peglem

Melanie, has Dr. J seen the studies that lower doses of IVIG are pro-inflammatory? Higher doses are anti-inflammatory. Lemmee see if I can find that for you.

Buster - I want to see if I have this right - If a person with PANDAS has an infection that causes a strep reaction, and then has a 3 month period of no infection / no inflammation / not crossing of the BBB... Then has a new infection / inflammation and opening of the BBB after the 3 month period with no active antibodies circulating in the blood... Could T cells and B cells enter the basal ganglia - and still produce strep antibodies from memory.... or do you have to have an active strep antibody that crosses over. (I serously hope that made sense) - Here is a website that describes what I am thinking a bit better http://www.cellsalive.com/antibody.htm So, are you asking if the immune system will produce autoantibodies in the absence of strep, to the basal ganglia, because it mistakes something there as strep antigen? That's a great question!

My husband won't let me have champagne for breakfast!

I don't NOT wanna be a doctor, I'm just not sure what I want to be yet! I think I want to be an editor for a publishing company. It sounds strange coming from someone who types "wanna", but I love language, haha. At the same time though I also find a lot of random things really interesting, like parasites & pharmacology. Who knows. I'm infinitely curious, there's no doubt about that, so I'll be able to pick something & be happy with it when the time comes. Oh, so this is about what YOU want! I see how it is!

This sounds a little scary. Did you get a copy of the scan? You might want to have another neurosurgeon (I'm told neurosurgeons are better at "structure" dx than neurologist, who are better in the "function" area) look at the mri. Let him/her know your concerns w/ family history and see how they think you should proceed.

Well, let's celebrate and then take a rest. I've been spending 4-5 hours/day getting people to vote. Then another project!?

I've been told zoloft is a tough one to wean. I like the cheese grater idea, but I think I'd actually maintain new dose for a week at a time- give the body/brain a good adjustment period. As for when? I'd want to wait until PANDAS recovery has been stable for awhile....maybe 3 or 4 months. The 1st three months of 2010, my daughter was doing very well and I decided to start a wean of her Lamictal. She was on 250mg/day. I began by cutting 25mg from her evening dose, and stayed at that dose until I saw a full week of stability- then I'd cut another 25. I did not take it back up if she floundered. By the time she started a new exacerbation, she was down to 150mg/day. I've kept her there, but as she continues to make progress, I will start reducing again, as long as she stays stable.

My daughter has been getting IVIGs monthly since March, covered by UHC...I don't know how its been coded by the immuno though- I suspect immune deficiency (which she has) but the place where we get the infusions done (local children's hospital outpatient unit) has her down for PANDAS. She's getting another on the 8th and 9th of July.

My mom wanted me to be a doctor....there have been many, many times that I've regretted not taking that advice!!!

I feel like its New Year's Eve, and I'm waiting for that big moment to arrive...where'd I put that champagne?

Me too!

Your mom is going with you. right? I think it will be a very good thing for Dr.K to have a conversation with her.

Oh, no! We're back to 6! Time for a steroid burst!

Not to side track, but has anyone seen that commercial on tv urging adults to be vaccinated for pertussis to protect babies?

Personally, I'd just do the tetanus, but we have been unable to find tetanus shots w/o the diptheria component. Its been a few years, though. Years ago when I was saying no to vaccines, our (then) pediatrician said he respected our decision, and didn't think at my daughter's age (5) and given that she'd already been vaccinated with most of them, that they were really necessary. But, he still recommended that we do the polio vaccine because that's pretty brutal at any age.

Hmmm, when we 1st got up to 5th, I was ecstatic. Now it doesn't seem good enough.....I guess PANDAS parents do not like sliding backwards after improvement! Maybe we should increase the abx?

That it came out of the blue...I'd be suspicious of exacerbation. But, before next time, it would probably help if you did some play therapy with him so he knows exactly what to expect.

We stay on abx because my daughter gets worse if we try to go off. Of course, you can't know if your child will get worse until you try....but I'd give it at least a month of stability before I'd try. When things are going good, I try not to change anything at all.

What I decided is w/o IVIG, my daughter was certain to have more horrible exacerbations. I knew that IVIG might make things worse before better and there was no guarantee that it would cause improvement either. But, because of the 1st certainty, I had to try anyway. We did not see nearly the degree of negative reaction that many on the forum have- but maybe that's because we didn't have much room to go deeper in the "worse" direction. Its been a boon for us, and looks like we are headed for monthly.

Don't blame you a bit...When things are going well here we try very hard to just keep treatment the same. If its working, don't mess with it. Nice to hear things are going well.

Thanks for sharing, that is really great to hear!

what is that/this? It would be "carrying" the streptococcus pneumonia pathogen in your cells, without exhibiting an immune reaction that would demonstrate infection- like strep A carriers, but with a different pathogen. so it is in the body.... would this be considered bad or good... does it mean that you can't mount a response??? Bad! And yes, for some reason the immune system isn't fighting the pathogen. It just occurred to me that the vaccine titer failure isn't because of the carriage- both the carriage and the poor titer response are because the immune system is not mounting a response to the pathogen.

what is that/this? It would be "carrying" the streptococcus pneumonia pathogen in your cells, without exhibiting an immune reaction that would demonstrate infection- like strep A carriers, but with a different pathogen.

Yes, I think that's what its saying. So, does this mean kids who respond poorly to pneumovax/prevnar should be checked for pneumo carriage?

Allie is on zith. She's not having a full exacerbation- just a few days of a a little emotional lability. Ibuprofen has helped and we've been working hard on self regulation, so she got some practice with that! Gma is allergic to macrolides, so she's on augmentin and steroid breathing treatments. She did a course of Keflex just previous to this, which did not help. She's had this for at least a month.