg and steph....

just another thought on the ocd thing...(ps we don't really deal with it here, but always on look out..maybe some complusive tics)

 

in someways i could completely agree with steph, in that i should just go away if everything is cleared...

on the other per saving sammy....if you remember he did really well towards the end...he had 2 months of sysmptom free???

but when he came home things started up again....and she rearranged the furniture to break how his brain perceived things to break the cycle...if that makes sense..

so in that way i could see how cbt would be helpful..

it makes me wonder and concerned as ds8 just mentioned how he can't do his tic right...it is a sensation..but doesn't relent until it's completed or just right...since it's in his lips..its more prevelant when he eats...same as ds10 is trigger by things he does now...not so much just there....but more if i ask a yes or no question...the nod or shake to answer gets stuck in a loop and becomes a tic...

 

Peg...where do you get the kirkman yeast aid?

[peglem]

Peg...where do you get the kirkman yeast aid?

 

Kirkman's labs:

http://shop5.mailordercentral.com/kirkmanlabs/

[KaraM]

In your experience, how long to do flare ups last due to exposure only?

 

Not sure if our current exacerbation is due to expsoure or something else. It does not seem like our PANDAS dd8 has any type of infection and we know her brother did have strep. So we are treating it as exposure triggered. Our dd8 has been in exacerbation since Nov/Dec. We didn't start treating her brother until mid December. He ends his abx treatment today and it appears as if he is clear. But in spite of this, she is still not doing well. When we talked to Dr. B a couple of weeks ago, I asked how long it would take once her brother's infection was cleared. He said every kid is different and that it could be anywhere from a few days to a few weeks...

 

Kara