bigmighty

They have only done liver function testing 3x since he started ibf. No problems. The docs did not seem particularly concerned with the long-term use. So glad to be done with it.

Also forgot to mention - DS still has his tonsils.

They were six weeks apart - first week in May and mid-June. Both were the real deal and both done by NIH. They placed him on a very low dose of azithro (500 mg 1x weekly) as prophylactic antibiotic after the fist IVIG in May and told us that we could not take a higher dose or any additional antibiotics and remain in the study. Unfortunately, it wasn't sufficient to prevent strep in July. After DS got strep, they added Cefdinir and kept the Azithro. Later, they changed to Amoxicillin and later still, a low dose of Keflex. When we thought DS might have strep again in September, they doubled the Keflex for two weeks and we saw slight improvement. They reduced it and DS did very poorly again. After we officially completed the study in November, we arranged for the ped to increase the Keflex again and scheduled a consult with Bouboulis. He is the one who switched to Augmentin. DS is still on Augmentin 875.

if i could pick your brain a little... 1)are you saying that you gave hime ibf 3x a day from July 2011 till until April 1 2012? 2)once taper ended it got worse than prior to steriod, but ended up with a 20% gain? I'm also guessing (idk)you went off of ibuprofren during the taper? 3) so Mid March would be one month from the end of the taper....Did you restart ibuprofren after the taper..that would be an additional month of ibprofren before stopping ibprofren completely? Just trying to calculate, unless you meant something differnt...he was on ibuprofe for 6 months, a month off, then another month of iburpfren. Sorry if i reading that wrong. Just trying to clarify things. Remember my brain is overloaded, so be kind if i misread that. PS i wouldn't mess with another right now. see where you are in a couple months... you have/take a little time to think it over JMHO Yes. He had ibf 3x a day from July 2011 until April 2012 - with the exception of when he was taking the steroids. Stopped ibf while on steroids, until the last three days of 10 mg prednisone daily when it was very obvious that the ibf was needed. We tried every month at least twice to reduce ibf. Every time we cut down from 3x to 2x daily, he would lose all ability to make eye contact, only walk single file, and insist upon walking with his hands held up in front of himself like a doc just sterilized for surgery. Every time we added the 3rd ibf, he stopped those behaviors again. Last week in March, we tried reducing ibf and saw no change. Cut it down to 2x daily for a week, then 1x daily for about four days, then off. He has been off of ibf for about a week.

Forgot to say a couple of things - 1 - DS has had gradual return of appetite over the past month. Finally eating normally the past few days. 2 - DS is straight-up PANDAS - no co-infections, no lyme

DS was one of the 1st through the current NIH clinical trial. Had IVIG twice (May and June 2011). Began getting better right after 2nd round of IVIG. Three weeks later, he got strep and it all came undone. That was in July. He has had varying moderate to severe OCD and anxiety ever since July 2011 in spite of various antibiotics plus constant 3x daily ibuprofen (up until two weeks ago). DS (age 13 - 92 pounds) was switched to Augmentin 875 twice daily in early December. Initially, much worse symptoms, followed by a month of moderately worse symptoms plus refusal to eat. Doc advised not to stop Augmentin and to push through it and give nutrition shakes. By mid-January, about 10% improvement than prior to starting Augmentin. Started a steroid burst during 3rd week in Jan (35 mg prednisone for five days, then down to 30 mg for four days, etc). The burst was 19 days long, and ended on valentine's day. During the higher doses of steroids, we saw about 60% improvement. After off steroids, initially worse than baseline for two weeks, then about 20% additional improvement from prior to start of steroids. beginning in mid-March, slight gradual improvement each week. Starting April 1, moderate improvement. Yesterday, the switch was turned off and all rituals were eliminated at once (there must have been 500 rules/things one must not do/ways things had to be done/things to be avoided). At the moment, all gone. We had been seeing less anxiety each week. But the OCD disappeared in the blink of an eye. The only supplement DS takes is florastor. He is finally off the ibuprofen - as of three weeks ago.

Yesterday, DS 13 came home and announced that all of his PANDAS symptoms were gone - and they were. He had zero OCD and zero anxiety. Repeatedly did each and every thing that his various "rules" for the past 16 months had governed unacceptable (due to possible contamination of home environment from school germs). Did them all again this morning. Here's the funny thing - he is scheduled for IVIG in CT on Monday (it has taken us seven months to get this arranged). I called CT and they faxed us a lab slip. Took DS to get labs this morning before school. Hoping they can rush them through and see if low IgG has resolved. If it HAS, DS may not even need to go to CT. Wow! I don't even know how to feel. This has so dominated our lives for the past year or so that it is hard to imagine the possibility of life without it (and, of course, there is some fear that it won't last). I haven't told anyone else yet because it just doesn't seem real. It's like I'm still holding my breath. Boy, it would sure be cool if this lasts!!

From what I have heard or read, yes. Before & after. Yes - Before and after is correct. When we got to the point where they were requesting 17 vials for labs, we asked for more detail as to what they were doing with them all.

When you get your ducks in a row to proceed with this, just make sure that the actual treatment takes place more than six months from your start date with NIH and after you have completed your six-month NIH eval.

Was this when they were using once daily Amoxicillin as a prophylaxis? I could have told them that wasn't going to work. - We were told to give 500 mg azithro once a week, all at once, and instructed not to give more So, after they 2nd IVIG, they didn't put your son on a better prophylaxis? Geesh. - He was still on the very-low-dose azithro after 2nd IVIG and got strep. After that, when we contacted NIH to ask what we should do, they told us to get with a ped and figure out what antibiotics and what dose to try. Ped put DS on curative dose of Omnicef plus the Azithro. At one point during our e-mail exchanges, NIH recommended switching to low-dose Amox or a combo of Amox and Azithro. By then, we had already been to an ENT and an infectious disease specialist. They both recommended Keflex. So we stayed on Keflex until Dec, when Dr. Bouboulis switched us to Augmentin. I have heard from others who came later to the NIH trial that their children are on Augmentin prescribed by NIH. I am hoping that this does the trick for the present and future participants.

Our son was one of the 1st to participate in the present NIH clinical trial. Sadly, they had not yet determined what would be an appropriate prophylactic antibiotic when we participated. DS got IVIG twice, got 90% better, then got strep three weeks after the 2nd IVIG. That was in July and we are still in the process of finding a course of action to undo that major set-back, eight months later. We are hoping to get IVIG in May and are still trying to work out the logistics so that we can get DS (now 13) functioning again. Back in July, when we contacted NIH to tell them DS got strep in spite of his having religiously taken the antibiotics they prescribed, they said that we probably ought to go to a doctor and get some different antibiotics and then determine what prophylactic antibiotic we wanted to use moving forward. When we entered the study, I had naively assumed that NIH would be providing the advice and guidance on these types of issues. As we progressed, we found out that they were the experts until something did not go as intended and, from that point forward, we were pretty much on our own. Admittedly, I was bitter, at first. We went through so much to get DS well, and to watch it all come undone and have our world so quickly spiral back out of control again was devastating. But, ultimately, I do believe that the folks at NIH care very much about helping to further the recognized research in this field. I also know that this does not necessarily put them in a position to help individual children - even, in some cases, the individual children who participate in their study. From what I understand, we were not the only family to have a child get strep right after treatment and lose the positive results that had arisen from participating. Since it's a clinical trial, even though they knew full well that an additional IVIG treatment and different prophylactic antibiotics would rectify my son's situation, they were not in a position to offer those remedies. Fortunately, for those clinical trial participants who have come after DS, NIH has now changed their recommended prophylactic antibiotic to something much more likely to prevent future strep infections. So, some good has already come out of my son's participation. It just wasn't necessarily beneficial to him, specifically. As much as NIH does care, a clinical trial is a clinical trial. If necessary, one must be ready and willing to advocate for one's child even if this means seeking additional professional expertise beyond what NIH has to offer. All of this being said, I would highly recommend that anyone with a qualifying child seriously consider participating, both in terms of remedies and treatments for your child and in terms of advancing the state of research.

No advice. Just wanted to send a virtual hug and tell you how sorry I am that this is happening. Hang in there.

Do some research into IVIG and hydration. DS had the "can't move or will grab head and fall down doubled over in pain" headache after the first IVIG. We started doing some research and found that hydrating helps a lot. The suggestion we read (and it worked for DS) is to start drinking 8 ounces of liquid every 90 minutes while you are awake - starting 48 to 72 hours before the IVIG and continuing for 48 hours after. No symptoms whatsoever after 2nd IVIG, using this method. NIH found the same info that we did and gave IV fluids after the 2nd IVIG. In our case, fluids helped significantly. If your child can keep the liquid down, drinking fluids really helps.

This is interesting. Dr. Swedo says in this interview that she is unaware of PANDAS ever happening on clusters. On the DC area NBC news last night, Dr. Latimer was quoted as having said there was a big cluster outbreak of PANDAS in Richmond right now.....

Sorry, I have no studies. But just as an FYI - My son weighed in the 78-80 pound range in May and June of 2011 when he had his IVIGs at NIH. First visit - IVIG dose was 35.3 grams on each of two consecutive days. Second visit – dose was 35.7 grams on each of two consecutive days. I am assuming that NIH has a clue about the necessary treatment level for PANDAS. I believe that Dr. Bouboulis said that this was fairly high.

I just got an e-mail from a friend saying she saw a commercial promoting this for the 5:00 pm news today. I have DVR set for 5 pm and 11 pm. thanks.

Just OCD.

Thanks. We are planning a two week taper on the advil - beginning w/ 3x daily for the first week. Next appt w/ERP expert is this coming Monday! DS is eager to start.

Update - we went ahead and tried the steroids. DS is about 1/2 way through the 20 days. In spite of having an awful time on the low dose short-term steroids he took in the summer, he has had no significant problems on the higher dose. He is starting to reduce OCD symptoms and his anxiety is much lower. Hoping that we continue to see these positives as he starts to taper back off!

I sent you a PM. Hope you get everyone doing better quickly.

Thanks for the responses. I just got an e-mail back from Dr. B's office saying that it's all or nothing. So if we don't want to do the whole thing, we should probably skip it entirely. Part of me wants to try, because there is a chance it could put the remaining symptoms into remission. But I am scared.

Hi. Not sure what to do here and could use some thoughts. DS did five days on 10 mg of prednisone daily back on August. No remission in symptoms, plus many negatives - anger, extreme anxiety, physical aggression (only time in his life), expressing wish to kill or harm family members, etc. Dr. B. was made aware of DS's previous experience on this medication. He told us on yesterday's call that he thinks the steroids NIH gave DS this summer didn't work because the dose was too low. He asked if we'd consider a short burst at a slightly higher dose. We told him that we could probably last for five days again, but that it would be very challenging. Just picked up the prescription, and it is for 21 days - beginning at 35 mg daily for a few days and then stepping down. I have a call in to him to discuss and see if a shorter course is possible. But wondering if you'd give a kid who'd had a bad reaction to steroids more of them at a higher dose and for a much longer time interval....Also wondering if the reason for the longer use is because a shorter cycle couldn't possibly be worthwhile. Very hesitant to embark on this, but would certainly like to get DS to a better place symptoms-wise. Any advice?

1/2. Yes - Augmentin 875 twice daily (has been on one antibiotic or more for the past 13 months) 3. 13 yrs old - 88 pounds 4. two - Dec 2010 & July 2011 5. In holding pattern at 60-70% functional, but only if ibuprofen taken 3x daily Had IVIG in May & June 2011 and was 90+% well, then got strep in July 2011 while on azithro.