bronxmom2

I know this is not good, but for the last few days my son's hands have been twitching. He can't stop clenching and unclenching his fingers. He says the fingertips hurt and doing this alleviates it. If I hold his hand I can feel it twitching. He has never been very ticcy... more the OCD/behavior issue side of PANDAS. At his very worst, he did this big arm swooping thing all the time which, like this, looked like muscular aches that needed alleviating. He is about 2.5 weeks post IVIg (his third) and until this twitching started, he was doing amazing-- I mean this last IVIG had really really seemed to help him. He is also getting more emotional now, etc. So frustrating. When will it all end?

Worriedmommy, the steroids did not help my son that much either-- only very very subtly-- there was an improvement on the last day he was at the highest dose-- basically a one-day improvement-- that disappeared as soon as we started the taper down. I know that the few times I've had to take prednisone (for poison ivy), it makes me very jittery and emotionally volatile. So I think you should try, as hard as it might be, to separate what might be prednisone side effects from the PANDAS symptoms. I think if there's increased moodiness, it could be the prednisone. Good luck. Don't lose hope.

Hi-- I know this has been discussed many times, but I don't feel like there's a clear consensus on this. I'm curious how many people here currently think vaccines might play a role in triggering the PANDAS response. As soon as I figured out what was happening with my ds7, I stopped vaccinating my baby (who was then about 6 months). He has his 2-year checkup next week and I know they are going to pressure me about the vaccines. I know my husband wants me to vaccinate as well but if I feel strongly enough, he will probably support me. It just makes sense to me on a gut level that pumping a tiny kid full of vaccines all at once could play a role in a subsequent rogue immune system response. So when they come at him with that needle I say no. NYC schools are very stringent about vaccinations (as they should be I guess), but right now I am homeschooling the PANDAS kid anyway. Anyway I'm just curious about people's views of the role of the vaccines in all this. (BTW I'm still breastfeeding the 2yo and plan to continue indefinitely.)

Hi Doug, We subscribe to a few courses through the k12.com website. I don't know if it's the best, but it's fine and it was the easiest thing to do. I personally fall on the "unschool" side of the spectrum (just because my son has such an unruly but powerful mind-- as do all our PANDAS children I believe)-- he spends about 2 hours every day reading and another two hours lost in a fantasy world of play-- but I did need some guidelines to follow, especially in math and science. I think it might actually be free in a few states. Check their website. If you live near a city there is probably a local homeschool group that you can join. This has been invaluable for me. I joined an elist and I get a constant flow of emails listing events we can go to. Of course we live in NYC so I am lucky. Next week our plans include: A full day of foam sword fighting in Central Park one day (a full day of social interaction, but outdoor, where I feel he is "safer"); a tour of Yankee stadium; a tour of the Lower East Side tenement museum; and a civil war reenactment at Grant's tomb. This is SOOO much better than school. Plus we can sleep in.

My son will say "no" to almost everything I propose-- so I try to pick activities I believe he will enjoy, be engaged in, and learn from-- and ignore his "no" and do it anyway. He almost always has a great time and sometimes, lately, even apologizes afterward for his initial resistance! So we've developed a weird combination of flexibility and force. Of course I could never force him to do something he really did not want to do (Like audition for a play or something) but I do feel like I have a modicum of control over our lives.

I agree that she can't go wrong, but will he be able to do much over the phone?

Hey nojo, I did something similar-- pulled my kid from school in October. I am so glad I did. It made a big, big difference. First, his immune system is not under constant attack. Looking back, he was sick from the time he started preschool at age 3. Also, his extreme excitability made school torture for both of us-- he was in a gifted school where good behavior was expected. Neither of us felt accepted. When I tried the regular school around the corner, it was worse because he was so bored. And so many of these kids have learning differences. School focuses on the two things that are often agonizing for PANDAS kids: math computations and handwriting. My son will read about history all day, but they're never allowed to do that in school. Perhaps I am wildly overprotective, but in my heart I know I am doing the right thing for him, even if it means taking the whole family off the grid. Good luck on continuing recovery. Is your child off antibiotics? Mine is still on them, and I am doing the bimonthly IVIGs with my son. He has the same IGG deficiency so many of these PANDAS kids seem to have. (As do I.) At first the IVIG seemed to make him worse. Now (3rd treatment) he is definitely better.

I just want to say good luck-- I really hope the antibiotics make a difference. If her issues, or at least some of her issues, are infection-based you will see a difference.

I also have adult PANDAS (I had a temporary remission during and following pregnancy with my first child until we both got strep and unleashed the monster again.) Dr. Bouboulis (an immunologist in CT) is helping both me and my child. He can do an immunological workup. I am not doing IVIG, just antibiotics (I am more concerned with protecting my kid from a "death spiral" we had developed) but I suspect he might do it if I pushed for it. Contact him. He is a good person. You can PM me for his contact info.

Peglem, the low dose (1.0) also made my son worse. Much worse. He made a rapid recovery when he switched to Dr. K's protocol (1.5 over two days) You really must push for the higher dose. Will you Dr. talk to Dr. K? Dr. K convinced Dr. B that PANDAS kids cannot be treated like regular immune-deficient kids and got him to change his procedure-- which I am so grateful for.

didn't mean it as a criticism... just so interesting to see the same "unrelated" things keep coming up-- molluscom, tooth problems, weird visual hallucinations. good luck.

Wow, I have been wondering about Lauren too. I am SO happy to hear that the IVIG provided direct, clear relief. This is good for all PANDAS patients! You have done a lot for PANDAS and I hope you feel good about that. Say what you want about the media, but here they saw a good story (girl suddenly sneezing) and did their job-- and now the IVIG protocol has stopped the tic! No one can deny that it's real! My son is also getting IVIG through Dr. B, and though I am personally an atheist I feel an urge to say, "bless him." The first IVIG, lower dose at 1.0 mg per kg, made him definitely worse. The second IVIG, 1.5 mg but all in one day... I am not sure. The third IVIG, 1.5 mg over two days... I think he is finally finally really getting better.

Yes, my son had it from age 1-3. This has been discussed several times... many people have seen it. Of course my pediatrician told me it was "nothing" and would go away on its own. It did go away on its own but it was NOT nothing.

Worried Dad, I found out that I was the carrier in our family about the same time you did. For the past 4 years-- since my PANDAS son first got sick-- I've had a chronic sinus infection. I've been on augmentin 875 twice a day for the past three weeks. I'm really hoping this will smooth my son's recovery. Have you noticed any more improvements in your son since you started taking abx?

I am so glad you made the effort to see him. He and his staff are really wonderful. If there is anything in the blood work to justify the IVIG, you will get it! And quickly, too. AND he seems really good at getting insurance to cover it. AND he was humble enough to confer with Dr. K on the best way to treat PANDAS. He is a good person! Best of luck.

Mine had a flare up too, especially after the first round when he only got 1.0 gr per kilo. That DEFINITELY "stirred up the pot." I noticed less the second round and am hoping for even less the third time, which is next week. I'm so glad you're seeing Dr. B! Good luck. As for keeping them calm...I'd say just plenty of red wine for yourself.

My son is definitely hypoglycemic... he needs a dose of protein every few hours... I find hard boiled eggs very helpful, but they would be stinky to care around all day for afterschool.

when did he have the ivig and what dose?

Hi Claire, as you may remember, my son also did PEX and then IVIG, and the first IVIG made him worse. I think after you've seen the PEX and its immediate direct dramatic results, the IVIG is harder to watch... but I am quite sure you are doing the right thing!

dcmom, we have United Health Care Oxford and they have covered everything.

My son had them, starting at age one, and they lasted for well over a year. I was told it was nothing and they'd go away on their own. But in hindsight it was the first sign of something wrong. In fact I think I posted with this same question a year ago. I have no doubt it's related to the PANDAS. In fact I keep a close eye on my toddler. If I see molluscum, I will brace myself.

Unfortunately, this is why my son is no longer in school. Good luck pixiesmommy and daddy!

Hi Kim, we are still using it, but my son's away visiting his dad right now so I'm not sure if it's doing anything. I can say for certain that it didn't hurt, so it's still part of our regiment. I'll let you know when we get him back next week. Another thing that was interesting from our discussion last fall was the idea of raw (unpasteurized) milk giving immune benefits similar to breast milk. I am trying to find a good co-op where I can get raw milk in NYC to give my PANDAS and my 22 mo who I am still nursing.

This was definitely true of my son. Last fall when the #### was hitting the fan for us, with repeated strep infections and increasingly bizarre behavior between them, he ALWAYS became calm and serene when he was actually sick. There was a sudden spike in the weird behavior, then a moment of beautiful calm, then sick and calm. This even happened in the middle of the psych eval we had done at the time. The tester rushed out and told me, "wow, I don't think he has ADHD after all, he's amazing right now, he's calm and focused and perfect!" On that portion of the tests, he got literally a perfect score. Half an hour later he was curled up on the floor with a high fever. It was like the autoimmune reaction surrendered to the actual microbe and we had this brief window of happiness. In hindsight, even as a toddler, when he got sick I would notice this. He would suddenly become incredibly, eerily thoughtful and sensitive, almost clairvoyant, and start stroking my cheek and tell me, "don't worry mommy, I'm just a little feverish right now, soon I will be well again, I don't want you to worry about me..."

Hi Coco-- Thanks for posting this! Do you know if he is changing his protocol immediately? We are scheduled to do IVIG Wednesday-- with you I think!-- I am wondering if we are all going to get the higher dose?