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PANDAS and Viruses


emma1

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For those of you with PANDAS children who have increased symptoms during illness -- do the increased symptoms fade as the illness goes away? We have had some minor illnesses and some minor symptoms. The symptoms left with the illness. But recently, my daughter got really ill, and some more noticeable symptoms developed. She is now feeling better, still on stronger antibiotics, but the symptoms are still there (not awful, but definitely there). They were pretty much gone, and had been gone for months before this illness.

 

I would be particularly interested if anyone used any supplements, etc., to get their child back on track.

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Anyone? Could really use some encouragement that this phase is going to pass!!! (And get better, not worse!) I am just really surprised that the symptoms are worse without an actual strep infection! (OK, gotta stop -- way to many exclamation points.) Em

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For several years my PANDAS son still did not exhibit normal symptoms of illness - his tics would increase when his siblings were sick - they would have the stomach flu and he would have tics. In recent time he is now starting to get sick like a normal kid - actually feel sick, and want to rest in bed. Symptoms do increase and then decrease as he gets better. A while ago he came down with a stomach flu - the tics started up the night before - they lasted for a few days - we used the l-carnitine to help the vocal tic. I would let things ride out - it takes time to get the immune system back in order - if she was more sick her body will need some more time to get back to base level for her.

The other thing to keep in mind - if you are still on an increase antibiotic - that yeast can become a problem too - that may keep tics hanging around. If probiotics work well for you make sure she is taking some extra ones.

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Emma,

 

We definitely saw an increase in PANDAS symptoms with a viral illness. My son had the flu, and my daughter's OCD and emotional lability got really bad even before any flu symptoms were noticeable. The PANDAS symptoms waned slightly after she got over the flu. But they were still bad. I believe they eventually decreased because of the dietary changes and supplements, and not just because the virus was out of her system. Our naturopath suggested lots of vitamin C and selenium picolinate while she had the flu, and the viral illness did pass relatively quickly, but again the PANDAS symptoms took longer to die down. My earlier posting lists the dietary changes we made to support her overall immune function improvement.

 

What are your daughter's symptoms? One thing that brought relatively quick relief to our daughter, who had severe mood swings, was Natural Calm Kids (a magnesium supplement with Vitamin C and zinc). She seemed much calmer just within a couple of days of starting on it.

 

I hope things get better for your daughter soon.

 

Uma

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Emma,

 

I let the experts answer first, because I don't have a PANDAS kid. I really believe that all kids with tic disorders, no matter the origin, are very immunologically sensitive. Like I said, my kid is not PANDAS, but I can guarantee you that if he got a nasty infection like strep, he would start ticcing again while his body dealt with it. I think these things disturb their little neurotransmitters or something.

 

One thing that really jumped out at me from your post is your description of her illnesses. I really think what you are witnessing is the difference in recovery between "minor illnesses" and "really ill." It will probably just take longer this time.

 

Tami

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Something just hit me as I was reading this thread... I've always said I could tell when my daughter would be sick the next day, because the day before she got sick, she would always be so emotional, whiny, and difficult. I'm not sure anyone ever believed me fully. Do you think this might point in some small way at PANDAS? So far, I havn't thought she was PANDAS. The only thing that ever seemed linked was that I'm pretty sure her very first episode of tics was after a fairly large sickness.

 

Calicat

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For those of you with PANDAS children who have increased symptoms during illness -- do the increased symptoms fade as the illness goes away? We have had some minor illnesses and some minor symptoms. The symptoms left with the illness. But recently, my daughter got really ill, and some more noticeable symptoms developed. She is now feeling better, still on stronger antibiotics, but the symptoms are still there (not awful, but definitely there). They were pretty much gone, and had been gone for months before this illness.

 

I would be particularly interested if anyone used any supplements, etc., to get their child back on track.

 

 

I have a 7 year old son that has been battling Pandas since summer 2008. He was improving and was getting better and healthier overall. Although his titers were high, they were coming down and the long term low dose antibiotic was stopped and we just kept up with the other support supplements. However after a month he started to show some old signs again and the next month he got a fever andsore throat. His symptons got worse each week. I am hoping he does better on a new antibotic this time.

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For those of you with PANDAS children who have increased symptoms during illness -- do the increased symptoms fade as the illness goes away? We have had some minor illnesses and some minor symptoms. The symptoms left with the illness. But recently, my daughter got really ill, and some more noticeable symptoms developed. She is now feeling better, still on stronger antibiotics, but the symptoms are still there (not awful, but definitely there). They were pretty much gone, and had been gone for months before this illness.

 

I would be particularly interested if anyone used any supplements, etc., to get their child back on track.

 

we always know shes sick before she seems sick because of how she acts. after treatment it passes pretty quickly. this time its slower than usual- i would assume it depends on how her brain is reacting to being ill. but they definately come and go.

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I wanted to add that we have had a terrible 8 days around here. 3:00 am last Sat morning youngest son wakes up moaning. He says his stomach feel horribly acidy. He is afraid if he throws up it will burn his throat out. I gave him some aloe water. Eventually woke hubby up to go get some rollaids. I was almost panicking. He vomits 3 or 4 times, then diarrhea starts. By Sun he's complaining of pain in his right side. He's sick, really sick acting, but his stomach does seem better. I decide to take him to a "med express" to let a Dr. make sure he doesn't see anything that would indicated appendix. I have been fairly happy with this place on other occasions. As the nurse is weighing him, she asks if he's up to date on his immunizations. I answer "unfortunatley yes." We get in the exam room and she asks me if my kids had vax reactions and tells me she has an autistic son.

 

Dr. enters. Big guy with dreadlocks. Have never seen him in there before. I'm anticiating someone with a good sense of humor. WRONG! This guy is totally stuck on repeating that my son would not be there if he would have gotten the flu shot. Why oh why was this happening (i'm asking myself). I took it as long as i could, then ask him if he was really willing to be injected with mercury to avoid a case of the flu. I told him that it was all over the place that the flu vax was not even a good match this year. He says "worked for me" I said, no you must have a good immune system. He argues over and over that "there ain't no mercury in the flu shot" mercury is illegal, can't even get a mercury thermometer. I told him to go get the package insert. He kept repeating that he didn't know why i would be talking about mercury in the flu shot. Impossible, illegal, on and on. I backed all the way out of the exam room past the desk (where another Dr. was sitting) nurses, receptionists, repeating "go get an insert." A different nurse has to let us out, as they had closed, and the doors were locked. She asks me if i would mind telling her what that was all about and informs me that the Dr.s don't know, or don't want to talk about it. She tells me that they almost lost there 4 year old so to autism after his last round of shots. Started lining up his toys and starring at lights. She is no longer vaxing her 3 yr old daughter or her son.

I told her "I WANT TO TALK ABOUT IT" why doesn't she tell those Dr.s in there, instead of hushed voice talking to me. These are our kids. I also told her, I was paying that guy (dr.) TO KNOW. I was furious.

 

Monday the diarrhea starts again. Totally explosive. Did i mention that his fever was running 104? He says his throat is sore. This child is now crying inconsolably and telling me that there are some things that he has to tell me about and that it's all so terrible. Nothing makes sense. He is feeling guilty and insists that he just can't tell me. Over and over (this child is afraid he will die if he breaks a glow stick and some gets on his skin...i KNEw there was nothing here to really know).

 

I take him to family Dr. who saw him only one time previously. It was for strep, which he had no increase in neuro problems with a few months ago. I requested and this dr. prescribed zith last time. He tells me that he some some very enlarged lymph nodes (nothing new there, they used to get the size of a golf ball) a horrible looking throat (although no white spots) and the stomach sounds are there, but not horrible, so he hopes the viral intestinal part is mostly behind us. Does a swab, says to go get amox filled in case it's strep. If no strep it's viral that is affecting his whole system. We get home, my baby comes out of his room telling me that the bad thoughts won't stop. He's crying. He tells me it has been going on for over and hour and he can't make it stop. With all of my wisdom and research, I do what any informed mom would do. I send my husband to Target to get him an air hero guitar (something that was planned for Easter instead of candy).

 

The Dr. calls that same evening (God bless him) he's says strep is positive. We started amox that nite. Two horrible episodes of guilt/fear/anxiety in the same day...nothing since.

 

These episodes were NOT normal "child not feeling well" acts out of sorts, type of thing.

 

I still don't know if it was the strep or viral illness that caused this as it looks like he had two things at once.

 

This started to be about sleep issues. Both boys do this weird thing where they will sort of wake up and act like they are picking at some tiny thing. Both of them. Got off topic sorry, but I guess i'll resist the temptation to delete. :)

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Kim,

What you have described with your son and the intrusive thoughts, needing to tell you things, unspecified fears, etc., and the recent strep infection, and the improvement after antibiotics is classic PANDAS. It is stuff I have seen with my kids. Have you already looked into that?

 

Kelly

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