tj21

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.

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. 

My DS 13 received 16 weekly LD (1/4 of HD) starting last November.  It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment.  In May of 2018 he had a HD.  Huge improvement, which lasted about 6 weeks, then he began to decline.  Had another HD two weeks ago. It was like magic. Immediate improvement.  He will now receive monthly HD until the end of this year.  Apparently, this is AE protocol.  Could take 18 months.  He is about 80% improved.  His symptoms were severe.  

Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing. 

I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG.
 
Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.

I'm not sure how to ask "what would be approved?", and get any info beyond what is listed in their IG clinical guideline document. That doesn't even list anti-NDMAR encephalitis -- so it's so out of date.
 
But you're right; if it were a change in rationale, it wouldn't sound forthright. If I were to pursue the deficiency angle, I think I'd want to expand the argument and state what is the truth, i.e., that we're dealing with two problems.
 
However ....The low dose and high dose seem to have opposite effects -- the low dose is immune-stimulatory, and the high dose immune-regulatory. So I'd be wary of making things worse by giving DS the immune-stimulatory dose.
 
But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing?
 
I think I've read of someone on this site whose kid had had LD 2x, which didn't help, then the third time the MD prescribed HD and it did help a lot. So i hope the answer is the former.

Oh my, I'm so sorry!  Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire."  She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues.
If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital.  Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions.
You may have reached a crossroads where the abx are insufficient for meeting his illness adequately.  Can you get a PANDAS/PANS specialist on board?  I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep.  I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing.
Hang in there.  Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

Sounds (from this distance) like tics.  My son had plenty of weird (choreiform) movements, but no real tics (in my opinion).
Can you find a PANDAS/PANS expert in your area?  There is a list here:
http://www.pandasnetwork.org/research-resources/us-providers/

Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.

I am so sorry.  DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily.  At first, he got a bit worse, then remission came two months after the taper ended.  He remains on antibiotics and turmeric.    Would he be willing to try steroids?  Clearly needs to reduce brain inflammation.  Again, terribly sorry.

You have a heartwrenching story.  I do understand the feeling of wanting to give up.  This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care.  It seems there are few success stories.  I totally agree - you are not a failure as a parent.  You sound like you have poured all of yourself out into the bottom-less pit of PANDAS.   I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.

Thanks. We have an appointment with Dr K in Illinois in 2 weeks and will most likely do IVIG. I am hoping for a positive response. A 2017 paper by the PANS research consortium lists some detailed guidelines for the treatment of PANDAS with immunomodulatory therapies. Also, the State of Illinois has passed Charlie's Law making it the first state requiring insurers to cover the treatment for kids with PANDAS. I am wondering if it is covered for people from out of state having the treatment/procedure in IL or if you have to be an IL resident?

Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required.  That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.).
My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions.  But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation.
Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.

OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR.
Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can.  We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience.  But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above.  I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions.
Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc.  So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. 
I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him.  So the psych meds were an important part of that for us.  If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers.  And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers.  Clearly, they don't.  As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!"
All the best!

Skin picking, trichotillomania, is indeed a common type of compulsion/OCD.  Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.

-One concern I had with IVIG is the fact it has donor elements and I'm afraid it could transfer a virus or some illness not found to DD. Am I being paranoid about that?  Glad to hear it helped your DS!
-My DD skin picks as well but Drs said it's just a tic/habit, don't think her's is a compulsion.
Thank you very much for your response! 

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!!

Hi, and welcome!
My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.
We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.
A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.
2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.
3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.
And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.
Hang in there, and all the best!  All is NOT lost!

We don't know.  We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range.
 
My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.

My kids are only 10 and 9. They've been on abx combo since 2013. They may need then until they are 21.

In a way, it's relieving to know why they are always sick.  But, now, to make the decision as to which IVIG route to take is making us crazy.
 

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.
 

We did HD on both boys in 20014.  The worst PANDAS symptoms dissappeared over night and never came back.  After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure.
ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID.  LD monthly (.5g/kg for 6 months, stop 3 then 6 more months)  worked wonders.  No more flares, even when ill and on exposure.  LD was the best thing.

Hi
We noticed an almost immediate improvement for the vocal tics when we started L-carnitine.
However we were advised to not go above 500mg per day even though my son was adult weight & a young teen then

Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida)
In press, Journal of Child & Adolescent Psychopharmacology  https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf

I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job.
Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.