Flare in response to others strep

[JoyBop]

Does anyone else have a child who goes into a horrible flare after being exposed to someone else with an active strep infection? My son was doing quite well in recovery for many months. Then we went bowling with his friend, who seemed fine at the time. The froend broke into a high fever later that evening. Thenext day the mom called to say he had strep.

 

My kid has been in a horrible flare since that day. In addition, last Saturday we had a repeat of the same scenario. A child was at our house and fine. He left and our son freaked out with unbearable panic, ocd and strange behavior s like we haven't seen in a long time. The next day I heard that boy was sick. I asked the mom to take him for the strep test and sure enough it was positive.

 

Now my son has been exposed to two strep infections prior to their having symptoms. does anyone else experience this? And if so how long does it last! It's been 8 weeks since the first and one week since the second exposure and no signs of getting better.

[tj21]

I started to wonder about my ds15: after he comes back from respite camp (2 nights) with about 100 other kids, he seems to flare pretty badly. We thought it was just from being back home and not wanting to leave camp, but now I'm thinking out of 100 surely someone was either a strep carrier, or had an undiagnosed infection.

 

I'm considering a higher abx dose (Augmentin, to 1500mg./2x instead of 1000mg/2x) for camp next weekend.

Edited May 9, 2015 by tj21

[JoyBop]

That's not a bad idea for the short term. I would imagine there are very close quarters at camp and for whatever reason, strep seems to be going around.

[awilliams74]

DS 11 definitely flares when around others with strep. At least twice in our house, it was the only reason we tested the rest of us and found strep. His last "blip", he was able to tell us someone at a party at our house must have been sick since his OCD was acting up, but he knew it wasn't a family member since it was mild. During a flare our MDs have always increased his antibiotics from prophylactic dose to treatment dose.

[JoyBop]

Thanks aWilliams! It was only a blip? I'm just trying to make sense of this because it's been two months and two strep exposures and things are escalating.

[awilliams74]

His first year of treatment and prophylaxis for strep had quite a few flares. He would reach 80-85% recovery at best. I considered a flare to be an increase in symptoms, mostly anxiety and OCD, never as bad as the initial "fall of the cliff" but some were pretty close. The "blip" I have seen previously described as only a mild increase and in our DS's case, it was only 2 days and we could pretty much talk him through most of it. I don't believe his true recovery started until there was further testing which revealed an active mycoplasma infection (for how long who knows) and chronic sinus infections - this was over a year into treatment with azithromycin for flares and Keflex for prophylaxis for strep. Antibiotics for sinus/mycoplasma started (biaxin was the only thing to rid him of OCD - the other antibiotics and CBT made it manageable except when in a flare, biaxin got rid of it). I am holding my breath this allergy season though since that is a piece of his puzzle and has caused flares in the past. Our biggest relief from flares prior to the mycoplasma discovery, was when our entire house was treated for strep (and retested after), including the cat - he wasn't retested though:-). Then he was free from flares except the "blip". It's getting late, I hope this makes sense.

[JoyBop]

Thank you! That all makes perfect Sense and I can totally relate! We have done all the testing and had his tonsils out which I believed was very helpful. We need to retest now and hopefully get over this two month flare.

Thanks again for responding.

[awilliams74]

Good luck, I know how disheartening and exhausting for everyone flares are. I still hold my breath with every little step over a crack, throat clearing, etc.

[tj21]

Update: ds15 camp back from 3-day respite camp with a huge flare, despite the added 500mg/day Augmentin. UGH!

 

We started our usual: Coptis Purge Fire, Ibuprofen, Charcoal. PANS RN/NP is keeping him on the additional Augmentin for 2 weeks (so total 2500mg/day).

 

Day 4: flare is calming down finally.

[WorriedDADNMOM]

In a word.....Yup!!!! Really we sometimes notice it within minutes of exposure. I have two kiddos that tic(used to) around a boy diagnosed with TS and other known strep infections. It really is uncanny when it happens. They are both now on PenVk prophylaxis. Flares seem to be more milder than a few years back. However, they are still noticeable with some emotional lability and anxiety/fears. I would say this goes for viral infections too.

 

I think anything that can be done naturally for immune support would be huge help. Vitamins, minerals, anti-inflammatory, probiotics(esp on abx).

[tj21]

This was including his usual protocol of 25+ other meds/supplements (the camp nurses are really good about administering it all, I might add!!). We're also only 2 months post-IVIG so it will all take more time. Flares are much less severe for us so far, also.

 

 

I think anything that can be done naturally for immune support would be huge help. Vitamins, minerals, anti-inflammatory, probiotics(esp on abx).

[dasu]

Question - how long does a flare to exposure last (without getting sick themselves?) Strep has been circulating through the schools but our kids play sports and have been exposed. We notice an uptick in OCD, ODD etc.

 

I keep hearing about another concept as well from other PANDAS parents - PANDAS kids get sick but either dont show it or the disease somehow progresses at a slower pace. I havent seen any evidence of this from literature.

[tj21]

ds15's flares last a few days now (been on treatment protocol for over a year). We have our flare arsenal of supplements at the ready.

His immune system was suppressed (uber-low IgG numbers), as it is with many PANS/PANDAS patients, so often would not mount any immune response whatsoever to viruses or bacterial infections. Instead all the toxins and germs are just sitting in his system causing chronic inflammation among other things that I'm not explaining very well here... Now that he's had IVIG, he had his first cold in ages, and weathered it well.

[mrinirags]

I saw coptis purge fire mentioned.  Does this help with Pans flares?  Thanks.

[tj21]

7 hours ago, mrinirags said:

I saw coptis purge fire mentioned.  Does this help with Pans flares?  Thanks.

It used to help, but we just couldn't sustain a good baseline. Last year DS18 (!) was flaring so badly, we did a 3rd high-dose IVIG, with monthly low-doses for maintenance, with good results.