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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. Yes, but not in-home. It was done at Children's Hosp. here, so the MDs took care of it all. I feel like the insurance co's in general, respect that more than private practitioners, unfortunately. We're currently fighting BSCA for in-home IVIg through our private practitioner, don't have UHC anymore. DX of hypogammaglobulanemia, which doesn't warrant HD IVIg, unfortunately.
  2. LD vs HD IVIG

    Got it. Our physician is out-of-network also, but we're doing IVIg w/a company in-network. If insurance denies, will decide if we want to risk another LD (have them approved every 4 weeks until November).
  3. LD vs HD IVIG

    Thanks, @JenniferG. Are you covered by insurance for the HD? March LD was .4g/kg. and I think just stimulated his immune-system rather than rebooted or modulated it. He's had HD 2x at 1.0g/kg, and the Jan. 2018 HD was .75g/kg daily for 2 days, and it worked the best. No flaring after any of the HD, but nausea and headache so we give Zofran ahead of time now.
  4. LD vs HD IVIG

    Hi - Any updates on LD? DS18 flared after 2nd low monthly "maintenance" dose (following HD in Jan. 2018, after which he was almost symptom free). Appealing insurance to combine LD's to make one HD.
  5. Cross-posting, though I see many of the same members here. Hi all, It's been awhile. We were approved and did a HD IVIg Jan. 2018. Approved for on-going monthly LD through Nov. 2018, however those are triggering (immune-stimulating) DS18 so trying to appeal insurance (BSCA) for 65gmx2 every 12 weeks. They already approved 65gmx1 every 4 weeks, so this would be less costly and less frequent, ultimately. But then we get to medical necessity. Any other advice re. dx, does have hypogammaglobulinemia dx. But as mentioned above, also has PANS, so needs IGg levels to stay high, but also needs immune-modulating of the high dose. Thanks, Tracy
  6. Hi all, It's been awhile. We were approved and did a HD IVIg Jan. 2018. Approved for on-going monthly LD through Nov. 2018, however those are triggering (immune-stimulating) DS18 so trying to appeal insurance (BSCA) for 65gmx2 every 12 weeks. They already approved 65gmx1 every 4 weeks, so this would be less costly and less frequent, ultimately. But then we get to medical necessity. Any other advice re. dx, does have hypogammaglobulinemia dx. But as mentioned above, also has PANS, so needs IGg levels to stay high, but also needs immune-modulating of the high dose. Thanks, Tracy
  7. It used to help, but we just couldn't sustain a good baseline. Last year DS18 (!) was flaring so badly, we did a 3rd high-dose IVIG, with monthly low-doses for maintenance, with good results.
  8. So sorry to hear you're going through this. After going through psych hosp., ER visits, and 6 years of flaring, etc. w/DS18 (when 12 thru present), I would concur re. hospital if you don't yet have a good PANS/PANDAS MD/NP, psychiatrist, or someone who can intervene to keep you all safe. At minimum something to buy you time to figure out next step. We now have a PRN med ("dart gun") for emergencies; allows us to keep him safe and with us.
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. 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!!
  14. 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
  15. 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.