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Do any of you think a virus was the trigger for PANS?


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I wonder if there are many of you whose child had gradual onset of symptoms and think their case may be from PANS rather than PANDAS? My son has been battling a bad viral infection for the past 3 months which we think is mono after having very high titers of CMV and HHV-6. He is still dizzy, nauseous, weak, fatigued and cannot focus. He also developed tourettes type behaviors and is extremely emtional. When he is upset, he says terrible violent things and when he is not he says inappropriate things like, "poo" over and over. He is also not listening as well as he used to and refuses to do what he is told more often. He did have scarlet fever last year so he has also had strep in the past but not many positive throat swabs and blood work is normal for ASO.

 

We have been getting him to school about 3 days/week but he is a mess when he gets home. I am considering trying home-bound for a month or two to see if he heals faster.

 

I am hoping that as he recovers from the mono, his tourettes will go away. Has anyone had this experience? If the cause is viral, has anyone taken antiviral meds with some success?

 

Thanks.

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My daughter is PANS. She had her exasperation's following mycoplasma pneumonia. She had severe separation anxiety and was unable to go to school and fell apart when she did. I wish that I had just pulled her out looking back.She is on Biaxin full time until she is 18, and steroid burst during mild exasperation's. Mono can defiantly be a trigger as well as any virus for my daughter. You do not need a positive test for either PANDAS or PANS. She never tested positive for strep. I have never tried ant virals but would love to know if anyone has.

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for our ds5, we never established what caused his PANS. dd9 was a strep case or so we think. In truth, her PANDAS started before the documented strep, only it was not as bad as it was after the strep.

 

I would encourage you to do a complete immune panel if you have not done that. Wait and see does not seem to be the process that works with PANS/Pandas kids. iF you suspect PANS/PANDAS try to get to be seen by one of the PANDAS drs.

 

For our ds5, some touretts like symptoms went away on steroid taper. we are currently waiting to see if they are going to come back.

Also, many of PANS/PANDAS kids seem to have some issues with MTHFR enzyme and methylation. A cheap genetic test can tell you if your child has these issues.

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For both of our sons, the trigger seemed to be mono. When our second son showed symptoms (tics), I remember taking him to our pediatrician and asking for the blood test. He did not show any signs of any illness, but the she tested for strep and mono. Tests came back positive for mono.

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Our DS began this journey 3 years ago with classic PANDAS - after struggling to find help. He eventually got 90% better with Augmentin XR. Then needed IVIG. Then discovered Mycoplasma. Then relapse again and found off the chart epstien barr (I believe this is mono) treated with 2 antivirals. Doing great then sick on Thanksgiving and another relapse- this week we discovered off the chart coxsackies virus, just began antivirals Friday. So yes, our child gets neurological symptoms instead of physical symptoms with all infections! We will be testing for mitochondrial DNA issues.

 

Prayers to you... Oh BTW - in the 3 years of issues this illness is the first that brought on Touretts like symptoms instead of OCD. I hope and pray that it goes away after treatment but the verdict is still out.

Edited by 3boysmom
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Hi- nice talking to you again. This is off topic, but I was just reading your past posts and was wondering if you ever had the tonsilectomy done. If you are still looking for an ENT in our area, pm me. I've met one recently that is very familar with pandas/lyme. Very nice doctor - the kind that truly listens.

Edited by philamom
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Our son recently had a really bad exacerbation with a Coxsackie viral infection.

 

The funny thing is, he had a coxsackie infection before PANDAS and was fine with it. He had strep once before as well with no reaction to it. For whatever reason, the strep infection he got last year set him off somehow and he's struggled with any infections since then.

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Hey JP Dad-

 

My kids have been the same as yours. Went through life, both having strep once prior to pandas with NO issues. At ages 5.5 and 8.5 they both had strep (barely any symptoms but culture positive) and our pandas journey began. During the first two years after the triggering strep, it seemed anything set them off: cold, virus, illness exposure, etc. Fingers crossed, I feel we have found some footing with this illness. They both still flare with viral, but it is MUCH milder, and usually controlled with abx and advil for a week.

 

Hoping you see a course of exacerbations getting milder with time.

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THanks all so much for your replies. I will respond again later when I have more time but wanted to ask how long your child's mono virus lasted? My son has had it for 3 months now. Which antivirals do you find helpful? Do you need to use them full time? Do you give abx too if the cause is viral?

 

Philamom - would love the name of the ENT!

 

Also - we saw some improvement recently with parasite treatment in my son. He was much worse when on the treatment, then made improvements after. Has anyone experienced this?

 

THanks!

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Hey JP Dad-

 

My kids have been the same as yours. Went through life, both having strep once prior to pandas with NO issues. At ages 5.5 and 8.5 they both had strep (barely any symptoms but culture positive) and our pandas journey began. During the first two years after the triggering strep, it seemed anything set them off: cold, virus, illness exposure, etc. Fingers crossed, I feel we have found some footing with this illness. They both still flare with viral, but it is MUCH milder, and usually controlled with abx and advil for a week.

 

Hoping you see a course of exacerbations getting milder with time.

 

Yes, we do seem to have similar situations. The first time he got strep, he was so sick and miserable he would not even move around. He just laid on the couch for 3 or 4 days, but had no PANDAS symptoms. The second time he got strep, there was no visible illness at all until the tics and OCD came out of nowhere, which prompted a trip to the doctor who thankfully did a strep test. It all makes me think a certain strain of strep is responsible for this.

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JPdad- TOTALLY agree! I have TWO kids - both had strep previously (different times) with sore throat, fever, miserable. No pandas. Both had strep again, at the same time, NO symptoms (maybe a little malaise)- but a friend's child had strep so we cultured- positive! PANDAS!

 

Now that autoimmunity is triggered it is here to stay- however, we seem to have had a handle on it the last 2 yrs.

 

I def think certain strain of strep!!

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Hi Megan-

 

We were lucky enough to do pex on both of them during their worst episode. This brought them to their baseline (no symptoms). Since then, I think three years ago, we jump on any increase in pandas.

 

Both girls were on zithromax for about 2 years straight. Both had T&A.

 

Now, they are not on any meds regularly, however, if we see any pandas issues surface, we immediately start them on a course of daily zithromax and regular advil dosing. Usually this calms things, if we start it immediately. If this doesn't help symptoms (usually only happens post illness) then we move on to the bigger guns, steroids. We try to use the least steroids possible, but start them quickly.

 

Once the train leaves the station, things are harder to control, so to speak.

 

It has been a balancing act, and we have had to get very good at reading their early warning signs; moodiness and negativity for one, and temper tantrums for the other.

 

They have each had probably 3 major episodes in the last 4 yrs, since diagnosis. One we did pex, the other two we did IV steroids. We treat the minor flares with the abx, advil and once and a while a short steroid burst. With this protocol, thank goodness, they are at about 90%, 90% of the time. My older one is actually faring even better than that for the last year and a half.

 

A year and a half ago, after they each had their last big episode, ocd lingered, even after we could see they were better. For this we went to USF's outpatient intense ocd therapy program- that was wonderful and we all learned so much.

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