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tj21 last won the day on August 8 2016

tj21 had the most liked content!

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About tj21

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  1. In all my years of dealing w/insurance issues, I've not heard of this strategy, so will be interested to see what happens for you. If your insurance plan requires pre-authorization, then it's worth going that route since they could deny afterwards if you didn't do that. We just got denied for DS18's 3rd IVIG on BSCA. We got pre-approval for the two others under our other insurance AND BSCA. So apparently now BSCA is cutting back, or our current medical team didn't submit enough info. We're appealing the decision. Good luck, it's all so hard.
  2. 7 years of PANDAS

    I too am so sorry to hear what you're going through and feeling. Before we had the PANS dx, our son had one psych. hospitalization, then we ended up sending him at age 12 to a thx. boarding school out of state. (We reached an agreement for part of it w/the school district, and part of it through insurance, the rest was out-of-pocket. I realize how fortunate we were to have the means at the time, and good insurance though not anymore.) It about killed me to do it, but I too was so burnt out even with support that we couldn't sustain the chaos anymore (horrible tics, manic and psychotic-like episodes, broken glass, holes in the walls.) That said, he's been home for four years now undergoing PANS treatment (abx, IVIGs, etc. etc.) and doing better but no where near recovered, and may never be. I called the suicide prevention line 2 months ago, just feeling so trapped again. You are okay to feel like, and consider, asking someone else to 'take over.' Is it possible to find a crisis intervention team (most police departments have them), short term crisis treatment home near by, or an in-patient psych. facility? I sometimes call our crisis line just to talk, myself. With the hospital we could visit every day to keep an eye on things and staff, and had even a short time to regroup at home. Hugs and comfort to you.
  3. My son has PANDAS

    First steroid burst in 2016 for DS17 worked wonders, so there was inflammation that responded. All tics and rages diminished by the end of the taper. The 2nd day of the burst was bad (like 'roid rage' but not sure that really happens w/prednisone). Second burst this year did not help; DS17 has been in a flare for 3-4 months, so we're again looking at other GI and immune issues. IVIG: We need a 3rd round based on above, but are in N. CA. ~Tracy
  4. IVIG for untreated PANDAS

    -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.
  5. IVIG for untreated PANDAS

    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!!
  6. LD vs HD IVIG

    @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
  7. PANDAs - Rages

    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.
  8. 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
  9. 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
  10. LD vs HD IVIG

    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.
  11. 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.
  12. L-Carnitine Dose for Teen?

    Thanks. I'll double check again w/his practitioner too.
  13. L-Carnitine Dose for Teen?

    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.
  14. @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.
  15. 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?