Gpookie

Hi, short answer, yes. I've posted elsewhere about that. In order to keep this thread on topic, please read my other posts. I'll also message you when I have time. Thx

Pandas was obvious: strep (exposure) = behaviors. No strep= no issues. Cunningham panel. IgG subclasses testing. Genetic. The biaxin was added after they contracted strep D while on treatment dose Augmentin. They don't tolerate lower dose of either yet. We don't plan on giving the Rifampin unless absolutely necessary.

Quick question. Our kids have been doing fantastic on the Augmentin/Clarithromycin combo (also post LD IVIG). We just met our pediatrician for a check-up before we leave for 5 weeks overseas. We've been on the PANS/PANDAS train for a couple of years+ hypogammaglobulinemia, and the boys have been at well over 100% for some time now. (PANS seems more of a symptom of the hypoG than a standalone issue). Just to make sure we travel with a full arsenal on our annual vacation, the doctor is giving us Rifampin to take with us as well in case the boys hit a bump. Has anyone used these 3 together? If so, why and for how long? We don't expect to need to use it, but I just wanted to check experiences.

Maryland. But what I think we are all are saying is figure out what the policy accepts and get a doctor in board to help. Don't try to go it alone. We focused on gettings our kids help rather than the energy to fight the system. Use the system as it is (with the loopholes that a good doc can help you use). Once you're child is healthy, you can work on changing policies, etc.

Our immunologist prescribed LD for 6 months. Immediate insurance approval. Prior to the 6th infusion, a different doctor (allergist), called the home infusion company and increased the dosage for the last dosage to 2g/kg from .5g/kg. Immediate approval. We never had to do the pneumovax or prevnar or NMDAR tests. Just on the basis of mild subclass deficiency, BCBS approved IVIG. Hypogammaglobulinemia We had the doctor and the home infusion company talk to the insurance company. We never did so ourselves. Both doctors are out of network, but the home infusion company is in network. However, 2 years ago, BCBS had denied coverage for the IVIG we did with Dr. L.

100% agree. Worked for us.

Hoping it goes well!!! From a fellow MD resident...

We balked at starting with low monthly dose. However, it helped my kids immensely. It does cause some symptoms to flare, but in the long run, with less infections, they do get better. They're doing great now.

We jumped to HD two years ago and I agree with KLW. If your child has hypogammaglobulemia, you have to treat that separately from PANDAS. Preferably first. If your child has hypogammaglobulemia, HD will not help keep the numbers up and your child will most likely relapse over time (probably due to lingering infections). Autoimmune disorders are often a symptom of Hypogammaglobulemia, so for us, it was key to their recovery to treat this first. With a stronger immune system, we've cleared them of lingering infections and HD is now to knock out residual PANDAS symptoms. But every child is different. Though both sons have had the same low dose for the past 5 months, one son is getting HD this month and the other is getting LD, but needs allergy shots to get rid of residual symptoms.

With our boys, we considered 2g/kg high dose and .5g/kg low dose. But I've seen people refer to things differently on these boards. I try not to compare treatments because every child with PANDAS walks a different path....

Sounds like he wants a strong "loading dose" and drop to a maintenence dose. It may be connected to how low your child's numbers are and how sick he/she has been. Sounds like a good plan to me. My kids were treated for hypogammaglobulemia as well. Numbers are normal now and the immuno is giving them a HD "send off" at the last infusion this month. They improved with only .5g/kg (after a 2g/kg loading dose a year earlier)

Our kids were not helped much by the HD two years ago. The are being helped by the 5 low dose infusions . It helped their IgG levels return to normal and they are much stronger. The last one (#6) is to knock out residual PANS and the doctor ordered this one to be HD at the last minute. BCBS approved 6 infusions starting low and still covered the high dose 100% when the doc raised it, but we let the home infusion company ask BCBS since they're in network. Hypogammaglobulemia gets approved.

I would say, if you want to go for approval, go for the subclass route if that's what your policy covers. If your goal is to educate them and change their policy, go the immune modulation route. Not sure if either would work on appeal or new claim since it would be the same initial procedure... I would get someone on the phone and ask them what WOULD be approved. This may be the best way to figure out what the would accept, especially if they were to accept a change in rationale on the appeal. Hope this helps?

When they approved ld ivig, they (pre)-approved 6 rounds due to hypogammaglobulemia (that was our diagnosis and most likely the cause of PANS in our case). Each time the product is ordered from the provider, the provider asks if there has been a change in dose. Yesterday, the doc said yes and the next (last) will be HD. Their ivig was to treat the immune deficiency not pans or autoimmune encephalitis. Their numbers were normal again after the 4th infusion. Two years ago we simply paid out of pocket for HD due to BCBS policy. Which is a policy with which I agree. Our goal (as is the goal of LD), was to boost the body's defenses so that we could treat the infection which led to PANS. Only after several ld, have we been able to finally eradicate strep. Only one son needs the higher Dose with the last round, but his autoimmune reaction was bigger. Please pm me because I don't really like having so much personal info on the internet...

I second what philamom says. My kids also failed all pneumo serotypes. IgG numbers were normal after 4 ld ivigs. Insurance just approved HD ivig today for the final one. Kids are doing great.

We are 2 years on Augmentin (500mg 2x day) for PANDAS/PANS and recurring strep A and B but just added clarithromycin (250mg 2x day) due to strep D infection. Boys are 70 and 79 pounds. Monthly ivig due to low IgG...

I'm in Annapolis. You can send me a private message.

Fully agree. My kids even flared when they lost their baby teeth...anything that triggers and immune response...not just bacterial infections...

BlueCrossBlueShield (CareFirst) doesn't cover HD IVIG for Pandas for us or autoimmune encephalitis. We paid out of pocket.... However, after we discovered that the kids have subclass deficiencies, they covered the monthly LD IVIG no problem at 100% for home infusions and a nurse once a month. It's even "in network"...

Strep D. Found during a full body search for strep (perianal swab). While both kids on Augmentin, during 4 months of ld ivig (current) and after hd ivig (last year). 6 months of one son totally falling a cliff and the other one had strep and was struggling. Resolved to 150%+ of baseline within 36 hours of adding biaxin...

No, just cleaning out their system of all kind of things. Step 1: use a binder ( charcoal or bentonite clay). Step 2: bowel movement 2x a day ( magnesium or miralax. We just give 200mg mag citrate pills 2x day to keep them regular). You can message me if you like. For us, detox is as critical as the antibiotics....

Even after 2 years on Augmenten daily (1000mg), our kids symptoms kept returning and getting stronger until we discovered an infection that the Augmentin wasn't impacting. They actually now have added a 2nd antibiotic to keep them on track. Every child is different and it also depends on how long they have been ill. Insufficient detox also causes downturns even when the antibiotic is working...But every child is different...

I messaged you :-). Our appointment was made a couple of weeks ago. My oldest tested positive for strep (perianal) two weeks ago. Penicillin resistant. Never has had a positive throat swab.

Not sure. My son (8) never had tics until we started monthly ivig. It resolved when we added a 2nd antibiotic, but showed up again two days ago, along with a "stinging weewee". We see Dr. L. on Friday. He also doesn't seem troubled by it...

For us, it's the other way around? Their OCD during a flare is an extreme obsession with Minecraft (on the Kindle, phone and Xbox), when we address the flare, the OCD, etc. Goes away....