bigmighty

I have six or seven frozen pints left. PM me if you are interested. - Suzanne

Try anti-inflammatories and see if there is any change in the tic. Maybe take ibuprofen 3x a day for a week. If the tic reduces, it might be a clue that something like lyme or a PANDAS-type autoimmune issue could have caused brain inflammation? That might be enough additional info to make you decide you want to continue down this path and pay for an expensive consult with a specialist.

Did you already try a steroid taper? DS did two IVIGs, but got strep immediately after the 2nd. After another nine months of severe OCD, went to Dr. B. He did Aug 875 with a 21 day steroid taper. Seven weeks after the steroid taper, DS went into remission. If I had it all to do over again, I'd do a steroid taper and wait six to eight weeks before deciding whether to pursue IVIG.

I got it for myself in hopes of diminishing my food allergies. Turns out I am one of the few people who is severely allergic to CM. Did not want to waste it, so started making CM milkshakes for PANDAS DS 14. He drank them 2x a week for a couple of months. No behavioral differences except for extreme silliness a lot of the time. Overall IgG went up by 35 points, which is great because his is quite low. At that point, we increased CM to 3x a week, hoping for more immune system benefits. But then DS got systemic hives that would not go away. We thought it was the antibiotics, so switched those and switched probiotics. Finally realized the hives were caused by the CM. Stopped CM and hives went away. Tried adding it again, and they came back. If anyone is local in Northern VA and wants to give the CM a try, I have a reasonable amount of it in my freezer. PM me and you can come pick it up.

DS became completely "stuck" while using NAC. He would tell the same story about what happened in school that day eight times in the span of 20 minutes and have no idea he was being redundant. Or he would tell the same joke over and over and laugh each time as if he'd never heard it before, even though he was the one delivering the punchline. Took him off the NAC, problem went away. Put him back on three months later, problem started again instantly.

Have you guys already done a steroid taper? If that is an option for your DS, and you, your child, and the docs are willing to do a trial with prednisone, it might be worth considering. A year ago, we were right where you are. Did a 21 day taper (along with Aug 875) and saw gradual lessening of anxiety over the next couple of months. After that, he had a major change for the better. In DS's case, he still had too much brain inflammation for any ERP to be effective. Once we got that under control, he was better able to make a plan and stick to it, in spite of anxiety. Consider trying ibuprofen 3x a day for a couple of days and see if the anxiety is reduced on the ibuprofen days. If yes, you might want to look into the possibility of getting the inflammation under control before pushing the school issue. I know there are homeopathic anti-inflammatories such as turmeric that others on this board have successfully used, as well. Sending virtual hugs - Suzanne

My son weighs 49 kilos/108 pounds - age 14. He was placed on Augmentin 875 2x daily a year ago (weighed quite a bit less at that time). It wasn't until two months after the completion of a 21 day steroid taper that he began to see remission of symptoms. He has been in remission for nearly nine months. He was recently changed to a lower dose of antibiotics - Augmentin 500 2x daily. I don't think everyone achieves remission through antibiotics alone.

DS 14 is doing wonderfully. He had overnight onset just over two years ago. Went through 17 1/2 months of the worst possible symptoms. Had two IVIGs via NIH, but got strep immediately after the 2nd treatment, and symptoms became worst ever (3-4 hours of OCD rituals every afternoon, etc.). Eventually saw Dr. B and after switching to Aug 875 and a 21 day steroid taper, light switch simply turned back off. Overnight full recovery a couple of months after the steroids. Just switched to Aug 500, which will be continued through the remainder of the school year as prophylactic antibiotic. DS has better cognitive competencies than ever in his life. Just started high school & grades are great. He's growing and gaining weight for the first time in years. He has been 8 1/2 months symptom free. He does not remember ever having been sick. We have no idea what will happen if/when he gets strep again. We have a prescrip in hand for a steroid taper. If he gets strep, we will immediately ramp back up the antibiotics and start steroids immediately. I feel that we are in a good place with a good plan. I have nearly stopped waiting for the other shoe to drop.

DS has been on florastor for one year, while on Augmentin. No problems and he takes no other probiotics -just yogurt twice daily.

DS is cutting from Aug 875 to Aug 500. Anyone remember what happens when you begin to reduce the dose of prophylactic antibiotics? Thanks - Suzanne

http://www.sciandmed.com/mppa/journalviewer.aspx?issue=1095&article=1046

My gut seems to be in line with yours on this. I feel strongly that your child's problems are caused by the PANDAS, and are not ancillary. If I'm correct, that means that PT/OT & behavior mod may do nothing to help. Our DS had such low muscle tone that he looked like his muscles were loose rubber bands for a decade. Since going into remission eight months ago, he now has normal muscles for the first time in a decade. Apparently, the basil ganglia is responsible for sending a signal to the muscle telling it to contract. If there is brain inflammation, the muscle may not get the signal, therefore may not contract. A few years of PT/OT when DS was young resulted in no changes whatsoever in muscle. During the worst of his PANDAS exacerbation, DS jogged tand worked out with weights daily for a year and there was no change whatsoever. The only way he ever had normal muscle mass was via reduced brain inflammation. As for the weighing, I agree and would keep it to twice a week or something. The idea of emphasizing it daily causes a lot of added stress.

Amy, I searched for Magic Cup, and found a whole bunch of good products - fiber jam, protein juice, etc. Thanks so much. It's good to know that these are available.

I believe that the antibiotic will kill the beneficial bacteria in the probiotic. This is not true with saccharomyces boulardii (Florastor is the most popular brand name) probiotic, which can be taken at any time in relation to the antibiotics.

Not positive, but I seem to recall being told by NIH not to do vaccines within one year of IVIG because they probably wouldn't hold and you'd have to get them all again. Perhaps you could do some internet research and see if that's accurate.

Forgot to mention, this is the 1st time in 2 yrs that white blood count has been in the normal range.

DS has been drinking 8 ounces of camel's milk per week - a very small amount - mixed in milkshakes. His most recent labs show a 55 point increase in overall IgG - no idea if there is causation here or simply correlation. We are going to order again and bump up to 4 ounces per day and see what the next labs show.

Dr. B. did the taper. We are in Northern VA, he is in CT. If DS requires a future taper, his internist is on board to prescribe it, after seeing the results. I suspect his pediatrician would also be willing to prescribe, at this point, if we needed it. Where are you located?

DS 14 benefited immensely from a 19 day steroid taper followed by a month of ibuprofen, whereas a previous 5 days on steroids showed no relief whatsoever. If it is appropriate for your DD, it would certainly be worth a try.

As soon as you get to the lower dose of the steroids, start ibuprofen 3x a day for two weeks. You want to do everything you can to keep that inflammation down.

Very curious to hear more about the recommendation for low dose IVIG. My son has low IgG and a local immunologist (not much PANDAS experience) recommended low dose monthly IVIG. Dr. B. as well as parents on this forum cautioned against low dose and suggested that it would cause a PANDAS exacerbation. I know it is standard treatment for some CVIDs to do the low dose, but we have been told that this is not an option for PANDAS kids. Dr. L is certainly experienced with PANDAS, though.

My DS is 14 and weight 100. He is on Augmentin 875 2x daily as prophylactic. When he was exhibiting severe symptoms, the doctor did a 19 day steroid taper starting with 35 mg. Two months after the steroids, DS finally went into remission. During that entire time, he took motrin 3x daily and it was extremely obvious if he skipped a dose. The first few weeks on Augmentin, the symptoms got worse, but we were advised to continue anyway and see if things improved in week three. They did, then we added the steroids, and saw more improvement.

I can't find a source, but I seem to recall reading that about 40% of boys stop getting new PANS exacerbations after puberty.

Actually, DS did not grow for the entire 16 1/2 months he was ill and only gained 2 pounds during that entire period of time. It has only been during the past 90 days that he has started to go through puberty and growing normally again. We are certainly hoping that puberty (he is 14) keeps this at bay. But he had no signs of beginning puberty until a couple of months ago.

DS was in the most recent NIH clinical trial. Got the real HD IVIG twice. Very little change after the 1st. After then 2nd IVIG - six weeks later, DS got about 80% better, then got strep. After that six weeks of near-normal, the strep was such a setback. We were devastated. DS got much worse than he had been before the start of the NIH study and stayed that way for the next six months and many specialists. Finally went to Dr. B. in CT. He switched DS to Augmentin 875 twice daily. DS got worse the 1st six weeks on Augmentin, but we were advised that this was normal, and to keep pushing through it. Then we added a 19 day steroid taper (starting at 35 mg) after 8 weeks on Augmentin. DS was much improved while on the steroids, but lost a lot of those improvements again after the 19 days was up. Added in ibuprofen 3x per day to keep things manageable. Gradually, over the next two months, small things improved, but nothing was miraculous. Another two months on the Augmentin and, somewhat suddenly, the light switch simply shut off. DS was doing all of the ritualistic things he had been doing for the previous 16 1/2 months. Then he simply dropped 100% of his rituals all at once and could not imagine why he had ever done them. Mid-sentence, his skin coloring changed back to normal from pale and he paused and then said "For some reason, I think I used to be sick, but I'm better now."