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tj21 last won the day on July 6 2018

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About tj21

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  1. What's the theory w/the 'window of opportunity' ? I don't have an answer about what we'd do, but was just recently was asking our practitioner if 'maybe we're at the best we can be' (no full remission) and how much more to push and keep trying. DS19 can't manage things by himself, complicating things. But we have 2 more HD IVIgs scheduled until we start the insurance auth. and appeals all over again.
  2. DS19 has had 5 HD IVIg courses since 2015. In about 3 of the 5 he responded really well in terms of symptom abatement (OCD, screaming tics, anxiety, brain fog, etc.). We tried 2 monthly LD courses and all it did was stimulate his dysfunctional immune system and he "flared." He also "flared" after one of the HD courses b/c he was sick going into it. He has PANS dx but also other dev. disability. Good news is after taking him off Augmentin after 4 yrs. has not caused a relapse at all. Also - a steroid burst helped during one really bad flare, but made things worse the last time we tried.
  3. @beenthere - hi again. My understanding is that sometimes IVIg can trigger an immune response or flare, depending on how dysfunctional the immune system already is. PANDAS specifically even though it was approved under hypogammaglobulanemia. No co-infections and trying to avoid plasmapharesis and rituxamab. Still on Augmentin 500mg./daily prophylactic (was on 1000mg/daily for 4 years).
  4. @beenthere - Amy Smith NP/RN ? That's a great idea, I haven't had the thought or energy to petition BSCA (our current ins.) to cover her, but will put it on my to-do list. We have always had hypogammaglobulanemia as the DX, and BSCA approved HD IVIg. We have lab tests showing, besides low total IgG, poor immunization response (done through UCSF Immunology Dept.), which I believe was required.
  5. Hi - Sorry, though sounds like there's some progress. DS19 is scheduled for HD IVIg every 3 months. We had to postpone the latest b/c he was sick. When he went in sick to his last one, he was flaring badly and continued to for about a month post-IVIg. Then we had a significant turn-around at the one month mark - reduced vocal tics/screaming, much less anxiety, lower OCD, and overall happier (partly b/c he felt so much better!). He's due for the next HD IVIg in 2 weeks. Fingers crossed.
  6. Got it. No, DS19 doesn't have Lyme or any co-inf. I had babesia, however, and was on doxycycline for 5 months.
  7. Is the Augmentin dose high enough? DS18 took anywhere from 500mg-1000mg 2x/day starting at age 14. When he was on Azithromycin or other abx, he took them with the a.m. dose of Augmentin. I don't know Mepron either. Azithromycin "zithro" is pretty strong, so make sure she gets a good probiotic if you're not already doing that (well, w/any abx, actually). Good luck!
  8. Thanks, @maryangela . Just spoke w/DS18's PANS provider. Confirmed that b/c he was sick going into this latest HD IVIg, it will take longer for everything to calm down. We'll be doing HD every 3 months through November 2019. Good to hear about your DS13. We were also 80-90% improved January-March. Trying to get this current infection under control now.
  9. We got HD IVIg approved for DS18 after 2 more appeals b/c LD was triggering flares. Now having extreme flare, after 4th HD IVIg 2 weeks ago. Could it be cooincidental with exposure to virus/bacteria, having 2nd laryngitis-like symptoms that preceded loud screaming tics and head-jerking? HD IVIg in Jan. 2018 was a miracle, most symptoms abated. Flared after LD IVIg in March 2018.
  10. 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.
  11. 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).
  12. 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.
  13. 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.
  14. 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
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