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How do I talk to doctors from NIH? My local pediatrician is afraid to treat because he feels it is outside his speciality, But if he had an AOK from a NIH doc, that would help a lot.

My son had IVIG in March of 2011, and after a long recovery from the IVIG, has had more than two great years. Unfortunately, this winter has taken its toll, and PANDAS symptoms are back (mostly anxiety, obsessive fears, and some defiance). I am really struggling because the physician who was treating him is no longer practicing medicine, and since I thought this was behind us, don't have a physician who understands PANDAS who is willing to write a script for antibiotics. His throat doesn't hurt and he likely won't test positive for strep, so I can't get a script from urgent care. Until I can find a physician, I need to keep him as stable as possible. We are doing Benadryl to bring down histamine, Motrin for inflammation, and are upping his prophylactic penicillin (we had backed off to one daily instead of twice). Are there any other supplements that I can use until I can get my hands on a script for Zithro? He currently takes GABA, magnesium, Inositol, and Olive Leaf Extract. Has anyone else been in remission that long after IVIG and then PANDAS came back? Was it hard to get them back to normal without another round of IVIG? My son is old enough that he knows what's happening to him and it is VERY hard for him emotionally to have the PANDAS symptoms back. Thanks, Sara

My son had a successful IVIG in May 2011 that got rid of 99 percent of his symptoms. He's on prophylatic Zithro and Olive Leaf Extract for good measure. Over the last week, he has had urinary frequency and urgency, and I fear that some germy kid at school has strep. I thought we were protected from this with the zithro! The exacerbation is MUCH less severe (thank you IVIG), but I can't let all the good progress slip out of my fingers. Also wondering why he is having an exacerbation when he's got all those good antibodies!? Any thoughts as to what to do? Thanks!

For PANDAS, the most helpful supplements we used were Inositol with IP6 and Olive Leaf Extract. They didn't fix the issue, but definitely did enough so that we felt it was worth it.

Rage and impulsivity were our most prevalent symptoms during exacerbations/infections. Very tough to deal with, because no amount of "reasoning" would work. We also had many episodes of what they call "exorcist syndrome."

I mentioned earlier that my son was neurotypical before the T and A, and had autism and PANDAS afterward. We aren't sure if it was something related to "bacteria being released" when the tonsils were removed, or the anesthesia. I learn towards both, and think the autism issues were related to the anesthesia, and the PANDAS to the tonsils. I have talked to many physicians since the surgery, and read a TON, and my suggestion is to ask the anesthesiologist for "balanced anesthesia" (his term) but basically, no nitrous oxide. It depletes the glutathione and stops up the detoxification process, which we think made the problem 100 times worse. I would suggest having your child at their healthiest before surgery, with lots and lots of probiotics and a good, clean diet. Just my $.02.

Is the Michigan PANDAS group also online? We are in Michigan and my son, after 3.5 years is finally in remission from PANDAS. Thanks.

Tonsil and adenoid removal is what STARTED our whole issue with PANDAS and autism. Our son was neurotypical before his surgery to remove tonsils/adenoids. It has taken 3.5 years to get him back.

We had two back-to-back days HD IVIG for our son just before Easter of this year. We had an extremely rough time after the IVIG, which lessened over the span of three months. Even while having the rough time post IVIG (sometimes during that time I wondered if IVIG had done anything, alternating with believing IVIG was the greatest substance ever), we did feel that we were trending positively toward health. Now, about five months post IVIG, our son is doing so wonderfully that people outside our family call him a "changed boy." And generally, because of the PANDAS fear, our son didn't "act out" outside our home. We still have occasional bumps, which I credit to the IVIG "finding" more of the bad antibodies and roouting them out. I have no scientific basis for it. We treat these mini-exacerbations (and that's too strong a term for it) with benadryl. He also is on zithro as a prophylatic. We are thrilled with IVIG and so thankful we did it. Ours lives are completely changed because of it.

Those first weeks after IVIG were SO rough for us. There were times when I wondered what we had done. To get through it (and it has been SO worth it!!) we used a lot of Benadryl (around the clock, every six hours). We used charcoal but that didn't seem to help as much as the Benadryl. We did Motrin in the beginning but didn't keep up with that. We kept life very simple and didn't expect much, which is so hard because everyone is hoping that IVIG will have a wonderful effect. As hard as it is, really three months out is the indicator of success for most. We actually are closing in on five months out, and still have some regressions every couple weeks, but when we give the benadryl, it gets him through and he comes out even better. We do keep up on the abx too, to prevent further infections.

Unfortunately, T&A is what set off PANDAS in our son. If we had known, I'd probably have worked with the ENT more closely so that he more carefully removed the tonsils. I wish we wouldn't have done the T&A but I think the problem also had a lot to do with the anesthesia as well. My son had an autism diagnosis for two years after the surgery and then we just had the PANDAS label. He had IVIG four months ago and I call him "in remission."

We had a very rocky time post IVIG, but are fortunately on the other side now. Several times after IVIG, our son would regress. Now, I surmise that it was the antibodies finding more "bad ones" hiding in his body, and the bad behavior was part of the die-off process. We gave around the clock benadryl post IVIG when he had those bad periods, as well as activated charcoal. We also made sure the kid was pooping regularly to get that bad stuff OUT! Have you continued antibiotics post IVIG? Perhaps your child got exposed to strep again? We also give our son olive leaf extract, which seems to help too. We did a lot of inositol with IP6 in the past too. If you have continued antibiotics, have you continued probiotics too? When my son's gut is off (mostly with clostridia) he could be extremely mean for no reason to his siblings. It does appear that your child's IVIG was not as successful as some. I'm so sorry about that. It's got to be a huge letdown. I hope you can find whatever is causing this horrible OCD. One other thought....was your child in the NIH study? Is it possible that your child didn't get the IVIG, but got the placebo? This may be a dumb question, but it does seem a bit odd that after IVIG, your child got better for three weeks. With numerous case studies I've read, the period right after IVIG for up to a couple months is pretty rocky. For your child to be good right after for three weeks seems unusual to me, but I am no expert. I will mention that my daughter needed celexa and psych treatment because of her brother's PANDAS. He caused such chaos in our home for three years, and I underestimated how difficult it was for her. If I had to do it over again, I'd give her more respite, and try to find time for just me and her to spend together away from her brother.

My son had IVIG four months ago and it was very successful. He still has some slightly "off" days, but for the most part, IVIG was a miracle for us. We are continuing once weekly zithro. All of the sudden, my son gets cramps after taking it, has a really very messy BM (he makes me come look), and then moves on. Anyone have a similar reaction? Is this strep die off? Also considering it could be yeast. Thanks!

I had originally posted about Dr. C. I would email Cathy because I don't think you have to have a consult appointment with him before you could get the PET-CT. Plus, he is VERY research oriented, and so more brains to scan means that he gets to continue his research and his funding. So it behooves him to make sure you get the PET. We did not participate in the research study but he did offer it to us. My son's issues started because of anesthesia so it was too big a risk for us to take. I do understand "the greater good" and that his research would potentially help others, but I just couldn't do it. So we did other things to know if IVIG would work. We did a rule out MRI (no sedation), an EEG (to rule out seizures), and a prednisone burst. All combined, along with his very dramatic clinical symptoms was enough for us to decide to do the IVIG and actually get it covered with a special appeal to our insurance carrier. We are three months out from IVIG, and although we had an extremely difficult time after the infusion, our son is doing amazing now and we are so glad we did IVIG. Not just to keep those nasty strep infections away!

We had IVIG three months ago, with such good results! Our son is still occasionally going through some bumpy periods but they are short lived. I think his body is searching out the last of those nasty antibodies. So now, until he's 21, we've got to keep him protected from strep. Insurance will only cover four 500 mg Zitho pills a month. My doctor says that with the half life of zithro, he's unprotected one day out of the week. Thoughts? Any of you now doing antibiotic therapy post IVIG doing a similar regimen? Does it keep them protected? Or should we go to daily penicillin? Thanks.

If you're in MI, no reason to wait for approval for a PET. Contact Children's Hospital. Dr. C at Children's does research on this topic and Children's will most likely do a serotonin PET-CT at no charge.

My son had IVIG at age 8, three years after getting PANDAS. I wish we would have done it sooner. We had an extremely rocky time post IVIG. He threw up every 15 minutes for 24 hours. We gave Benadryl and Motrin around the clock, when he could keep it down. Limited steroids, but we did some. He had a killer headache. The rocky period lasted a few weeks, then tapered a bit so we'd get some peace, and then we'd get another wave of bad behavior. Turns out, it was just the antibodies dying off. Evidently, the body doesn't kill them off all at once, and so, like others, we had a bad period post IVIG, then at about three weeks, then eight, then 12. We just gave Benadryl to get through it. I did question right after the IVIG what we had done, and it was horrible to see my son so sick. I've since read that a big reaction like that is great....beacuse it shows the IVIG is doing it's job and killing off those nasty antibodies. My son has begged to go to the ocean (his obsession) for four years. We could never even take him to a restaurant, much less get on a plane. He is now doing so well that we are taking him to the ocean next month. His anger and rage are gone, the obsessions are gone too. He never had tics. We had worried that he wouldn't live independently, or he'd hurt or maim someone with the rage episodes. We now have hope that he has an independent future.

If you child has PANDAS, then they have to be on antibiotics. If your physician won't give them to you, it is important to find another physician. With every exposure to strep, they get worse. We got to the point that our son was just in the same room as someone with a sinus infection, and his symptoms would get bad again. We tried the antibiotic route for probably a year or so. We ultimately went with IVIG and now, three months post treatment, my son is doing unbelievably well. IVIG was our miracle. The throat culture is useless. It's the antibodies that are the important indicator.

We had a similar issue. Perhaps it is your younger child getting sick first (but symptoms don't show up till later) and it affects your PANDAS child. When my son's PANDAS was very bad, he'd have flare-ups just being in the same classroom as a sick kid. And because the sore throat doesn't show up until a few days after the kid is infectious, it was nearly impossible to keep him from being exposed. Antibiotics helped at that point, but didn't keep the flare-ups under control. Only IVIG, a wonder drug in our family, solved the issue. We had some rough times after the IVIG but now, three months later, he's doing the best he's ever been.

We did feel OLE helped. It didn't solve our issues, but it did help with keeping his gut under control. Actually, the supplement we found worked best was inositol/IP6. Ultimately, we needed IVIG to solve our issues. We are three months out and the peace in our house is so wonderful!

Our son had IVIG five weeks ago. After a rough week days initially, we've had a really great month. He was exposed to strep about a week ago, and now is regressing. It's hard to know if the regression is part of the post IVIG roller coaster others have experienced, or a problem related to the strep exposure. We are doing ABX and have stepped it up a bit. Here are my questions: Could we have "ruined" the IVIG benefits by being exposed to strep? What do we do to get past these post IVIG regressions? It would be easier to cope if we understood why. It just doesn't make sense. Why a couple good weeks and then downhill again? Does the herxing coming in waves? Any guidance appreciated. We are really hoping that the IVIG we fought insurance for wasn't all for nothing. Thanks.

We weren't accepted for the trial. They wanted new diagnoses only. We ended up getting insurance to pay for IVIG thankfully.

We are two weeks post IVIG. My son has been a big rollercoaster. Sometimes, we get glimpses of what his "new normal" will be...and he's calm, happy, no rage, no urinary urgency, no "voices in his head." It's absolutely wonderful and I want to cry tears of happiness every time I see him like that. Sometimes, out of the blue, we'll get a horrible day where he's screaming his head off and hitting/punching for no reason...and wonder if the IVIG was a flop. I don't understand it. What is the biochemical reason as to why kids hit a rollercoaster after IVIG? Is it a series of detoxes? Is it the headaches coming back from the IVIG?

I wish there was one right path, one right answer with this disease, but there's not. What actually set off PANDAS for us was a tonsillectomy. If I could go back, I'd never have done the tonsillectomy, but I can't. We did about a year of abx and other supplements. We had some good results from bacteria-fighting supplements for a little while, and some positive results from Insitol (another supplement). We are currently about 10 days post IVIG. What's hard is that recovery seems to be a roller coaster. He'll have an answer day followed by a horrible, rage-filled day. We are doing lots of abx as well so yeast is a problem too. You make your best decision at the time, based on the info you have. I'm a big believer in faith too, so prayer has been an integral part of our decision-making. We felt very strongly about proceeding with IVIG, but we couldn't stand to see our son so sick anymore (and he was wreaking havoc on our home). Abx alone wasn't cutting it anymore, and each successive exposure to strep (and then, exposure to any illness) was triggering symptoms. Mostly, in our house, it was rage and emotional lability and terrible anxiety.

I am very interested in this topic too. We are about 10 days post IVIG, and we've been doing 250mg of amoxicilin daily (he weighs 80 pounds). We have a month's worth, but the physician recommends this regimen for four to six months, then a once weekly zithro (500 mg) until he's 21. This daily amox is causing a major yeast flare up. It is really masking the IVIG benefits and I'd really rather switch back to the weekly zithro. How important are these antibiotics? Thanks!