EmilyK

We also do a modified GAPS at home. No one has gluten issues so one compromise is organic spelt pasta sometimes when we want to vary from the brown rice pasta. I try to keep pasta down to 1x a week. I also use the Ezekiel sprouted grain/lentil bread for the kids' sandwiches as school. That's the only time they get bread though. Otherwise we're heavy into fruits and vegetables, fish and meat (pastured and organic, no feedlots, no hormones), fresh eggs, nuts/seeds, kefir. Mashed potatoes half made with cauliflower is a rare treat. I grab glutenfree mac and cheese to satisfy that craving once in a while. No hydrogenated oils, mgs, high fructose corn syrup, food coloring, preservatives. We go for the 80/20 rule and the 20 only happens when we eat out 1x a week or every two weeks. We're lucky to have a gluten free organic bakery less than a mile away and a local place with homemade icecream free of junk. My son hasn't had belly issues despite all the antibiotic, and my husband has lost 40 pounds!

My son also gets allergic shiners but not the usual histamine response. He tested positive for dogs, dust, mice, and mosquitoes on a skin test. He's terrified of shots and singulair is a no go for OCD and anxiety. I don't see much response from allegra. We're going to try Zyrtec whenever he's around dogs (everyone we know has them). We also have mattress/pillow dust cases and an airpurifier which helps a lot.

Agreed with all of Dedee's points. Biaxin, Zith, and Doxycyline were all used in our family (4 of us with mycoplasma). One son on Zith since October cleared it when checked in Feb. He's continuing on Zith. I did a month of Biaxin and a month of antifungal with a two week taper of prednisone back in October and needed more Biaxin just recently. Very tough to clear! It manifested as upper respiratory, GI, joint pain, neck pain, ear infection, etc. Best of luck! Emily

I have UHC in RI and our appts, bloodwork, meds are all covered with Dr. B so far. We'll have to fight for IVIG I'm sure.

I've learned with four of us having mycoplasma that it can present very differently from person to person: leg spasms and GI issues in one, leg pain/fatigue/off and on rash/slight cough in another, sinus/throat infection in myself and other son, then later I got the leg pain and GI stuff. It is definitely hard to get rid of!

Similar to airial95 we see pros and cons and it goes against my original parenting inclination of strict screen time limits. My son definitely gets obsessed over them but they can really help manage a flare and expected anxiety-provoking event. We do limit time on phone games, the kindle, the xbox but we also encourage learning games and typing work. It's a great incentive too. For example, I always bring the kindle to dr visits where we will have a long wait since that would surely provoke an anxiety meltdown if not managed.

We buy Lifeway Kefir and my boys love their "smoothies" and have no belly issues even with all the abx and ibuprofen. Emily

Well, my DH is Canadian so maybe we need to move up there with the rest of his family! Lord knows our two purchased big name American insurances won't pay for it....

Which flavor Barleans do you use? We have the lime and my son spits it. The other flavors seemed to contain omega 6 and 9 but lime and one other (forget which) did not. Of course, this is the 7th omega 3 supplement we've tried that he hates....

Excited to read about anatabloc and we may try that next. Prednisone give ds an instant holiday from ocd, anxiety, hyperactivity, lack of focus. Just as he got to the end of his taper, dh got norovirus and then 5 days later influenza B. So ds is right back in a flare up. So much for any lasting prednisone effect. However, since he does so well immediately while on the prednisone, it shows me the very clear role of inflammation.

You mention a "problem with M. Pneumoniae antibody" so is that mycoplasma? That's a trigger for my son in addition to strep.

We haven't gotten the flu shot last year or this year. My youngest non-PANDAS just came down with flu Sat. and started Tamiflu - fine and back in school Tuesday. The rest of us started Tamiflu Monday to be safe. Doing pretty well so far...

We didn't get the flu shot last year or this year. This year, my youngest (nonPANDAS) caught the flu - just today actually and is on tamiflu. The urgent center dr said not to listen to the crazy news media with all their fear-mongering. Plenty of rest and fluid and he'll be aok was his comment to me. The rest of us just dosed up on oscillococcinum and elderberry.

That's great news for 2013!

No, haven't heard of him, but keep us posted!

Dr. B said that my son's allergies can exacerbate his situation - adding inflammation to an already inflamed system. I now add notes about known allergen exposures to the daily log I keep, now that we know he's allergic to dogs and mice as well as the dust and mosquitos.

Yes - I try to keep reminding myself that first and foremost he's just a kid too Sawtooth healing - I'll take it. Such a better spot than last winter and spring! Happy New Years to you too

I'm really pleased with DS' progress this past month. Once in awhile we have a day or half-day of flare up - hypermotoric, appetite/sleep issues, some OCD but to a lesser degree, minimelt (20 minutes instead of 2 hrs), and then he's fine later that evening or the next day. It's like really fast flare ups. Is this common? I wonder if it's a briefer reaction to an exposure now that he's on a good treatment plan?

My goodness, I love arnica but hadn't ever thought of trying it with PANDAS. Makes a ton of sense though! thanks for sharing

I'll have to research the KPU - not familiar with that. He's 48 lbs and taking Jarrow formulas zinc balance 15 mg zinc and 1 mg copper.

Maybe it's coincidence, but after a week of extra zinc supplementation I got an email from DS' teacher this morning about the great week he had with hard work on his math and writing (previously very poor subjects). Paying attention the week before vacation is tough for any kid I think, but for him to show an improvement makes me so happy. Augmentin + Zythromycin + Zinc is making for a nice equation So greatful for the good advice here, Emily

We see memory issues too. I can't wait for that to get better. For now I'm glad we have the OCD and rages and anxiety in control.

My son gets that restlessness, can't stay in one spot, and sometimes complains that his fingers and arms feel like bee stings. Right now with the double abx for strep and myco, it's better.

Good reminder on the combo products - hard to sort out what causes what!

Well zinc is easy enough to try! Thanks. Was weight are your kids and how much do you give? My son is 48 lbs. The USDA guidelines say about 5 mg but I wonder if that is low-balled just like most other vitamin recommendations that they give?