fuelforall

Will plagiarize NancyD to be of help to you. If she were online, she would repost this for you. In MA: Robert Fuhlbrigge, MD at Children's Hospital Boston and Elizabeth TePas, MD at MGH for Children at Newton-Wellesley Hospital both order IVIg for PANDAS. Michael (thanks,Nancy)

Debbie, Obviously, be aware that IVIG produces negative reactions in many for weeks after. It will be rocky. My son is three weeks out of IVIG and no improvements, except for a few glimmers the first day. Higher hyperactivity, anxiety, anger, etc. Assume you're seeing Dr. B in Ct. He sez many have to wait 6-8 weeks for benefits to be seen. Keep on the abx. Hang on, it's a bumpy ride! Michael

Thanks, Ronna, It feels like the only schools in the USA that use it are kooky schools that wouldn't want my son. Wonder if there is a way to do this. M

Ronna, Lovely. Re Arrowsmith, do you live in Toronto? Not sure how to pursue this but I am definitely interested. Downloaded all the info on it. Michael

might be ok to do 875mg Augmentin twice daily. If your child is 50 lbs or more, should be fine.

Hey, SF MOM you talking to me? I was just in SF visiting family with ds9, it was nice to get away. My son is on 150 mg Clindamycin twice a day. Wondering about a steroid burst, have a call into Dr. B's office.

My kid's only 9 and I get your feeling. Boy, do I! But you've done IVIG and it's been three weeks. Give it six, if you can make it. We're approaching three weeks ourselves. It's #&$%_! Hope you got the appropriate IVIG dosage. I thought intuniv was mainly for attention issues, a little calming, I guess. Are you up to three pills a day? No, the facilities you mention do not help. They may make matters worse. Get relief, go on vacation, ease the pressure any way you can. If he's not in school, you might as well try to take him some place fun. Visit family, the kids do better out of familiar environs. Good luck... of course Michael

Alex, how severe was your child's PANDAS, would you say? My son is pretty hardcore. Michael

Very kind of you, Amy, and thanks for the great post yesterday. Can't wait for the next month to go by and hopefully begin to see healing then. The first time he had IVIG, it did not take but it was not the right dosage, a bit low. This time we did the Dr. K protocol. I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be. Hang in there!!!

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc. Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.

Advil for a three year old? How much? Children's ibuprofen of course? He's 38 pounds. Help!

Guatemalan.

Hm well, here is my game plan. Ds3 is getting tonsils out Tuesday. I will let him heal, get the abx and retest titers in a month or so after and possibly do the Cunningham test. It is disturbing that ds3 is adopted from a foreign country. so it's not in my family genes, if you know what I mean. He does have sensory issues and some OCD tendencies, I think. But it just seems so early to evaluate OCD tendencies. I will be watching him closely. He conked out last night without trouble but there are still lingering issues.

My three year old with sligtly high strep titers (203) has been acting very strangely. At bedtime, he won't settle down. He giggles like a crazy boy, no apparent reason, may run around and start throwing things, refuses to settle down. Then he screams he wants Mommy. Then he screams he wants Daddy (daddy is sitting there in front of him) He has always had questionable neurological issues- he has poor balance which we think may have been related to hearing issues but he never saw anything in front of him below waist level for the longest time. Sometimes he will growl and not use words. Or he will just lie on his back and squirm. Tantrums are one thing, odd behavior another. So... what the heck? Is he being a terrible three? Should I relax? What kind of test should I do? He is very smart so... I don't know what that means in the scheme of things. Michael

Hm well these are all pretty scary posts for those who can't wait for some relief. Momtocole, why did he backslide so at the end of his treatment? "We almost had him back to school" Yikes, what has he been doing outside of school? It's a big issue with my ds9, getting him back to school. I guess my only rec for kids post IVIG during the rough period is... go on a vacation. My son had horrendous anxiety the night before and morning of our departure but suddenly his mood switched and he was ready to go. We've been away five days out of the hothouse of our apartment and it's been beneficial. He pretty much gets whatever he wants although I do insist on some behavior changes here and there. His silly brain has been kind of bad but his grandmother and I found out he responds better to one on one treatment, without sibling or other parental distraction. He does very well when alone with his grandmother. So he's been no gem but we're eleven days out from IVIG and maybe healing will come a little more quickly. M

Yes, my ds9 gets them a lot. HIs allergy numbers are IGE 1540 or so. Very fair skinned.

so the first month (nov)pretty much status quo or worse, then as dec rolled in you saw some benefits???? It's that six-week point again. Gad, I hope I can make it to six weeks!

Well, he's pretty nutso right now. Wine is hard to enjoy as much. Why are you still doing IVIG? Are your son's numbers low? Dr B said my son's numbers should be up in the normal range (IGG subclasses) after this iVIG treatment we just had. M

Clindamycin, 150 mg twice a day. It's the only thing that has brought strep numbers down a bit.

Last Wednesday and THursday. Dr B- Standard dose 1.5 over two days

My son was crazy enough before IVIG. Now he's even worse. A lot of parents talked about how it takes a while to come down and the antibodies to settle, etc. That it gets better later. He is extremely hyper and mood swings are high. So in the meantime, what do you do? Any med effective for anyone? Thanks. Michael

What are those scary side effects of Clindamycin exactly? I understand you don't want to be on it long term but....

http://www.gi.org/patients/women/asprin.asp A useful link, re NSAIDS and aspirin. Seems clear there are no salicylates in NSAIDS, else people would just continue to take aspirin.

Does anybody know more about this replication study? My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents. Just sayin'.

My family, just heard. My three year old son has elevated antistretolysin 204. Not sky high, but when he's around my DS9, sparks fly. What to do? Put three year old on abx and try to bring it down? I tested normally. My wife has not been tested yet. Michael