peglem

What I think, is that many strains of strep are a part of normal bowel and skin flora...there's really no avoiding it. Its all about balance. If probios containing strains of strep cause a bad reaction in your child- don't use them. They are probably skewing the balance of the flora.

I dumped a huge load of votes on skip program....but check out our rank 23 competitor.....LOTS of votes from Skip program.

It does no good to run down the street naked, unless you have a pineapple on your head. I thought everybody knew that! My daughter gets a little sick when she finishes a steroid burst, too. She's got a pretty weak immune system, so I think the steroids just allow things that are just barely under control by her immune system to get a little stronger.

aarrrgh! I'm nearly at the end of voting for a rather lengthy proxy list, and I can't get the darn page to load!

The way I got treatment for my daughter was by finding and presenting evidence...to the right docs. It never worked at the local children's hospital, because the physicians there are all afraid of the oversight committee. I have a feeling that those doctors who claim to provide only "evidence based" care are really only providing "policy based" care. The evidence is there...sometimes policy trumps it!

I'll go look for it. Its really literature on autoimmune disease in general, and higher dose being anti-inflammatory vs. pro-inflammatory low dose. I think we had a thread on it a while ago. I'll see if I can find it. Here's the thread. It has references to quite a few papers: http://www.latitudes.org/forums/index.php?...ig+inflammation

I'll go look for it. Its really literature on autoimmune disease in general, and higher dose being anti-inflammatory vs. pro-inflammatory low dose. I think we had a thread on it a while ago. I'll see if I can find it.

great sound promising hope this works...whats the plan every how many weeks till the next one? melanie We're supposed to do another one in 4 weeks. And Latimiere set that up with your immunologist right.Im soposed to see her June 4th I dont think shes going to convience my md to increase the dosage.So I dont know why Im going to go, Melanie Not exactly. The immunologist here said he would do IVIG IF it was recommended by Dr. Latimer. She did recommend, but only specified a dose because I asked her to. She recommended 1g/kg. The immunologist ignored her recommendation and decided to rx small dose, standard for immune deficiency. When we had problems with that, I couldn't get an appt. w/ her reg. immuno because he was all booked up. So, we got in to see his brother at the same practice, who told us he'd reviewed Dr. Latimer's recommend, but the literature on PANDAS treatment said 1.5g/kg. So, we said, "yes sir"

great sound promising hope this works...whats the plan every how many weeks till the next one? melanie We're supposed to do another one in 4 weeks.

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

1st, some sympathy: "awww, poor Melanie!" So could that be why you thought the intuniv wasn't working this week?

Beautiful story, well written, classical Buster style!

We finally moved! At 26 now...again.

My daughter is on 500mg zith every other day. I have no plans of stopping that anytime soon. If she was to remit for say a year, maybe 2, I might consider it! She was a strep carrier, maybe still is, or is again. I don't know. In december we did a treatment to try to clear carrier state- rifampin/aug combo. We went on the current zith dose immediately afterwards, w/o checking if she was cleared or not. Her pediatrician thinks that with her weak immune system and strep being so prevalent in the environment, there is no way to eradicate strep in her. But that december treatment got us 3 really great months. She went downhill again after 2 low dose IVIG treatments. She just finished her 1st PANDAS sized dose and we're looking at redoing the rifampin/aug when we see her doc on Monday. I used to worry about keeping her on abx for so long...but she really doesn't do so well without, so for now we plan to keep her on.

My child is nonverbal. I can only guess. I realized she couldn't help it on a trip to disneyland gone bad. I told her I was so sorry that this was happening to her and I didn't know why, but that I would help her. Everybody was "consequencing" her for her behaviors. At that point, I was the only one she could turn to with any hope of getting understanding and patience. I still make lots of mistakes- but, she seems to know she can count on me. When we talk about her to doctors, particularly about her behaviors, she gets upset until I explain to her that the doctor needs to know so they can figure out a way to help her. Then she's okay with it. So I see signs that she knows and trusts me. I hope you can get your son to forgive you and see that you just didn't understand before, but now that you do understand, you'll do whatever you can to help. I don't remember how old your son is?

I apologize. I went back and reread your post and see that you were saying that it interferes with functioning. But, I still don't think you've ruined him. My daughter was nearly 12 before I really realized that she could not help some very severe behaviors. I felt horrible that I had held her responsible for it all those years. But, she knows now that I will help all I can and relies on me.

I'm sure you haven't "ruined" him. What you can do is sit down and let him know that you didn't understand before, but now that you do understand, you are going to do whatever you can to help him. He'll be relieved! And remember- all people/kids have "quirks"- little things that give them a bit of anxiety. Its only pathological when it greatly interferes with functioning.

Thanks Kelly! You guys are awesome for setting this up and taking charge of it! It sure got overwhelming and crazy, really fast! I felt kinda bad making suggestions when I have so little to offer in the way of time to actually do the work of organizing!

Check out intuniv here: http://en.wikipedia.org/wiki/Guanfacine I know wikipedia is not always completely accurate, but for a quick, easy to understand overview, it works.

My daughter's immuno ordered the kind of ivig that has almost zero IgA.

Completely understandable, Vickie. I wasn't meaning to be critical and I know we're novices at this sort of thing. I still think we've got a good shot at it. But I do find myself each day, wondering just who the heck should I vote for... and lots of scattered advice. Maybe just one thread can be established and the others locked? I don't think anyone has the time to really, really get us all organized, so I thought something like the above schedule might just work, because everyone would be able to be on the same page that way. I in no way hold you responsible for the confusion and I'm grateful for and in awe of those of you who took the initiative to get this project up and running. I JUST WANT US TO GET THAT GRANT!!!!

Dr. K told me that unfortunately its an ABSOLUTE CONTRAINDICATION for possible IVIG treatment. Have you heard about any allergies to penicillin with this low level IGA? Andrea Well, I'm sure he knows better than me! What does he do with kids who are IgA deficient- surely you're not the first. The literature says that IgA deficiency is the most common immune deficiency.

My daughter's IgA is low- <6 (4), and she does get IVIG. Her doctor orders a type that has low IgA, and I think its only dangerous if your IgA deficiency is caused by anti-IgA antibodies. Did Dr.K say you couldn't do IVIG? I think the low IgG increases slightly the low risk of reacting to IVIG, but does not preclude IVIG altogether.

ACK! I've got a kid going psycho on me w/ IVIG, a nephew who just had surgery for a malignant tumor on his spine....and, well lots going on! There are too many threads about this project! We're all very busy, because we're PANDAS parents, so can't we make it very simple? I vote for myself and have 4 proxy votes...but will take on more proxies if somebody wants me to. I'm thinking of something like this- If you vote between: 6:00 & 7:00 AM, vote for PANDAS, SkyU, SMA, Sophie's...(4 of our main supporters) and vote for who ever is in the 5K positions 11, 12, 13, 14, 15. 7:00 & 8:00AM, vote for PANDAS, 4 more of our main supporters, and who ever is in positions 11,12,13,14,15 of 25K 8:00 & 9:00 AM vote for PANDAS, 4 more of our main supporters, and who ever is in positions 3,4,5,6,7 of 250K. Then cycle that throughout the day- all anybody would need to know who to vote for is what time of day they are voting....we'd be sure to hit all our majors and recruit those who are just out of reach of the top- and thus working harder for it. WhaAt this point I've read so many posts @ who to vote for and what not, my head is spinning. I need clear, simple direction. Is there anybody who has the time to put together a schedule for us?

I've never read that story...sounds interesting. And I wish jelly beans would work!