bigmighty

Biopsy showed strep in tonsils, in spite of DS being on treatment strength antibiotics for the past nine months. He was in rough shape for the first 11 days, but we are now glad he was willing to go through it as it seems that it's a good thing he had them removed.

Tonsils will be cultured. DS will receive antibiotics and steroids in the IV during the procedure. He has liquid antibiotics, steroids, and prescription pain meds. Thanks

Anything I should know? BTDT advice appreciated. Thanks.

Living Clay is the brand that I have heard recommended the most frequently. I believe their site has some specifics - https://www.livingclayco.com/

Not getting anywhere finding insurance companies that cover IVIG for PANDAS. Are there any out there that are covering it for PANS rather than accompanying CVIDs?

Many thanks for the insights. I am taking my time to craft this carefully.

IVIG coverage denied by Anthem. Any advice for our DS's insurance appeal, recommendations as to what to include, etc? Many thanks - Suzanne

If you had a specific textbook that you felt was especially worthwhile, I'd greatly appreciate it if you could share the title. Thanks.

Oh - forgot to ask - where did you study homeopathy? Are there online resources or specific books you found to be particularly helpful?

So you are only treating your non-PANDAS carrier child, and the child with PANDAS is not on anything? What homeopathic treatment do you use for the child who is receiving supplements? Thanks so much for the details.

So, basically you're saying that IVIG and PEX (antibiotics/steroids) didn't help your child, but other interventions did? Would you be willing to share? What did you find to be effective? Has she attained a lasting remission? Thanks!

I went to the link assuming that this was a blog, as I was hoping to find out about your family's journey and which holistic options you found to be effective. But this link is asking for my contact details. Is there a blog somewhere on your site and, if yes, can you please steer me to it? Thanks.

The first year of high school was very challenging for him. It definitely has gotten easier as he progressed through. When he was a freshman, we didn't anticipate him ever being capable of taking any AP classes. The school has been exceptional. High school teachers are extremely accommodating of students who are able to self-advocate. Asking via email for reduced homework or keyboarding during tests and such always results in ongoing assistance. His teachers check in with him to see if he needs anything or if he can handle the assigned task. There definitely is hope.

Had phone consult w/Dr. K today. He recommended circulating immune complexes testing followed by having tonsils and adenoids removed. Then IVIG a month or more later 1.5g/kg. Sounds like a plan. Hoping insurance carrier agrees.

Mom23boys - What has been the experience of your boys with respect to the Bicilin shots? Are they "working" either as a prophylactic measure or treatment? Thanks

Not sure if DS actually qualifies as a strep carrier, since he has negative throat cultures between infections. It is definitely worth asking Dr K if clindamycin is worth trying. He does have a 504 and the plan is for accommodations to continue in college along with a single dorm room. Thanks.

He was off of antibiotics entirely for 20 months, during which he got strep every 8-10 weeks. He went on Augmentin 250 once daily this summer and managed to go 100 days strep-free, but then got strep again. At the start of the summer, he briefly tried Azithro 500 once every other day but found that he could not bring himself to eat on the days he took that medication, so it was switched. He is allergic to tumeric.

Thanks. I don't believe those recommendations will fly with DS though. He has looked into but ultimately ruled out all of the various local programs. He is interested in studying mechanical engineering. The closest program that's a match for him is about 2 1/2 hours away from our home. If he gets in, that will put him about 2 hrs away from his internist. Not super far in case of emergency. Also close enough for us to come and check on him fairly regularly. His biggest challenges are weight maintenance and recognizing early signs of a flare. Worst case scenario, we have to help with those things as best we can from 100 miles away. Of course, if there were a way to bring about a more lasting remission so he has a shot at more than maintenance & management, we'd love to pursue that during this school year - hence my original post. For senior year, DS is taking five AP classes and two college courses, which I'm guessing is comparable to the work load freshman year in college. Yes, he will have to learn to live on his own, and there will be challenges. But he can't imagine being happy with less than a full course load or settling for a school that he doesn't feel is a good educational match. He understands that he may need to make mid-course college plan corrections if his preferred situation doesn't work out. But he does want to try living away.

Thanks all. Started him on zinc supplements and are hopeful that there will be some improvement to report on the eating front a few months from now. Decided not to pursue plasmapheresis per se. Instead, went ahead and scheduled a consult call w/Dr. K. Will see what he thinks is best with respect to attempting to get DS ready for possible college. Thanks again for the advice!

Just curious - does anyone know: Were these case studies taken from Dr. K's practice, or were they compiled from multiple physicians?

It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and continues to become symptomatic sporadically even while continuing on daily antibiotics.

bsw would you mind sharing info on the specific zinc supplement you are using? Thanks.

Cool! I hope zinc turns out to be the answer. Will check into it.

Michelleb, I am so sorry your son continues to struggle so much. Praying that Rituximab takes him to a much better place. Thanks so much for your insights. I really appreciate it.

Thanks for the feedback. Still not sure what to do, but the more info we get the easier it will be to decide. Yes, he has been tested for bartonella annually for the past five years - most recently in September.