tj21

DS16 has been on clonidine for years (originally b/c of tics). It does make him sleepy though he's adjusted over the years. 0.10mg. is a relatively low dose. At times one of his doses has even been half a tablet (tiny!!) 0.05mg. Ask your MD if you can start w/that instead. I think the main issue of going off of it is to taper b/c it's a blood pressure lowering med. Sudden changes might mess w/BP. Again, at only 0.05mg or 0.10mg might not be an issue. It's helped DS16 a lot, though he has a host of other issues going on, not just PANS. Tracy

Not sure with those specific abx's. Ds16 has been on 875mgx2 Augmentin for 2+ years, and at times also 3x/week or daily Azithromycin and additional 500mg. daily Augmentin when at overnight camp (tons of kids). His sister just tested neg. for strep, but she's in college and away most of the time. Our probiotic protocol: 1 Florastor 2x/day WITH the abx, 2 Klaire Detox at bed. So far so good. We are also GF.

Look in to Amantadine. We weaned ds16 off all stimulants and are having moderate success with Amantadine. Some, but not all, of the ADHD for him is definitely related to PANS; brain fog and tics, which have subsided w/that end of treatment.

When your PANDAS specialist did a "thorough evaluation," did you do a Cunningham panel? And are any other symptoms present (bedwetting, OCD, behavior, separation anxiety, etc.?). DS16's tic trajectory is similar to yours, and we have a family history of OCD, and tics but not in immediate fam. So he's always had a TS dx. But I remember the day he ticced straight for 12 hours (yelping every few seconds), it was so dramatic and that didn't seem like TS to me. He was sick around the same time. His tics got so bad over the years, especially the neck jerking, it was scary. We also tried 10 days of antibiotics, which is not enough if it's PANDAS. Anyway, finally connected w/a PANDAS specialist in 2014, and when our Cunningham results came back, everything was in normal range EXCEPT CamKinase II, which is indicated in tics!! After 2 years of intensive PANS treatment DS16 is much better, tics only present when he's really anxious or stressed, or flaring. Neuropsychiatric symptoms have calmed way down. Allergies are a trigger for us as well, in terms of other PANS flaring symptoms, but not so much tics anymore! Good luck!

Our integrative medicine PANS practitioner had us use a Pharmasan urine testing kit. I think it was covered by our PPO insurance at the time (UHC) but I needed her, practitioner, to interpret results for us and recommend supplements. L-theanine has been most effective (calming) but now I forget what it's targeting (sorry too much info-overload for this mama/honorary social worker!).

We got high dose IViG (1.75g/kg) covered by our PPO (UHC); the hospital ID department handled all the pre-authorizations. Ds15 (now 16) has hypogammaglobulemia too, and I think they used autoimmune encephalitis as secondary dx but not sure. His ID MD, who did the procedure in the day hospital (over 2 days) said the high dose is typical for other autoimmune issues, including Hashimotos. Unfortunately we had to switch insurance, so are going through authorization all over again for a 2nd IVIG, and haven't yet heard if it will be covered or not.

I have to sign in 2x, and then I have to navigate back to the Topic I'm trying to comment on, so I just submitted a Support Ticket (under Contact Us). It's been this way for awhile, now that you mention it. Tracy

We did not have headaches or nausea after ds16's first IVIG (1.75g/kg over 2 days). Our practioner did mention that the more "standard" lower IVIG dose for immune-deficiencies, vs. autoimmune issues, can actually trigger PANDAS/PANS symptoms rather than jump start the immune system to fight the inflammation. We were prescribed Zofran post-IVIG in case of nausea/headache. The half-life of IgG is about 3 months, so there will still be IgG in the system after that. DS16's IgG levels contine to drop, so we're going for 2nd IVIG (2g/kg) about 9 months after first. DS16's symptoms did improve (brain fog lifted, behavior calmed down, almost no tics) but as @dasu mentions, hard to separate out from all the other stuff going on, including meds., supplements, puberty, etc. Our ID MD and Immunologist said generally with other autoimmune encephalitis type diseases, if the high dosing IVIG doesn't help after 2 tries, we move to steroid bursts and some other therapies.

Yes! I often joke that I need a wife (I know, I know, another "parent" is more appropriate!). We use care (dot) com and recently found a couple great "aides." Mostly to mentor our son, but in the past I've also specificed household organization as well, which they did when ds16 (younger at the time) was self-occupied. One of our previous aides did some of the legwork (phone, paperwork, filing) for me w/various agencies and medical ins. stuff I was dealing with. I got as specific as possible about what I needed, including for my PANS ds16, in my ad. Good luck.

We use Nature's Way Activated Charcoal, but other brands are probably fine. We only use it if there's a "flare," in dosing I mentioned previously, not regularly, so not sure re. timing w/abx. Azithromycin is broad spectrum so will get lyme microbials then the herx/die-off. Augmentin does not go after lyme, so no herx/die-off with it, thus it's the first line for PANS/PANDAS (to go after the strep or other bacterial infections), is my understanding. We just added Azithromycin a few months ago, after 1.5 yrs. on Augmentin (still on), but I haven't really seen a herx reaction w/ds16. Also, our practitioner said Klaire Complete contains strep, though inactivated, so Detox is preferrable.

Agree it could be die-off (Herxheimer reaction) w/Azithro. We also use activated charcoal (1-4 caps 4x/hour for first 1-2 hours) and ibuprofen, as @emst mentions. Also, make sure she's on a good/tested probiotic (we use Florastor WITH the abx, and a night chaser dose of Klaire De-tox). Hang in there.

In Northern CA, have you contacted Amy Joy Fishman-Smith RN/NP at Pacific Frontier Medical 650) 474-2130?

ds15 was supposed to get IV fluids before the actual IVIG, which helps, but didn't. We were lucky and no headache or nausea. MD said steroids would be used for headache, and also prescribed Zofran for nausea just in case. See if your MD can help!

I just re-read this thread (oy!). We are considering trying again w/ds16 for anxiety, and some calming would be nice around here. Have had to call Crisis Team 2x recently; we're 6 months post-IVIG so effects could be wearing off. What are your current dose levels for someone approx. 140#, 16 yrs. old? DH has been taking 15 drops 1x/day and reports that it's helping w/anxiety A LOT. We'll stick w/Bluebird Botanicals' CBD Oil 250mg, same as last year. Thks!

ds15 had first high dose IVIG March 2015 and we'll be doing a 2nd Nov./Dec. this year. Originally the first was to "jump start" his immune system, which I thought was the initial idea w/PANS or PANDAS. However since the half-life of IVIG is only 3 weeks, after a few months, in our case he was back to his low baseline (well, slightly higher but still low). He qualifies for insurance coverage due to hypogammaglobulin. We're in the middle of working w/the immunologist, ID MD, and his PANS practitioner to get on the same page, but expect to do the higher PANS protocol, not what would be used for frequent regular IVIG treatments. Fortunately we had good results (more noticeable after about a month) with the first IVIG.

I'm sorry you're going thru this! (Yes, I have PTSD too, from a childhood trauma AND ds15's PANS issues.) For me (b/c obivously don't know how old you are), menopausal hormonal fluctuations had a huge impact. Once I started a topical progesterone cream, sleeping has been more continuous. Before that I was waking up every couple of hours. And then eliminating my midday coffee (a.m. cup is still okay, fingers crossed), not even decaff. I was skeptical at first, but after a few weeks I was sleeping much better. I'm drinking afternoon Teecino (herbal coffee, no caffeine) as my placebo coffee.

Welcome! I don't know about the FDA approval. Here's an older thread re. insurance. If you search the forum there might be other threads as well. http://latitudes.org/forums/index.php?showtopic=23585&hl=

10mg. Atarax. He was 12 at the time, maybe 100#. Psychiatrist said we could go up to 30mg/day. Benadryl (25mg.) worked/s better, not as sedating as Atarax. I don't like to give ds15 anything w/pseudoephedrine b/c it's stimulating and would also keep him awake. Maybe it has a paradoxical effect for some kids?

I forgot that Benadryl and Atarax (stronger antihistamine, similar to Benadryl) helped ds15 the most w/rages (what I realized now are "flares").

@fallingapart - at first his mood was stabilized and we had fewer rages. Side effects were weight gain but using it did buy us time. I do think his PANS exacerbation was around the same time it stopped working, complicating things. Sorry the Trileptal didn't help.

No jinxing here! Cooincidentally I just saw ds15's PANS NP/RN and she wants to test for Zinc, Iron, Folate, and some other minerals. White blood cells are good. But his protein levels are very low and she connected the dots for me re. low IgG (protein!!) and the need for protein from meat sources (we eat very little red). So, ds15 will be thrilled to eat more hamburgers and steak tacos. We've found that Country Life's Complex B formula is good and no flushing reactions (B-3??). ds15's igG is still low after March IVIG so we're due for a 2nd in Dec.

ds15 was on Abilify with success for about a year at age 10 (??) but then it started to have a paradoxical effect, where he was almost bipolar manic w/rapid onset episodes. His child/adolescent psychiatrist at the time said Abilify is actually nicknamed "Abili-FLY" because of this reaction. Seroquel didn't help other than sedate a bit and make ds15 irritable. We are now on an anti-seizure med, Tripleptal (same class as Lamictal), with the best success in years. That and aggressive PANS treatment of course. Proceed w/caution would be my advice. Good luck!

In our case, the Moleculera Cunningham panel for elevated CamKinaseII indicated PANS, not TS for ds15. Though I suspect there might be some low-level tics that could be dx'd as "TS" since he had several tics at same time in preschool (pre-PANS onset). His tics are very infrequent now, and prior to treatment we had severe head-jerking and loud constant yelping, among other tic-related issues. Some OCD still present, when anxious.

@lkaanda - I hear you on the out-of-pocket expenses, it's so stressful. 5000.00 total for IVIG (high dosing?) is a good price. After we did the Cunningham, I was actually relieved to see that ds15 TS dx might be PANS-related. Re. allergy shots: we are controlling most w/PANS supplements, changes in diet, and home mold abatement. Would like to get them for dog and horse hair/dander b/c we do thx. horseback riding, and are contemplating a thx. companion dog.

Did you do the Cunningham Panel? CamKinase is associated w/tics, and in our case ds15's was elevated and we've had a huge reduction in tics with current PANS treatment, and even more so after IVIG (March 2015). But we mainly did the IVIG b/c his IgG was so low, he needed a boost to continue to reduce inflammation and other PANS symptoms. He still carries a TS diagnosis and only time will tell if the tic disorder is only PANS or just PANS-aggravated TS.