tj21

-That is correct, like any blood product and as-yet undiscovered issue. So it's a matter of weighing different options and severity (bearableness) of whatever is going on. I always have the same hesitation before considering IVIG. -What @jan251 said re. picking - whether labeled tic/habit or compulsion they're kind of the same.

What ^^ said. DS17 showed symptoms at around age 8 (hindsight) and we didn't get PANS dx and treatment until age 14. -IVIG: we've had 2 high dose and are trying to get a 3rd approved. Son's immune system is dysregulated and he has hypogammaglobulimia (sp.) among other issues. Resetting his immune system w/IVIG has helped him. Search the boards for IVIG, there are long threads about experiences (I know, in your spare, not, time!). -Long term ABX: we just increased the dose and his current flare calmed down, has been on Augmentin for the entire -OCD: skin picking is very resistent to treatment but once his current flare calmed down a bit, the OCD subsided -Brain damage: don't know b/c he already had an underlying dx of dev.disability (cognitive), from birth. You are not alone!!

@jenniferG - Sorry to hear. Did they suggest steroids if flaring after LD ? You might search (in your spare time, right?!) the forum here, there was a lot about IVIG in the past. We're still waiting to hear back from our Immunologist. ~Tracy

So sorry about the rages! DS17 still flares from time to time, but nothing nearly as bad as before we started treatment. We used to use Benadryl 25-50mg (start low and watch for paradoxical reactions), Atarax (MD rx), 3-4 caps activated charcoal (detox) 2 hours away from any meds, and Ibuprofen. Hang in there.

Well, I was searching for info. on L-carnitine and found this old thread, that I'd commented on. @vvny are you still here? Any luck? We've been in a bad 3-month flare (screaming tics, spitting tics) that we can't get under control. DS is now 17 and we've been treating PANS for 5 yrs. Trying to get a 3rd IVIG, prednisone burst didn't work this time. Tracy

My 17 yr. old son started watching Little Bear again! However, he is dev. disabled (borderline intellectual disability), so I am never quite sure what's related to what. Though he has been flaring for 3 months, and some tics that we haven't seen for two years have come back. Tracy

Going to our immunologist in July (appt. pushed back 2 times, ugh!) to find this out. DS17 has had two HD only (1.75g and 2g); improvement for ~6 mos., after that doesn't last. IgG levels continue to drop, and flares continue. Hypogamm. dx but don't know why his numbers drop, yet. Glad to hear LD has helped for some; my fingers and toes are crossed for some relief here. About to do 2nd steroid burst.

DS17 has been on 875mg - 1000mg Augmentin since 2012. I'm sure most bacteria are resistant by now, which makes me think the abx is only affecting the cells across and in his BBB. The probiotics he takes seem to be working all these years (Florastor and switching between 2 types of Klaire and Theralac). Sigh.

Thanks. I'll double check again w/his practitioner too.

Hi - Any updated dosing info on L-carnitine? DS17 weighs 170#. I started out with 500mg in a.m., but added a 2nd in p.m. for a total of 1000mg./day. His tics have already decreased in intensity after 2 days, is this possible?! Thanks.

@Calimom6 - Wow, they have so many departments. The Immunology Dept. seems so-so on how much they know about PANS and autoimmune encephalitis, though the rheumatologist there (Dr. Heshin) was very good and thoughtful. Mainly we ruled out other autoimmune issues that were possiblities. The mutism and dystonia especially are tough. I had a dystonic reaction once. Did your son have high dose (2g/1kg weight) IViG, or regular (less than 2g)? I've heard regular doses can trigger a worse PANDAS/PANS reaction b/c everything gets activated. I think my son was sick around age 7-8, and didn't get dx'd til 12. It may be too late to completely heal/reverse... so we're chipping away at as many symptoms as we can.

I hope so for you (relief soon)! Our DS17 has same, we see Amy Smith, and also UCSF's Immunology/Rheumatology Dept., in conjunction w/CHO's Infectious Disease Dept. Will ask UCSF Immunology about the MS/Neuroinflammation clinic in June when we go, though sounds like it's more for adults?

Thank you! Yes, we are working on environmental triggers as well, and do know DS17 is sensitive, and has a dysregulated immune system that we've worked on for 5+ years. When he flares like this, it's usually after a cold virus or exposure to other bacteria/viruses, or toxins at camp (cabins.) For camp we ramp up preventative measures prior. Just haven't been able to help this particular tic as much as we'd/he'd like. Some is probably habit but much is involuntary. Will retest ammonia levels (were elevated), and there's some concern about sulpher activation (taurine, glutathione) so tinkering with those next. ~Tracy

Hi, I posted in the Tourette Forum but haven't heard anything. DS17 has PANS and an underlying TS dx (we think). Tics more or less controlled w/PANS treatment and 2 IViGs, but has remaining loud yelling tic (screaming one or two words, sometimes coprolalia). We are wearing earplugs. Do we just live with this, or is there something else to try?? He's already been on almost every psych. med, still on some, also on Functional Medicine regime for PANS with enough supplemnts to choke a horse. Has CBT therapist. -Has not tried L-carnitine or taurine, which I saw mentioned in past threads - PANS NP just said it'd be too much glutathione with these -CBD oil 25mg./2x day works so-so -Considering deep brain stimulation or tDCS is we can find a place Thanks! ~TJ ds17 (b. 1999): ID, DD, TS, ADHD, OCD, Anxiety; PANS diagnosis March 2014 and treatment started, about five years late. dd22 (b. 1995): neurotypical, IBS, Celiac mom (me): Post-babesia

Hi, I'm usually over at the PANS/PANDAS forum but DS17 does also have an underlying TS dx. Tics more or less controlled w/PANS treatment and 2 IViGs, but has remaining loud yelling tic (screaming one or two words, sometimes coprolalia). We are wearing earplugs. Do we just live with this, or is there something else to try?? He's already been on almost every psych. med, still on some, also on Functional Medicine regime for PANS with enough supplemnts to choke a horse. Has CBT therapist. -Has not tried L-carnitine or taurine, which I saw mentioned in past threads -CBD oil 25mg./2x day works so-so -Considering deep brain stimulation or tDCS is we can find a place Thanks! ~TJ (DS17: dev. disabled, PANS, ADHD, OCD, Anxiety; 2 IvIGs, one psych. hospitalization)

I think about this issue from time to time. My OCD has improved (lessened) after working w/a Functional Medicine MD to address Babesia and inflammatory autoimmune symptoms, including EBV flare-ups. Prior to that, I was already working with a CBT therapist, and taking NAC. I was hospitalized as a 6 yr. old with Haemophilus b (now vaccinated against) caused epiglotittis and my OCD started shortly after I came home. Granted, as an adult my therapists thought the OCD was brought on by the trauma of the early hospitalization and surgery, and I agree that that might've worsened it besides the infection. I have a lot of other autoimmune health issues as well and my IgG level is on the low end. I didn't have other PANS symptoms as a child though. Good luck.

Just went to the pharmacy and looked at the 1000 mg, 875 mg, and 250 mg bottles. The ratio of Amox to Clav acid is very different - much higher Cav acid if you combine 875 mg and 250 mg pills. Right, that's why we're using 250mg. plain amoxicillan with 875 augmentin, to get the amoxicillan part up to 1000+ mg. Using two 500mg Augmentin pills was too much clav.-acid.

Not that much. It's been about 30 days and so far so good.

Yes (West Coast, USA). We went back to Augmentin 875mg with additional 250mg. Amoxicillan 2x/day to get the amox. up to 1000mg. Supposedly the clav. acid ratio is same in all Augmentin per our NP, but I'm still confused why it's labeled differently in the doses (500mg, 875mg, 1000mg). Anyway, the additional amoxicillan is helping DS17 even though it's not extended release.

We finally did a steroid burst back in May 2016, for DS17 when he flared really badly and we couldn't get the inflammation under control with our usual methods (ibuprofen, charcoal, detox intensity, etc.). This was after two IVIg rounds. So far so good, even though I'm sure the flares will cycle on and off.

@Plum99, in our experience RC has been helpful for ABA, which I think you didn't need/want, crisis intervention services, and respite. That all said, our case mgrs. had never heard of PANS/PANDAS, and were not helpful in that regard for services. It does sound like you need a more definitive developmental diagnosis and a PANDAS knowledgeable MD. If RC ends up assessing and approving services, might as well take it!

Re. Regional Center: Are you clients already?

We are treating for PANS. We've been on Augmentin for at least 3 years. And a host of other meds (b/c orig. he was dx'd with Tourettes), and supplements. Detoxification, leaky gut healing, and anti-inflammatories. Azithromycin and Minocycline off and on (thinking Lyme though he never tested positve, even w/provocation. 2 IVIGs (high-dose). We saw pretty fast results (3-6 mos.?) but have had ups and downs ("flaring") so now I can usually tell something is off when the tics (vocal as well) come back. But the head-jerking has NOT returned (knock "wood"). Did your son have any other transient tics before this, or did the neck-jerking tic start suddenly? Even though we had other tics, this one was really sudden and dramatic.

I sent you a PM.

My son's started around age 9? It didn't go away until he was finally diagnosed with PANS, and we started treatment. Now his tics, including the head-jerking (he got a fatty/muscle pad on his upper back from it, that's since gone away), are almost gone. So sorry, hang in there and try to get some help with an Integrative or Functional Medicine MD.