tj21

We stopped, weren't seeing enough of a result. However, DH decided to try it for when he's super anxious, and it helps him. ds15 is on very low dose of Anafranil now. And we did IVIG in March 2015, now seeing more consistent results 3 months post, plus the addition of the Anafranil.

Funny, I just posted on another thread, including how Anafranil has really helped ds15. We have been able to have our dev. ped. prescribe and our pediatrician prescribe in consult w/the dev. ped. She (pediatrician) also will prescribe in consult w/our psychiatrist (when I can't get a hold of him, long story). I think you said your son is college-aged though, so not sure if his regular MD would be willing to prescribe in consult w/Dr. H, rather than a psychiatrist, for the time-being? Eg., someone needs to provide bridge-coverage if Dr. H isn't willing to help w/that transition, I'd hope. ~TJ

Glad to hear @nicklemama 's experience w/Lamictal, in same class as Trileptal and Topamax. We were going to go to Lamictal if Trileptal didn't work for ds15. Gradual increase is needed with most of these meds, but unlike the SSRIs and antispychotics needing to be uber-low doses (per Dr. Swedo), the anti-seizure meds can be dosed higher, at least w/our PANS child.

I'm so sorry. We had a 12-day psych. hospitalization for ds15 when he was 12. Then we had to place him in a thx residential center in Utah for 2 yrs. Unfortunately this was all before we had our PANS dx (SO glad you already have that going), so I'll just speak about our experience at hospital, and what is working now for us. BTW, we were not accepted at Rogers Memorial b/c ds15 has a developmental disability. X Depakote is the go-to for many in-patient facilities, which basically sedates the patient. Didn't help us long-term at all but was fine enough to give us some breathing room to figure out what to do next. X Celexa didn't help w/anxiety at all. X We'd previously tried Zoloft, Seroquel, Topamax (helped but it dulls cognition), Lithium, Risperdal, and many other meds., unsuccessfully. His current cocktail along w/a bazillion PANS supplements and Augmentin that is working very well: X Trileptal (anti-seizure med but helps mood stabilization, way less side effects than the antipsychotics) X Anafranil (old school tricyclic antidepressent) is helping w/anxiety and OCD. X Risperdal-M (rapid melt) PRN if things get really bad. It basically knocks him out. I wish the best for you. Sorry I can't speak to the 23andMe, though we did all the MTHFR testing as well thru another lab.

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.

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.

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.

OCD can also take the form of sort of a "cognitive OCD," repetitive thoughts/vocalizations, also driven by anxiety, not just physical rituals. Ds15 will ask over and over for reassurance, which is an OCD-like way of trying to "feel just right" (which is hard to maintain w/OCD). Our CBT works on above with us. Don't rule out PANS.

YES, I concur with others here - start abx while you figure out next steps. Add a good probiotic that doesn't contain strep (albeit 'inactive'), Klaire DeTox. We see Amy Smith NP/RN up in Sebastopol. She does phone consults but then it's out-of-pocket with insurance. She's been treating our son for over a year. PM me if you would like more info. Hang in there!!

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.

Agree re. CBT (and some do exposure therapy, or similar, as well)! We had a great therapist but then she moved to Vancouver. She was able to work w/ds15's cognitive disabilities, which many child CBTs here aren't experienced with.

also @trintiybella, we used NAC for a long time for OCD, hard to say if it helped much, so we tapered off of it early this year. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/

@powpow, thanks. That helps re. dosing experiences! Psychiatrist said to go up to 50mg (25mg 2x day) but I'm inclined to stay at 25mg. if it helps. Did you have much issue w/sunlight exposure and Anafranil? We use Risperdal-M (rapid melt) for rages/flares. It helps but then ds15 is a mess (groggy, eats everything in site) for a day.

Anxiety can exacerbate OCD and then visa-versa. ds15 just started Anafranil (SSNRI, low dose tricyclic antidepressant approved for resistant OCD) at a lower than therapeutic dose b/c of PANS (not as low as the 10th of a therapeutic dose Dr. Swedo recommends b/c our insurance only approves 25mg.+ capsules). If it doesn't help, we'll try a non-therapeutic dose of lithium. ds15 has tried almost every med. and type of med. with very mixed results. We're giving Anafranil a week unless he starts to flare badly (rages and puts holes in the walls).

ds15's MRI only found a sinus infection (ridiculously expensive way to find it) and he went on Amoxycillin for 10 days. Never had a strep swab. Ironically this was all before we had our PANS dx. I recall at the SF PANS Conference discussion that there was a small window to catch any actual basal ganglia swelling, or maybe it was that an FMRI was needed. Apologies for my vague unscientific citing though I'm sure it's on the pandasnetwork.org site, or maybe at NIMH.

Our PANS NP/RN specified Klaire Detoxification formula, which does not contain inactivated strep bacteria for ds15. I take Klaire Complete formula (has strep) on the advice of my FM MD. Which Klaire was your dd on? Oh, also dd20 tolerated VLS#3 when she was about 17 yrs. old (for IBS).

ds15 has high CamKII and normal T3/T4. All of his other Moleculera auto-antibodies were in normal range, BTW. I know there can be a correlation w/Hashimotos and Lyme and/or EBV sometimes. My TPO is very slightly elevated so we're keeping an eye on it.

How long (days, weeks) did you continue Benadryl, Tylenol or Ibuprofen post IVIG? (Apologies, I got tired of searching all the way back on forum to 2012 and didn't want to bump and old post.) Thanks! ~Tracy

Hi Q - ds15 has been using it for about 6 mos. per PANS NP/RN. We found this brand that is organic, tested, and taken after the calves have had what they need. At least per the mfg.; I wish I had a calf-cam. https://immunetree.com/colostrum/ Hard to say if it's helping his immune system given his declining IgG but it didn't seem to hurt either. ~Tracy

We just finished IVIG for ds15. In joint consult w/PANS NP/RN and ID MD, we did higher end of dosing, but not 2.00/g/k per NIH Study: Day1: 1.00g/k Day2: 0.75g/k We've done boatloads of labs (8-10 vials at a time!) but not a complete immunological workup yet. Due to PANS symptoms (severe w/several psych. hsopitalizations) we decided to do IVIG to treat PANS "only." Ds15 does not have CID or CVID but has low IgG and we don't yet know why it is dropping, so will pursue all that in about a year; team thinks he will retain IgG for about 11 months but we'll be tracking it. ~Tracy

Hi @pollywog - below is the link to the big IVIG thread on this forum, which I re-read last night. We're in our 2nd day of IVIG, so too early to tell anything. It does really sound like it depends on so many factors that each child reacts differently. http://latitudes.org/forums/index.php?showtopic=21753&hl= Good luck at Stanford! ~Tracy

@Sonshine - You too. We'll be going to either UCSF or Stanford in a year if we need immunological workup. Will be interested to see how you like Dr. Lewis and the team at Stanford. You too, it's such a long road! Tracy

Cross posting here (my thread re. insurance approval for IVIG): http://latitudes.org/forums/index.php?showtopic=23585&hl= We canceled the pneumovax23 last Friday b/c IVIG got approved by our insurance and scheduled for TODAY and TOMORROW (!!), so we wouldn't be able to retest titers for immune response after the IVIG. If we don't have sustained improvement, ID MD wants us to get full immunological work-up in a year before more IVIG. Also, turns out ds15 did have Rubeola (measles) antibodies, just not for Rubella. And not for HepB. Still had antibodies from other chiidhood vaccines.

ID MD just called - we got insurance approval, and for the high dosing!!!! I can't quite believe it, since I've become so cynical about the system. Scheduled for Tues.-Weds. 3/3/ and 3/4. WOW.

Thanks, Kim. We did discuss all the tests prior to running them, plus included the prior boatloads of test results from our PANS NP/RN (including CD8/CD57, no CD4). I think our ID MD just ran HIV to rule it out for insurance. Consensus between four of our practitioners, and us, is to move ahead w/IVIG as soon as possible. Also we are doing a high-dose 2-day course, not the "standard" non-PANS lower repeated doses. For a first pass at any rate. @sf_mom - glad you mentioned tracking IVIG levels, I realized we have 3 sets, each level lower than previous (March 2014, Nov. 2014, and Jan. 2015). ~Tracy