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Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

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Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

Hey Michael --

 

I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors? :wacko:

 

I'll be interested in hearing what Buster has to say, also!

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I think our son would also qualify as chronic: for the past 3 years, he's never gotten back to baseline, and we've only seen significant improvement after major medical interventions (3 rounds of IVIG, steroids, high-dose abx). The steroid and IVIG treatments were only temp fixes for him, did not get him back to 100% before things started downhill again and we saw another major exacerbation each time. I'm so sympathetic to the tough decision you had to make with your PANDAS child - we came close to admitting our son several times, when medical professionals repeatedly recommended it and we were simply running out of the ability to care for him at home without neglecting our other children.

 

That being said, there is hope! We've been on the "Saving Sammy" dose of augmentin XR for 3+ months now. Our son is probably up to 75% of baseline now, the best he's been in 3 years. His personality is returning; every day, we see more of the "old" him shining through. He laughs again, jokes and goofs with his younger brothers, and the constant fear / terror in his eyes and face are gone!!! He holds rational conversations, enjoys interacting, and overcomes more OCD / anxiety obstacles each week.

 

We're not out of the woods yet. Just over a year ago, after IVIG round 1, we thought the nightmare was over as well. But we're more optimistic this time. Clearly there's no single treatment regimen that works for all of these PANDAS kids... but there are options, and I believe some combination will work for each of our children. The challenge is finding the right doctor who is willing to try different things until they find the magic combo for your child.

 

Dr. K is that doctor for us. And he agrees with you that the chronic cases are tough: he told me that our son is probably his "most recalcitrant case" and has gone the longest to reach "conversion" after IVIG rounds 2 and 3 this summer. The high-dose augmentin was the final piece (we hope and pray) for our son, and Dr. K didn't give up when IVIG alone didn't cut it.

 

So hang in there, Michael. I don't remember if you're consulting with one of the "big 3" (Dr. K, Dr. L, Dr. T?)... but if you have a cooperative and determined doc, your son can get his life back. We're praying for you!!!

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Thanks Worried dad,

I'm ready to move on to Augmentin XR on trial. My son is lighter than yours so it will be a smaller dose. My son is 9, I know your son is older, correct?

We see Dr. T and Dr. Ken Bock.

Given you had seen so little, when did it seem like the Augmentin was kicking in? How quickly?

 

Michael

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Were right there with you Michael My so is 15 and been there ,done that.We had so many Psychs evaluate him.None knew what to do,they all wanted to give him medications and asked stupid questions.Even the Neurologists before Dr T were speechless,and wanted to add medication after medication.Im ok with meds if they work.Hes on risperadal now I am not a fan but he was off the wall so we had to. The best so far was the IVIG he was pretty much normal for some time and we are still waiting anxiously for the next dose.Hes on antibiotics and is doing ok.I hope your mds are willing to listen to you and not just medicate him.Are you in NY?Im in NJ and have seen all of the worthwhile mds in the area.

 

Thinking about you

 

Melanie

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What do you mean by 'chronic'?... do you mean when they have had symptoms for a while and they are kind of always there and you aren't sure that strep is the 'exacerbator' at this point?

 

or do you mean the kids that get strep or illness and things just get worse with each illness, and you see definite "exacerbations". By chronic, do you mean those that can't lick the strep? ..... (I see more of a wax and wane, not dramatic episodes, and strep does not seem to be at play here in recent years)

 

 

thanks

Faith

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Cool - if you've got Dr. T on your side, you're in good hands! For our son, we saw obvious improvement within the 1st week of starting the higher dose of augmentin. He's 13 and about 106 lbs, so he's on the 2000 mg daily XR. Our son's situation is complicated by those 2 rounds of full-dose IVIG last summer, though. Don't know for sure how much that contributed to our son's progress, vs. the augmentin alone: could have been a synergy of the two?

 

Good luck!

 

 

Thanks Worried dad,

I'm ready to move on to Augmentin XR on trial. My son is lighter than yours so it will be a smaller dose. My son is 9, I know your son is older, correct?

We see Dr. T and Dr. Ken Bock.

Given you had seen so little, when did it seem like the Augmentin was kicking in? How quickly?

 

Michael

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Michael- What do Dr T and Dr Bock think? I hope you get relief with the Augmentin. Although, so far, my dd is not chronic- it did take about 30 days to see a difference on the antibiotic (the third we tried). Has your son ever done a steroid burst?

 

Hi, DC!

Worried about steroid burst because of his immune deficiency. As you say in Dr. T's post, he doesn't recommend steroid bursts for kids like my ds9.

I am trying to get the hospital to do consults by phone with Dr. T and Dr. B re the Augmentin XR. Gotta keep up the pressure.

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If I take the definition of Chronic to be Trifilleti's and Pavone's definition (i.e., gradual onset, carrier state, more tics than OCD), then I don't think my daughter would qualify. Her symptoms remitted with antibiotics -- but came back when antibiotics were discontinued. In addition, her exacerbations were linked to strep in the house. Once treated it remitted.

 

Looking at case histories, it seems like those with tics definitely take longer to remit.

 

Buster

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

Hey Michael --

 

I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors? :wacko:

 

I'll be interested in hearing what Buster has to say, also!

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What do you mean by 'chronic'?... do you mean when they have had symptoms for a while and they are kind of always there and you aren't sure that strep is the 'exacerbator' at this point?

 

or do you mean the kids that get strep or illness and things just get worse with each illness, and you see definite "exacerbations". By chronic, do you mean those that can't lick the strep? ..... (I see more of a wax and wane, not dramatic episodes, and strep does not seem to be at play here in recent years)

 

 

thanks

Faith

 

These are good questions, Faith. I think Mom of OCD hit it right on the nose

 

I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors?

 

I think it has to do with how long it's been there, how it waxes and wanes, the intensity of its exacerbations, and as I said, the lack of "sudden onset" symptoms.

 

M

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okay, well I guess my son will fit into that category, I am not positive what the initial trigger was, altho I suppose its possible to have some minor quirks (tics, ocd tendencies) that were originally there and that can build up over time with subsequent infections, and for us it seems to be viral, I just can't find definite proof of strep (but for one time a few years back), hard as I try.

 

so all we've tried is antibioitics and so far a month on augmentin and almost a month on azith (at full strengh, but not mega dose) does not seem to have any benefit that I can see. You can also see where/why I am reluctant to go further with steroid or even persue IVIG, due to the fact that we have tics and the questionable connection to strep. We've discussed before how our kids are similar, altho my son does not have the rages, just anxiety/irritibility that can get a little ugly if we try to discipline or argue back. but tics and ocd are the problem here.

 

don't know if that helps.

 

Faith

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okay, well I guess my son will fit into that category, I am not positive what the initial trigger was, altho I suppose its possible to have some minor quirks (tics, ocd tendencies) that were originally there and that can build up over time with subsequent infections, and for us it seems to be viral, I just can't find definite proof of strep (but for one time a few years back), hard as I try.

 

so all we've tried is antibioitics and so far a month on augmentin and almost a month on azith (at full strengh, but not mega dose) does not seem to have any benefit that I can see. You can also see where/why I am reluctant to go further with steroid or even persue IVIG, due to the fact that we have tics and the questionable connection to strep. We've discussed before how our kids are similar, altho my son does not have the rages, just anxiety/irritibility that can get a little ugly if we try to discipline or argue back. but tics and ocd are the problem here.

 

don't know if that helps.

 

Faith

 

 

Faith, any immunological tests done? Immune deficiency issues? Just curious.

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Buster posted, see his reference to Trif and Pavone study.

 

 

where is the post?

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