Gpookie

My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.

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.

We did 2 rounds. Yes, less suck and when they do get sick, they just get normalkidsick....

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.

Thanks, but he doesn't seem to treat CVID....only allergies and related issues.

Dr. Bellanti retired. Does anyone know of a PANDAS/PANS friendly immunologist in MD/DC/VA? Doesn't really have to be a true "believer", just someone who will stick to their specialty and leave the rest alone.

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

Yes. Dr. Baig is excellent. He's our pediatrician. We live 5 minutes from his office. He's in the Edgewater office on Wednesday and Friday.

I disgree with many of her points.

I think people mean that there is no such thing as adult "ONSET" PANDAS. Clearly there are adults with PANS/PANDAS that were missed. My husband among them. It continually got slowly worse and by his mid-50s presented as early onset Alzheimers...totally reversed with PANDAS treatment once ours kids were also diagnosed. He's 63. His coping mechanisms were horrendous...one reason to treat early. I'll keep it at that...

Best thing we ever did. Nothing to be nervous about. Do a search as described above.

Anything that affects the immune system can trigger PANS symtpoms.

Are you in South Central PA? Try Dr. Richard Layton in Towson, MD. Good luck!

Year 3 of our sbx combo here and it still is working great.

Augmentin and biaxin are treatment dose, but used prophylactically (i.e. long-term). This is straight forward strep A though we've had odd ones elsewhere in the body D & F.... Both boys are immune deficient, but levels are now above normal at high end. I am most curious about this brand new, highly infected tonsil tissue!!! Ewww! Just happy that there are no flares....

Anyone had this? Son 8 had T&A 3 tears ago. No strep throat since then. On long-term Augmentin/Biaxin combo 2.5 years, and monthly LD IVIG 1.5 years. Got strep throat 2 weeks ago (strep A)...added Rifampin...still positive... Headed to ENT next week.

I have it here. Tried it on myself. Almost no taste, but slight taste of topsoil in water. Did nothing. It seemed like hype/great marketing. I used it as I tested as having no gut flora a year ago and started using it with my VSL3. Restore did nothing for 5 months...

Check everywhere foe strwp, not just theoat...also, much longer than 10 days is needed. Check back with your doc ASAP. Hope she gets better!

Interesting. I bought a bottle of tart cherry juice on impulse the other week for no reason. Hmmmmmm. I might take it out of the pantry niw!

What on Earth? I am lost

Quick question: Our boys are doing great (2 years now at 200%) with minimal supplements (magnesium and Enhansa), abx combo and monthly LD IVIG for immune deficiency... We don't want to shake things up, but are trying to cut back on the number of pills the boys take. They currently take 2, 150 mg pills in the morning of Enhansa and another 2 150mg pills in the evening. Enhansa has been critical to detox and keeping their liver numbers down. My question is this: have any of you switched from 300mg 2x a day to 600mg one time per day? Any feedback on experience on this topic would be great!

We moved on to IVIG fairly quickly for both boys. About 3 months on augmentin, then tonsillectomy then HD IVIG exactly one month later. Now on 3rd year of treatment dose of Augmentin and Biaxin, second winter on monthly LD IVIG. Boys at 200% and doing fantastic. (LD IVIG was to address inmune deficiency which had led to the recurring infections in the first place.) Sons are 9 and 10. My advice is follow your doctor's advice and make sure you know what you are treating (i.e. do you have the correct antibiotic based on cultured bacteria? Is it really/only/just PANDAS?), also, give the various treatments time to work... Bottom line...if it is PANDAS, it will at some point respond to PANDAS treatment. It does get better. Hang in there!

Are they not covering the entire prescription or just this month? We have to meet a medication deductible each year, so we pay out of pocket in January. Also, if we pick it up a day or two too early, we have to pay out of pocket...

I believe your last sentence is largely correct. However, I think it is a combo of true deficiency and malabsorption. 400mg a day took away my kids hyperactivity pretty much over night. We didn't have tics... Sometimes I think a bad gut is at the root ofcall this....

It's my understanding that Biocidin is an antimicrobial, not a probiotic...