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tj21

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tj21 last won the day on July 6

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About tj21

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    N. CA

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  1. tj21

    medication issues

    Got it. No, DS19 doesn't have Lyme or any co-inf. I had babesia, however, and was on doxycycline for 5 months.
  2. tj21

    medication issues

    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!
  3. tj21

    LD vs HD IVIG

    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.
  4. tj21

    LD vs HD IVIG

    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.
  5. 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.
  6. tj21

    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).
  7. tj21

    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.
  8. tj21

    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.
  9. 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
  10. 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
  11. 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.
  12. 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.
  13. 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.
  14. tj21

    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.
  15. tj21

    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
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