tj21

Hi Kim, Did you mean it's not a good indicator for insurance? Yes, he had standard course as infant and is 15 now. We didn't do a challenge vax as there are some concerns from our PANS practitioner about revaccinating and making his PANS worse. Our ID MD was mainly concerned w/HepB if HIV was implicated (negative), I think. Have to look at my notes. Since our urgency is really to treat the PANS w/a higher dose of IVIG (1.5-1.75g/k over 2-days) than immunology would use (lower, more regular frequent sessions), the consensus was to forgo a full work-up, but revisit that in a year after the initial IVIG. Thks, Tracy

Great, thanks for the help. We have all the IgG Subclass results documented. We are going to do the pneumovax23 response challenge while we wait for word from insurance. If they approve, we'll skip the titer re-test unless there's time before IVIG. My son also didn't have antibody protection against Rubella or HepB (but did for Rubeola, fortunately). So there are other immune irregularities. To be continued...

Hi experts, I searched this forum re. getting insurance approval for IVIG and asked on an older post that was for AE; our MDs say that's out b/c it's not anti-NMDA AE, so I thought I'd try to be more specific in my question here. I'm preparing my insurance appeal in case UHC denies coverage for out-patient 2-days of IVIG, although they've expedited the review process. Questions: 1. How did those of you who had to appeal your insurance's first denial of IVIG (for hypogammaglobulinemia) approach it, eg. did you list PANS/PANDAS as a dx ?we were told by both our PANS NP/RN and ID MD that we can't b/c it's not in the DSM or clinically "accepted" yet, but now I think I can include the JCAP Studies! 2. What other evidence besides clinical history of frequent infections and long-term antibiotic use did you cite? We were also told we can't cite the Cunningham/Moleculera results b/c it's still considered an experimental, non-FDA approved, test. Thanks! Tracy

and @Quannie - is elevated auto-antibodies on the Cunningham/Moleculera panel enough for "antibodies found on the brain" ? Or are there more tests I should ask our ID MD to run? We're waiting for insurance approval (UHC/PPO) for IVIG but preparing for an appeal as well.

We just started down this path, originally for IVIG (very low numbers) and new ID MD tested for vaccination response. Ds15 is negative (is that same as no titers??) for MMR and HepB so far. I was shocked as I'd not even thought about this as a possibility for him. Waiting for other results. Of course this is alarming given the measles outbreak in CA. Not sure of protocol in our case for re-vaccinating or just moving fwd. w/IVIG (week of Feb. 16th). I went thru similar w/my ID MD but mounted an immune response to the vaccines she tested, so no IVIG for me right now.

I did! And I was simultaneously optimistic and discouraged - that there is so much new research going on and that the brain doesn't really mature and form all the myelin and connections to the frontal lobe until the 30s (though I already knew this). Good news, bad news .

Do you want a pediatric hospital for medical care, or a psychiatric in-patient situation?

Hi @lookingforhope, Amy has suggested IVIG for my son too (his number is just below the low end of the range). I will be curious to see how it goes if you decide to pursue it. She's also suggested trying to provoke a lyme immune response, though all the labwork has come back negative. We've decided to hold off on both since he's improving for now. TJ

Wow, sorry that happened. pandasnetwork.org has a list of practioners, which is where I found our Integrative practitioner.

We tried to get in with the one expert child psychiatrist in our area for 2 yrs. and finally did this year - he's helped immensely, more than our dev. ped. was able to. He also believes in PANS and is up on the research. Mind you, ds15 has a complex neurological/dev. disability profile also (not all caused by PANS). Benadryl used to be our go-to also, but less effective as ds15 has gotten older and stronger. Integrative NP works on controlling inflammation, autoimmune issues, herbs for calming, de-toxing, etc. Some of what you are already doing it sounds. We are holding off on steroid bursts and IVIG for now since he is improving. Working on boosting his immune system (elderberry, colostrom, Beyond Balance formulas, etc. etc.). We researched the child psych. units in our area (only a few choices), picked the best one where we had full access to ds15 and the treating staff. Still not enough, since PANS was happening and all the pscyh. meds. don't work same way as in mental illness without PANS. And they tend to over-sedate, b/c what else can they do in only 10-12 days?! Don't get me started about our mental health/healthcare system.

Very sorry to hear what you are going through. ds15 had a psych. hospitalization where they really just over-sedated him w/Depakote. Med 'balancing' was kind of a joke and he was undiagnosed PANS at the time, it turns out. The main thing was that it gave us a 12-day break to try to regroup and figure out next steps for our family. Fast forward 2.5 yrs. later and PANS treatment since March 2014 where we occasionally have to use Risperdal-M (rapid-melt pills) 1 or 2 mgs. for uncontrollable violent outbursts but don't have him on it regularly. We also keep Trazodone on-hand. We decided it was better to have some PRN meds. to control things rather than go back to either a psych. ward or residential placement, or getting hurt ourselves, again. We've been able to wean off all the anti-psychotics and are working w/an integrative PANS practitioner with success. Good luck to you.

She has been treating ds15 since March 2014 with slow-going but good results, and with even better results over the past 4 weeks. In fact, things were previously so bad here that we'd already had one psych.hospitalization and 2 yrs. residential placement in Utah, so this in comparison gives us hope. I'm working with her as well, since we discovered Babesia (and I had a very bad EBV infection 10 yrs. ago, probably now w/recurrent flaring). As an integrative NP, she is looking at overall immunity, allergies, autoimmune issues, de-toxing, possible Lyme in ds15, inflammation control. Lots of bloodwork (vials and vials!), and so many abx plus supplements that the weekly fill takes an hour, and we have to ingest most in two batches; fortunately ds15 is a pro at med-taking. I find the office the be disorganized which drives me nuts, but that is a separate issue. Happy to private message if you have more specific questions. Tracy

We had sudden onset of similar vocal tic as well (a high pitched "yelping") that went on for 10 hours non-stop, maybe at age 9 (I've forgotten!). I do think ds15 had been sick preceding that, but never tested for strep. Unfortunately, it has taken us til this year to get PANS treatment (long story for another day). ds15's Moleculera "Cunningham" panel had elevated cam Kinase auto-antibodies, which are indicated in tics, and not always elevated in Tourettes. Although ds15 has a Tourettes dx due to other transient minor tics, like eye blinking and lip-smacking, the sudden vocal onset, and later severe neck/head jerking, were alarming. Only other known "tics" case in family is a first cousin of mine (and only eye blinking). Anyway, we started abx treatment in March 2014 and most of ds15's tics are almost absent except during stress (or fatigue, as you mention). So, for us, PANS treatment is helping a great deal, but b/c we started so late we have a long road ahead. It sounds like you already have some success b/c you started abx treatment right away.

Stimulants (the more typical ADD/ADHD meds) usually increase ds15's tics, especially Concerta (extended release stimulant). But now that his PANS is being treated and his tics have decreased enough, it's been less of an issue for us. I do think they (stimulants) make him irritable as he comes 'down' (maybe??) which in him can also look like a PANS flare. He is now on regular release Focalin b/c that seems to have the least of above-mentioned side-effects. Hasn't affected his OCD, which is on the more mild end. Just one more data point for you.

We also have an IEP w/primary diag OHI (but orignally due to a host of other known issues prior to the PANS diag.). Then we have a general letter from our PANS practitioner stating ds15 is being treated for PANS (AE), but it doesn't go into symptoms. I also attach to the letter a PDF from Stanford's site http://www.stanfordchildrens.org/en/service/pans-pandas/what-are-pans-pandas? . I like @philamom's expansion on this so will add that to the letter next round. We are met with varying degrees of belief/attention that gets paid to the diagnosis, so unfortunately all the documentation in the world will just be overlooked by some, eg. our special NPS school is good at taking PANS into account but our actual school district is not, they think it's all a behavioral issue and therefore he should be at a different school. Don't get me started!

ds15 has taken 2 pills at night (total 400mg.) since March 2014. He hasn't had any issues that I can correlate to it and it's helped a lot w/his constipation and therefore detoxing issues. Plenty of other triggers exist for him though...

Yes, 4 months ago. First we are trying to address ds15's high Glutamate and low Serotonin with supplement called Travagen (or Nuvoxil), b/c it uses L-tryptophan rather than 5-HTP which was too activating for ds15. We just retested to see if above helped or not, and will have results in 2 weeks. Next we need to address his low PEA (for attention and learning; he has very bad ADHD as well as borderline ID anyway).

We were also using Bluebird CBD Oil 250mg, 10 drops 1-2x day for ds15 for about 2 weeks without much change. We were trying to address tics and anxiety. However, I feel our other PANS supplements, abx and general inflammation reduction protocol have helped most w/tics (almost absent now after 7 mos. treatment) and OCD (which was minimal and not debilitating). Anxiety still very high but he is also borderline ID so difficult to get him to tell us if the supplement helped or not.

oooh, better options! (it's been awhile since i've looked).

ds15 started on Trileptal 2 mos. ago b/c nothing else has worked. He had a few rapid-cycling bi-polar episodes of euphoria alternating w/aggression but psych. is hesitant to give a bi-polar diag. b/c of PANS, and we have underlying dev.disability dx as well. Anyway, having best success w/Trileptal so far. And not perfect, still experiencing aggressive rage episodes, a few per month, so also back to Benadryl or Risperidone-M PRN; I keep forgetting to try Ibuprofen.

I use one from forgettingthepill (dot) com but don't see it anymore. It was a weekly with 4/per day, and removeable by day, that locked! My favorite by far. But each compartment is too small for all our PANS supplements, so I use the locking one for psych. meds., and another (non-removeable nor locking) one for the rest. Then I transfer those to individual HumanGear GoTubb round containers (they stay shut) that I've labeled by time-of-day, if we're on-the-go. Which is a pain though makes for easy dosing for ds15 b/c they're like little medication dispensing cups! Phew!

I'm not t_anna, but gave it a few more days per t_anna, for ds15, and the disinhibition/mania went away. He is super sensitive to all meds and supplements so we are only using 10 drops of Bluebird's CBD oil, in the evening. He drinks it (quickly) in about a tbsp. of water, with his Pinella and Burbur drops. He weighs 130#. Bluebird sent me a new bottle stating the previous batch was tested and found to contain less CBD oil than their standards require.

Last week we started Bluebird Bot.'s CBD oil for ds15 (PANS, TS, ADHD, OCD, Intellectual Disability). Starting very low, similar to @mayzoo, as he is uber sensitive and often has paradoxical reactions. Do you think CBD can be disinhibiting or trigger manic episodes even though it's supposed to be calming and doesn't contain THC? Thks.

I am thinking of you - good luck w/the appt. Sorry I don't know much about the clinic, other than what I heard at the last PANDAS conference here (long wait to be seen, as you've mentioned, and mostly focused on research). ds14 suffered hourly/clock-work rages/tics also, for a couple years (all on video tape b/c no one believed me), causing us to place him first, in-patient psych. hospital, then in an out-of-state therapeutic school. FINALLY started PANS treatment in March 2014 and his tics have almost disappeared since treatment started, but we have a lonngggg road of healing ahead of us. Next up is probably Lyme too since I have it. And maybe gallbladder disease for ds14. HBOT - good idea, that's on our list too. Keep us posted re. Stanford.

Thanks, @rachel. This was a helpful description to me for elevated (only) CaM KII, which is case for ds14. PANS NP keeps telling me that antibody detection does vary w/the timing of the test/s. She wants to retest ds14 for Lyme and co-infections now that he's been on abx treatment for 3 months - I think b/c that could've stimulated his immune response?