tj21

We're still consulting with Amy Smith RN/NP but she's based in Orange, CA now, and we haven't been able to see her in person for awhile. When I did a search for new local practitioners, it seems there are even fewer than when we started all this 7 years ago. Children's Hospital in Oakland, ID department, was willing to do 2 high-dose IVIg sessions (due to hypo-gammaglobulenemia, sp., not AE but they are likely familiar w/AE), 2 years ago. Our CHO psychiatrist just retired, but was versed in PANS but wouldn't RX IVIg, which is how we ended up in the ID dept. there. Will be curious if you find someone and who it is. Good luck!

Starting new topic from below linked thread, since IVIg is the variable in our case. -DS19 has had six HD IVIg sessions (2 in 2018, 4 in 2019) and since January 2019 his vision cannot be corrected with glasses to 20/20. Has gone from 20/40 to 20/200 WITH GLASSES since January. I suspect it fluctuates because he's not complaining all the time, nor stumbling around, which one would at true 20/200 vision. -Has had 5 optometry and 1 ophthalmology appt. with 2 dilation medical exams. Eye structure itself is fine. -Waiting for a Neuro-Ophthalmology evaluation but since IVIg is the only thing that's changed, wondering if it's related. -Have call into PANS NP to discuss.

So sorry to hear all this! Have you tried https://www.amyjoysmithnp.com/ ? She just moved to a practice in Orange, CA and has worked with DS19 for about 5 yrs. to 'bring him back' to a better baseline.

In the thread @cmac posted is this link, though maybe you already checked it? It's how we found our practitioner. Agree w/others, if you can't find someone in TX, try to get a phone consult out-of-state to start with and get more blood work. http://pandasnetwork.org/us-providers/

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.

LD = low dose HD = high dose

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.

@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).

@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.

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.

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

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!

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.

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.

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.

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).

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.

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.

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

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

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.

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.

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.

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.

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