peglem

We should find out if there is a way to do a survey type template that would put the info on a chart. Then each poster could add their own child onto it as they please. I agree the chart is a good way to compare information, and look for patterns.

Sucking in my breath in awe. OMG, what a wonderful, wonderful day for you and your family! If its only a dream...DO NOT WAKE UP!

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question? Yes those are what I am talking about.... the thing was that the dr. was going to do the titers prior to the strep in my house because *banging my head* he said that if the amox didn't take care of stuff maybe it wasn't pandas... .so he said he would run the bloodwork because what's the point of the antibiotics if he doesn't have high titers... *banging my head more* He was not the dr. I saw yesterday and today with my others so I couldn't ask him... but I am supposed to go tuesday for that bloodwork. Maybe he will just want to run the culture now but of course the fact that we might be dealing with active strep is messing things up for my trying to figure stuff out..... Ironically after telling the dr. that I didn't think the amox was doing it, I am not sure I was right... he's still clearing his throat a little but it is better than it was... unfortunatley we just finished a month and a half on the amox and it has now been stopped as of a few days ago.. so of course I guess that means my ds can still get strep now. Something good came out of all this though! The dr. I saw today told me he would be happy to do the blood draw for the cunningham test. I am just waiting for the kit. Unfortunately this dr. doesn't seem comfortable treating pandas but not for lack of believing... just said he doesn't know enough about it and treatment... one of the other dr's seems comfortable with prescribing antibiotics but seems to be going by the low titers = no pandas thing and is a big fan of amox and said that amox would kill strep and if it's not helping it must not be Pandas too. But if we know we know he has strep and also know he had it in Sept. wouldn't low titers indicate it's clearly not proving anything for him? We had this bloodwork done last year and it was within normal range... that dr. I saw said he felt ds still had PANDAS.. that it would have helped him with confirmation but that low titers didn't rule anything out... unfortunately that dr. no longer takes insurance. Would it help, do you think, to bring in a copy of the diagnostic criteria for PANDAS? I mean, what you really need, (and apparently what they are not clear on) is an association of symptom exacerbations with + strep. The ONLY reason for running those titers is to confirm that there was a missed strep infection (so to establish that association). Maybe the doctor who feels he doesn't know enough to treat can be educated? I'm exasperated for you!

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question?

Most people who know for sure, I think, are ones who have had a very sudden and extreme flare up up symptoms or know exactly when the 1st strep infection that produced symptoms was. "Long time " is a pretty relative term. I believe we've been dealing with this for 12-13 years!

Yes, I think DD=dear daughter. I always use the word daughter, just because I like it better, and some days, she's not such a dear!! I don't think we have a list, but please, if you see an acronym you don't know, just ask.

Buster, I love that idea! And thank you so much for pulling everyone's info! What does the "report" heading indicate? That would be a great resource to pull up when somebody posts about their child, so we don't have to keep asking for information that they've already given in various posts. Could we also show if/when the child has done PEX or IVIG?

I don't think we have a list, but please, if you see an acronym you don't know, just ask.

We did a 5 day course of pred. I think it was 40mg/day. We did not taper down...but, I'd sure want to be very careful and get the advice of your doc.

I get the "history" of the immune system...like the recipe book for making antibodies that have been seen before- I don't see how to erase the recipe for strep antibodies, so I suppose we must prevent strep? But, I don't understand "retaining antibodies with donor antibodies/IVIG." Can you explain what you meant, SF Mom?

It has taken us years to get my daughter to tolerate having her hair washed and brushed and combed...but she hits her own head VERY hard.

I love the recipe analogy! PANDAS flavored antibodies....I sure get that!

In a similar vein....Its really great that she is not static, is humble enough to know she doesn't know it all, and is willing to adjust treatment when she learns more. THAT, I think is the difference between a butthead doctor and a real one!

Woweeee!!! That sounds fab!

You, know what? You weren't stupid...you were a dedicated, responsible mom, following the advice of someone who was supposed to have the expertise to guide you. That's what doctors are supposed to do, guide you medically. I know doctors don't know everything, and I can even excuse them for not knowing about or recognizing rare or confusing disorders....but if they are vaccinating thousands of children with a wide variety of vaccines, I would think it is not unreasonable for them to develop some expertise in this area. Don't leave it up to the people who sell these things to keep you informed... Doctors refuse "unproven" treatments all the time- why aren't they looking carefully at the vaccine issues?

I can't, obviously, dx your son, but something you could try, if your pediatrician is amenable, would be prednisone. Prednisone supresses the immune system, so if symptoms are reduced with prednisone that would be an indication that they are related to an immune reaction. Some of our kids have flair ups just from being exposed to strepA, so even though he tests neg. for strep it could still be PANDAS. I find it ironic that you were so easily given the PANDAS dx, when so many of us are begging physicians to check it out for us and finding it so hard to get them to see it or consider it.

I *think* nitrous oxide opens the BBB. My daughter just had a root canal on 10/13...She got sick (spiking 104 fever) that same day and ended up w/ severely amped OCD when the fever was brought down. She's doing somewhat better now. Your daughter will come back- hope the b-day party doesn't go too badly. Well, I hope it goes really well, actually! Is your daughter on full strength abx?

Mammom, If you email Dr. Cunningham's lab with questions, they are very, very good at getting back to you and explaining things!

I don't know if it is PANDAS related or not...my daughter (15yo) has 2 baby teeth that have not come out, but she does not have perms to replace them. On the 13th of this month, she had a root canal on one of them...and promptly got sick with something that-spike 104 fever...it got better w/ high dose abx. But her OCD amped up! On a related note, when she was @ 4 or 5 yo, she seemed really "off" for @ a week- super ragey (all 30 lbs), SIB like crazy...couldn't figure out what the heck was going on...she wouldn't eat....then she wike up one morning with a swollen cheek (oooh, I felt like such a bad mommy!). The dentist put her on Abx and scheduled surgery to take care of the abcess. When he got in there to do the work...she had 10 cavities!!!! and not just 1, but 2 abcessed teeth. The odd thing is, from then until now, she has not had another cavity. She'd been getting check-ups every 6 months....its like all 10 of those came out of no where. And of course, now I wonder if it was strep related. And 1 more thing- right now (at age 15) her 12 yr molars are erupting-all 4 of them.

Yeah, you're right.

Part of the problem with getting information out is that the NIH Pandas information is out of date...if parents and doctors look there for "official" info- they're going to read stuff about abx prophylaxis not being safe and effective, treating tics and OCD symptomatically with psych meds, and unproven and risky use of PEX/IVIG. If a medical authority like this doesn't keep up, is it any wonder so many doctors are clueless? And while parents of children with different versions of PANDAS may be misled by the Sammy story- doctors, if they look, are going to favor the "official" info over Sammy's anecdotal story.

That's where its so different here. I'm completely thrilled that that treatment is working for you, even though my experience is different. Its like we have learned that PANDAS is not just our child's version of it and we respect and support each other. I've no doubt that Beth Maloney's story will help many many people and I want that- just think there is room for all of us on that ship!

Email Dr. Cunningham with a brief history of your child's symptoms/illness and ask if he can be included in the study. Its pretty simple!

My experience was that the reason my daughter was dismissed by doctors was precisely because she didn't have those glorious ASO/AntiDnase titers....so can you see where I would have trouble supporting this view of PANDAS? I agree, we need the publicity and exposure...but I really hate to reinforce the very notion that denied treatment for my daughter.

Is he worse, do you think? We have not done IVIG (yet, but hope to by the end of the year), but it seems like some kids get worse before improvements? I know how bad constant rages can be. So sorry to hear. Hang in there, praying you see improvement soon!