bigmighty

My son did not have tics prior to steroids or after. I have heard of situations in which tics got worse or remained the same after steroid tapers, but OCD improved.

DS did two IVIGs via NIH clinical trial. After the 2nd IVIG, he was at 90%. Sadly, got strep three weeks later and ended up with a much worse exacerbation. About six months later, we finally managed to get on Dr. B's calendar. Started Augmentin 875 2x daily. A month later, did a three-week steroid taper. It was two months after DS came off steroids that he went into remission. He is down to Augmentin 500 daily and soon will drop to Augmentin 250. He is straight PANDAS. No co-infections. No other triggers. Just strep.

A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset.

DS's 1st IVIG resulted in about 10% of areas improving, but about 10% of new behaviors and worsening in different areas - so sort of a wash, overall. After the 2nd IVIG, I'd say he was at 85% improved within about three weeks. Yes, sometimes the 2nd has more benefit.

Thanks, all. We are going to offer DS the option of 1) Flying to and from the event with DH, but rooming with the kids, 2) Taking the bus with the kids, but rooming with DH, or 3) flying and rooming with DH. Also, we have asked DS to make a serious effort to regain the three pounds he just lost, before traveling to the next event - at which he most certainly will lose it again..... Cross your fingers for him!

DS has been in PANDAS remission for nearly one year. He is on 500 mg of Augmentin 2x daily, scheduled to reduce again in a month. His labs last week showed overall IgG of 600 - not terrible enough to treat, but certainly not optimal. Other labs all okay. His team just got invited to the largest national/international HS robotics competition. It means 20 hours each way on a bus, plus three 18+ hour days at the event. If DS goes, DH also will be attending - so at least DS will be reminded to take medications. During last week's three-day robotics tournament, DS lost four pounds (bringing him down to 111 pounds at 5' 10 1/2" tall). And that was WITH DH right there force feeding the kid every three hours. DS has extreme sensory issues and only eats about two dozen foods, so finding food while on the road is problematic. Also, DS sleeps nine hours every night like clock-work. Never less. He totally needs it. On the one hand, this is a huge opportunity not likely to be repeated. At the moment, he's in fair shape and I want him to enjoy his life while this lasts. But part of me is afraid of the possible set-back. WWYD if this was your 14 yr old? Thanks.

DS had two rounds of IVIG, then got strep again almost immediately after the 2nd IVIG. It ended up being a combination of augmentin and a steroid taper that got him back in good shape.

Interesting. DS's 1st and most significant flare was in December. I remember reading in Saving Sammy that warm weather is better for PANDAS and that it was recommended that she bring her son to FL for winter break.

My son's trigger is strep, but his titer scores are always normal, in fact, nearly nonexistent even when the labs are taken on a day when he just swabbed positive for strep. In his case, he had two IVIGs, later long-term high dose augmentin with steroid taper. Was your child's antinasal dna antibody score high?

DS will be coming off of antibiotics by next fall at the latest. Anyone using Olive Leaf Extract successfully in lieu of prophylactic antibiotics and, if yes, what brand/product and dosage do you recommend. Thanks - Suzanne

And get a throat culture anyway...

My DS does have a CVID, as well, yes.

We did the pneumonia vaccine about 18 mo ago, at the strong urging of NIH. DS had been through two rounds of IVIG, however, had gotten strep immediately after round two, and was not stable at the time he did the vaccine. We saw no positive or negative changes as a result of having done it. DS had nearly no immunity prior. Labs afterwards showed double or better the prior immunity levels. However, that being said, the prior numbers were incredibly small, so tripling a .01 in an area where a healthy person might have a 12 shows that having done the vaccine did not offer much additional immune coverage. DS has been in remission for 10 months. Dr. B. told us not to have any vaccine during the first two full years of remission for any reason and then to proceed with caution thereafter.

When DS was 13 he was on Aug 875 2x per day and he weighed 83 pounds. He was on that dose for a year.

Thanks, Nancy.

LLM - what brand of quercetin and from whom do you purchase? Thanks.

Thanks, all. This is very helpful.

Anyone have experience with either of these anti-inflammatories? Quercetin is found in grapefruit and Luteolin in olive oil or olive seed oil. Thanks.

DS was on Augmentin 875 2x daily for a year. He has been on Augmentin 500 2x daily for the past four months. Anybody know what's next in the reduction? What is the preferred lowest dose of daily prophylactic Augmentin? Thanks.

http://www.nytimes.com/2013/02/10/magazine/why-can-some-kids-handle-pressure-while-others-fall-apart.html?pagewanted=1&_r=3&hp&

We have been doing great. I'd say for the past four weeks or so she's been almost back to herself. Even came through a 24 hour stomach bug ok early last week. Yesterday afternoon and today, though, she definitely seems off. I guess we'll see... I think we'll do her labs again in another month or so as well. Yay! Crossing my fingers for ongoing progress.

My mom and DH's grandmother both had systemic scleroderma. I have always gotten mild tics when I take certain medications or when I get sick, so probably undiagnosed mild PANDAS for me.

DS 14 PANDAS diagnosed at age 12. CVID discovered through labs. Overall IgG 600 at present. Below desired minimum but considered too high to treat with IVIG at present. In a holding pattern just having labs every eight weeks. How are you guys doing?

Have you talked to the doctor about NAC? It seems about 50% of families see a positive benefit from supplementing N-acetylcysteine. It did not help DS, but I know many others who were helped by it. Perhaps you should ask the doc if it's something your DS can try?

At one point, DS 14 was placed on a low dose of prednisone for five days. It made things much worse. Nearly a year later, when Dr. B. suggested a higher dose steroid taper, we were scared to try because he had done poorly on steroids in the past with no noticeable benefits. When we finally agreed to higher dose/longer term steroids - 21 days - DS finally started to improve. It was, in fact, two full months after DS finished the HD longer-term steroids that we began to see positive changes from it. So - yes, you can see steroid results much later. But five days of low dose may or may not have benefit. It does for some people, but not for others. Are you doing ibuprofen and, if yes, does it make any difference? Sending virtual hugs.