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I have two children with PANDAS my ds9 is doing fabulous (finally)! My ds6 is much more complicated and that is why I am sending this note out for advice. He has a lot of new teeth coming in and its clearly a trigger for him. But I also notice based on my journals he has PANDAS episodes at certain points of the year. Right now being one of them. I have logged for the past 2 years (this year being the 3rd year) that mid January the symptoms start and by the end of January much more severe symptoms. I thought maybe the weather, windy and cold right now, he is also very itchy. Giving Singulair granuales, quercetin, enhansa amongst many other supplements and probiotics and antifungal and most importantly he has been on longterm Azithro daily for 15 months now.

 

Does anyone else notice a trend with symptoms at a specific time of the year? And a local friend whose son also has PANDAS in starting another exacerbation right now too.

 

I should also add that my son and my friends son are home schooled so it can't be exposure to other kids. They don't see each other either. Why does it cycle at same time of year like clockwork?

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Very timely. This week is my DD7's birthday. Every BD for the past 3 yrs, she has completely lost it. You feel it coming around the new year, it explodes the day we have 6 screaming girls in the house for a party and slowly gets better as spring approaches. She has never had strep. Her Cunningham labs show CamK 179 and sky high antilyso. Other labs suggest chronic infection, possibly lyme, but not a slam dunk. Last year, she responded extremely well to zith and has been on it for a yr. But it hasn't been a "cure". She also responds very well to NSAIDs. But again, not a long term solution. She's less "sick" than her brother and has therefore been harder to figure out.

 

I know she has methylation issues, huge allergy issues, gut issues. I have scratched my head wondering about the seasonality of it. She's tested for low Vit D but supplementing hasn't made a difference. She has high copper and is borderline pyroluria (zinc/B6 deficiency that is a huge piece for her brother). But the zinc/B6 supplement that worked wonders for DS has only somewhat helped DD. So once again, she is blazing her own trail. Heaven forbid the stuff I learned the hard and expensive way on DS could be useful for her. Nope - a whole new set of rocks have to be unturned. She is currently fighting EBV and extreme fatigue and anxiety and I'm re-looking at Carl Pfeiffer's writings on histamine, histadelia, schizophrenia and methylation. If anyone has any ideas or research, would love to hear them.

 

(BTW - teeth cause issues here too - we use an oral abx mouthwash called Peridex from our DDS - really helps reduce gum inflammation and the duration of a tooth "episode").

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We too, just in the last 5 days, have started to see a minor ramp-up of symptoms in our DS. After having disappeared for almost 2 months, his eczema has cropped back up, along with a few behavioral things. His best friend was sick, so I was thinking that DS was responding to that exposure. But now that you've brought it up, and I, too, take a look back our journal, I see the same pattern: mid-January through the first week or so of March, he's a little "pricklier" than he is in the months preceding or the months following. I can only hope maybe this year will be different and that this bump will be smaller/lower and shorter-lived than in previous years, given his all-around better status.

 

I'm wondering if anyone has tried one of those SAD (Seasonal Affective Disorder) full-spectrum lights with their kids? We actually bought one several years ago when DS had a "regular OCD" label because we thought we were seeing a seasonal cycle to the severity of his symptoms even back then. We still use it, but mostly just for helping chase the dreary grey morning away when its time to wake up and get ready to go to school; we haven't actually sat him in front of it for any length of time in years.

 

But maybe we should try that? :blink:

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My son has had two major episodes and both started in April/May (2010 & 2011) and ramped up through the summer. We had HORRIBLE summers and then started coming out of the episodes right about when school started. I know that both times he was exposed to strep but he's being exposed right now in school and it doesn't result in a major episode. So I'm wondering if the approach of summer and the stress that school puts on these kids at the end (even giving them the impression that they might be held back right up until the last report card) is too much for him. I think he gets very anxious when he does not have structure and maybe that causes the OCD to ramp up severely. Not sure and I haven't yet figured out how to head this off...but I'm already dreading April!

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It's such a mystery. Sounds like several of us see timing trends with our kids. Makes me wonder in a way if its related to the time of year he was vaccinated. Who know I am just hypothisizing here out of desperation.

 

I too am dreading this time of the year, the symptoms linger until March. Exercise and sun does help some. I never heard of the treatment using those lights but I am going to look into it.

 

Thanks for the advice on the mouthwash will look into that as well. Also, on the teeth exacerbations our DDS recommended Xylitol Gum (SPRY) she says it kills strep on teeth.

I let him chew it like crazy because its Xylitol it helps prevent tooth decay and helps move the bowels and keeps an anxious child busy doing something.

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Hugs2day...can you share what supplements you are using?

Also, my dd has been ticcing MUCH more the past week. Wondered if it was due to exposure at her well check 4 days before, but who knows anymore. I don't have a bubble, and I can't keep them isolated. We do homeschool, but we are always out and about.

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Having flares during this time of year would be common, I think, based on the fact that this is the height of strep and flu season. I haven't noticed a pattern w/ DS, mostly due to the fact that I didn't know he had PANDAS until 2010. He had flares last Feb/Mar. He's had flares already this yr in Dec and now Jan, due to being exposed to strep. He did incredibly well this past fall. We'll see what spring and summer bring, now that he's post IVIG.

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I copy and pasted what I use on my kids from another document but here is the gist...all below are working well and I introduced one at a time and slowly to check for side effects. Its been nearly two years to get to this point. Supplements that did cause side effects were GABA (gave both my kids anxiety attacks) and magnesium sulfate cream (turned their skin red and itchy). Other than that my kids have benefited from every supplement below. I should mention also that their lab work showed they were low on Vit D. My youngest is now at therapy supplementation and my oldest a modest daily supplementation. Also a lot of the supplements are chewables I bought from Kirkman's.

 

Azithromycin daily

 

 

Vitamin D3 5000 mg daily

Vitamin C 1000 mg twice daily

Magnesium Citrate or Glycinate 1000 mg daily

Fiber- a scoop if eating apple sauce in the apple sauce

Aloe Vera Juice (occasionally)

 

Multi-Vitamin -daily Vitaspectrum

Enzymes with every meal

 

Singulair Granules 1 packet daily

Isoquercitin daily

Zinc 40 mg daily

Taurine 1000 mg daily

Fish Oil - Coromega packets

CO Q-10 100mg daily

 

 

Probiotics: Culturelle-1 capsule culturelle

Therabiotic Chewables -2 tabs

Kirkman Lactobicillus Duo daily (mostly use this one but add in one of the others to alternate probiotics)

Custom Probiotics - 11 strain

Probiotics must be 2 hours away from Antibiotics

Yeast:

Capryllic Acid (occasional)

Olive Leaf Extract (occasional)

 

Yeast die off:

Activated Charcoal (occasionally)

Alka Seltzer Gold (occasioally)

 

Pepcid (RX) if taking steroids to protect stomach. If steroids supplement extra VitD3 and Magnesium because steroids deplete them.

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Hugs2day...can you share what supplements you are using?

Also, my dd has been ticcing MUCH more the past week. Wondered if it was due to exposure at her well check 4 days before, but who knows anymore. I don't have a bubble, and I can't keep them isolated. We do homeschool, but we are always out and about.

 

 

Natural Calm Magnesium helped my ds9 tics some but nothing got rid of them until Pen VK. That so far has been a magic bullet for him. Keeping my fingers crossed.

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