tj21

That is so frustrating to hear about Kaiser and your MDs response. Check out http://www.amyjoysmithnp.com/, who practices in Redwood City, CA. She just presented again at the PANDAS Conference at Georgetown in DC. She has been treating ds17 for about 4 yrs. now. We've been fortunate that most of our other MDs have not dismissed PANS/PANDAS, and have even said "I've seen a few cases" (not treated any though). From what I hear it's difficult to get into Stanford for actual treatment, anyway. After our initial consult and occasional office visits, we've been able to do phone consults (not covered by ins. but you're going out-of-network anyway) which is better than driving south and waiting. Also, http://www.drschweig.com/ might be of help, he's in Berkeley, CA. Feel free to PM me as well. Good luck.

We've gone as long as 2 weeks, I think. Fortunately his gut is okay so far. We do 2 probiotics as well. Our NP thought the Cyflacalm drops were better than the capsules, so we used to use the drops. I know, it sucks, I have an entire spreadsheet for med-fills b/c it got so complicated, and we have to break up the morning and bedtime meds into 3-batches, there are so many. Like 15+ supplements, and 8-10 prescriptions, 5x a day dosing. Plus drops, including Cellfood (that might be good for inflammation too). Edit: Also, we take Glutathione for liver stabilization. Liposomal is best, but it's expensive, so sometimes we use regular Glutathione. DS17 liver enzymes normalized after starting these.

We've had to use combinations of all of above, switching it up every 6 months or so. I give 800mg Ibuprofen (DS17 weighs 150# though) during flares. Also we've been treating for 3+ years, so he's been on combos of these things for a long time. I think detoxification has to be worked on along with just controlling inflammation. Are you doing liquid Cyflacalm or capsules?

vvny - Don't know about Anti Tubulin (DS17s other results were in normal range on Cunninghame), though found this here : http://latitudes.org/forums/index.php?showtopic=21064.

We had a TS dx when DS17 was around 8 or 9 yrs. old and I'm not ruling it out, however only his cAmKinase II levels were elevated on the Cunningham. Is this same for your son? Our PANS NP said she sees this with tics and that it's usually not "TS." We haven't re-tested, but after PANS treatment for 3 years, we have long periods of NO tics (3-4 mos.) until a flare occurs. Hope this helps re. your original q. Tracy

I second the toothbrush replacement, or run it through the dishwasher. Years ago DH had recurring strep infections despite antibiotics and MD said to make sure toothbrush (and cups, etc.) are sterilized to avoid reinfection. Good luck! (My PTSD kicks in as soon as I see/hear any tic increase w/DS17). "Canary," that's a good analogy.

We just switched from daily Nystatin after 2.5 yrs. to to 3x/week Fluconazole. PANS provider felt it might be time to switch. There's also a Nystatin rinse that might get the oral thrush but I'd think oral (tablet) Nystatin would get it too. Also on Liposomal Glutathione and MedCaps DPO for liver support. So far so good after all this time...

My brother tested negative w/Igenex. He's a retired park ranger and asymptomatic but wanted to rule it out.

Re.: "He still has extreme tics going on. Nothing seems to help him much ....I am so worried how he will be able to handle once school re-opens .I have become a nervous mess myself going through all this in summer ! Any pointers on what our next options should be ? Is the cunningham report conclusive of PANDAS/PANS (high on one of the bands) ? " In our case, CamKinaseII from the Cunningham Panel was elevated and indicated in tics. He was in normal range for all others, so we have a PANS dx, cause inconclusive. I will say that when ds16 flares up, his tics are the first sign, then behavior deterioration. That said, we are staying on abx (Augmentin) for now, b/c everytime we go off, we have a flare.

Yes, "press 0" for Amy Smith. (abbreviation for extension 0). And yes, NHS is similar to what I was referring to.

Yes, same number. x.0 is Mike, her assistant. (usa)+(650) 474-2130 x.0 Not sure re. Environmental Med. and I forgot you have a single-payer med system there, so maybe more difficult to get non-standard providers. Glad you have a sympathetic MD though.

Not sure how long her wait-list is. What about a Functional Medicine MD in the UK (do they have those over there?), that's helped the most w/my Lyme and other inflammatory issues.

Hi - We see her. I didn't realize she had her own website with a contact form. The main office site is: http://www.pacificfrontiermedical.com/ When you call the office, leave a message at x.0 for Mike, her assistant. I don't know if she's still doing long-distance phone consults. Yes, she was on vacation during the above-mentioned dates, so I would imagine she's even more backed up now. Especially since there are so few knowledgeable practitioners here, and Stanford Hospital is even more backed up. Good luck!

I'm sorry to hear all this, it's so tough!! DS16 had severe tics starting way back, sometimes every 10 seconds, including copropraxia and coprolalia. Once we started PANS treatment things subsided and now when he has a flare (esp. after sleep-away camp), we can usually stabilize again w/extra Augmentin. I see that's not an option for you but the Trileptal or Lamictal is a good option; Trileptal has really stabilized my son's mood swings. Also DS16 does not tic at night unless he wakes up. The "seizure" tic sounds like dystonia, which I had after a reaction to a med., years ago. Does your daughter remember them after and/or can describe them ? Our most recent flare (2 months long, including loud yelping tics 10/minute all day long) correlated with an extremely elevated c4a level, and when retested a month later after the addition of a THIRD antibiotic, levels had normalized along with near-absence of all tics. Best, Tracy

We have not tried Valium. I think it stays in the body longer than Ativan... What about trying the homeopathic remedy "Rescue Remedy" ?

Yes, Ativan caused a 'paradoxical' reaction in ds16 (he was maybe 12 when we first tried). It made him so disinhibited that his tics got way worse, and he was silly and more hyper than usual; and didn't help w/anxiety at all. We tried again this year and he did tolerate it better, but we've also been in PANS treatment for over 2 years with great success. Seroquel (and every other med practically) did not help, but then again not much in the antipsychotics worked for very long unless it just knocked him out (same w/Risperidone, which we use just for emergency "flares" now). Tracy

We've used CBD oil from Bluebird Botanicals off and on. It helps at times, but not during a flare, for us. 15 drops 2x/day for ds16 who weighs about 160#. My husband takes same (weighs less) and says it helps him but he doesn't have PANS. Older topic here: http://latitudes.org/forums/index.php?showtopic=22539&hl=

So sorry to hear, @wisdom_seeker. Will you appeal (if time)? We were fortunate that our ID MD got us approved both times; she said she routinely does high dose IVIG for other conditions (though not autoimmune encephalitis); she also did not put PANS anywhere as a dx since we already know it's excluded from any medical treatment right now (no ICD/dx code exists). Good luck!

Our other dx was for recurrent aphthous mouth ulcers and sinusitis as @philamom notes too. We also had a 1.5 yr. lab report history of a continuous decline in total IgG numbers. Tracy

@mybabyo, any progress? We are still experiencing a horrible flare, with horrendous tics similar to when this all first started. ACKKK!! Still waiting for lab results and to consult w/our provider (but we've been away for a week) to see what we can do to get back to 'remission baseline.' It's so upsetting since we were making such good progress. Maybe it's hormones too? Tracy

Sorry, was without computer access this past week. Hope you've made progress w/insurance already. Re. "which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms? " -Below range total IgG, subclass 1; other subclasses were at very low end of the lab's (Labcorp) range. -Got ins. approval before we had time to do the pneummovax challenge -ds16 doesn't have hepB coverage despite the vaccination series, so we have to repeat this fall PM me if you have more questions! Tracy

Hi, We had to use hypogammaglobulanemia (sorry, sp. is incorrect), basically low IgG and illness/symptoms. We got 2 high dose IVIGs approved (UHC, then Anthem BC). See previous thread: http://latitudes.org/forums/index.php?showtopic=23585&hl= Good luck! High CamK II for us also, and tics are back in high flare right now, so figuring that out now... Tracy

I was just thinking about this also. My son (16) flares (tics mostly, sometimes other behavioral stuff) pretty consistently after he returns from a sleep-away camp (monthly, and summers). In general, he'd been doing pretty well 2 yrs. into PANS treatment. So, is it 1) being around many others who no doubt are either strep carriers or have a virus 2) mold and other environmental factors at camp 3) anxiety, or some combo. of those. Doing more labs next week to see if we can catch anything, continuing to work on boosting his immune system, and doing any extra dose of antibiotics as prophylaxis when he's at camp. Obviously you can't do this if your son is around family all the time. I do think my son holds it together with others and lets it go (so to speak) with those he's comfortable around (family).

How much does Igenex charge to test a tick ? Good point, since I had Babesia, local county agencies would not have found it...

If you saved the tick (body especially) you can take it to your local Vector Control or ID county/city department and they can test it. Or you can ask your MD about a course of antibiotics just in case. I'd try former if possible. Sorry to hear!! Tracy