peglem

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract: http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html Thanks Peg, I will print the information off and give it to her on Thanksgiving. When I mentioned to her that Pandas was caused by strep antibodies attacking the brain, she gave me the GET OFF THE INTERNET look. I then realized even though she knew what Pandas stood for and even agreed that strep could cause OCD symptoms, she didn't realize the specific cause. If you look at the pinned thread- "helpful threads" you'll see a lot of research links from Buster (mostly). Some of those might be very helpful. I have to think, being your SIL, she really wants to do the best she can for your kids- she just needs to see legitimate research instead of internet hearsay.

I wonder if she's seen the PANDAS Mouse Model paper? It pretty clearly demonstrates autoimmunity, as the mice developed PANDAS only from antibody infusions from other PANDAS mice (who got it from strep). Can't find the whole study right now (I'll look later if you want) but here is the abstract: http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html

Can he refer you to somebody who can order those tests? Say, an immunologist?

That is so beautiful and amazing! You've had such a rough journey, but how wonderful knowing you have all that love and support! Prayers for you and all your supporters!

Vickie has a very good point based on her experience. I guess I'm just fantasizing how nice it would be to not be on this crazy treatment treadmill.

Wow! So glad your daughter is doing so well! I think if a child can be well w/o the abx, then yea! Of course you'll watch closely, and get her in at the 1st sign of trouble, but wouldn't it be wonderful if you nipped it in the bud quickly enough that she won't need any further treatment beyond episodic abx?

Wow, I understand how you feel. You've worked so hard, fought so hard to get help and treatment for your child, but you know there is no guarentee that IVIG will work...with so much invested, you still feel like you're rolling the dice. But, if you don't give it a try, you'll never know and then be stuck feeling like you haven't done enough. Praying that IVIG is the answer for your child...

When we did the study the CamK came back 1st and the others came back w/in a week or 2. Its been @ 18 months since we did it.

What a terrific hub! Glad you got a break!

Thanks, maybe I'll look into getting one of those cast iron bra's. Santa?

I had something like this happen to me when I was in college- There was a group of 3 courses given in the same time slot over the same semester. After the final, you'd go to a bulletin board and get your score for the completed section and they'd post the location of the next section... I had a pretty stressful thing happen the day before a section final. I went the next day- looking at the bulletin board for my test score, and where to go for the next section. I had not taken the test at all, but I could remember clearly taking it, specific questions I had answered, everything. I was so confused when I went to that board (it was the same day as the test but I had missed it because I thought I'd already taken it) and the info wasn't there. I went to ask why- they said it wasn't posted yet- but I was so positive that I had finished the test and done well the day before. So, I went to the instructor (scared because how is somebody going to understand what happened, when I didn't even understand?) and told her what had happened. She was very nice about it and let me make up (retake???) the test the next day. But it was the weirdest thing- I just KNEW I had taken that test....

Okay, I'm hopping on a plane, will be there in a few hours to give you some relief (with collections of 5 of everything)... *poof* fantasy over! Really wish I could be there in person for you. Sending prayers for recovery for both you and your son! Allie has been having a tough time this week, too. This morning I snapped (she gave me a titty twister, so whatcha gonna do?) and called my daughter a really bad name- I never do that! I was being so patient as she struggled and working so hard at holding it together- but the final straw- I totally reacted on impulse. Felt sooo bad afterward. Just giving you some feeling of company. We've got IVIG tomorrow- I'm so hoping the counting to (insert chosen #) and then saying good-bye to the elevator works tomorrow. I know she'll try....

Maybe his brain has laid down a false memory of his having done it and he really cannot figure out his toothbrush is dry? When I was teaching (I know, retrospectively some of those kids had undx'd PANDAS) I saw this sometimes- but it seems like the kids were not so much lying as really convinced that their claims were true.

ASO and AntiDnase tests cannot indicate negative for prior infection, they can only show positive for prior infection. Low titers do not rule out recent infection. Many, many children (even those who do not have PANDAS) do not get a titer rise, even with positive cultured infection. Most docs are not up to speed on what low titers mean. The symptoms your child is experiencing- could be caused by a variety of infectious agents....do not accept "she just has OCD" as an explanation. OCD is a symptom of something...try to find the underlying cause. Maybe you can't and you'll just end up treating symptoms anyway, but, not finding the cause is not the same as saying there is no cause. I agree w/ all of the above- check for strep, check for mycoplasma, check for lyme. Sometimes, too, these things happen after an infection and its a one time deal (my daughter's pediatrician has treated a few kids that happened like that). You are amazing to have caught this so quickly...very good chance that it will not go chronic if its treated quickly.

We do 500mg every other day for 110 lb teenager.

Augmentin does a number on my daughter's gut- so worse symptoms.(although not so bad w/ diflucan as well) Omnicef does diddly for her. Zith is her magic bullet, but only at treatment doses.

I believe they are IgG- You could email Dr. Cunningham to find out for sure- or Kathy Alvarez.

I'm going to refer you here: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 And here is more discussion: http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&mode=threaded&start=#entry29305

Can you tell me more about the bolded? I thought I had checked out IgA deficiency pretty well, but this I did not know.

Yes, Zith is intracellular.

We have AZ's version of medicaid as secondary insurance for our daughter (since she was 3yo). They pay whatever primary (family's health insurance policy through work) doesn't pay for her. My daughter is considered permanently disabled, so we've not looked at long term consequences, since she will likely be on it for the rest of her life. I think it'd be tough if it was her primary insurance, as I think a lot more coverage would be denied.

My daughter's IgA was 11 before she ever did IVIG. That's pretty far below normal range. I don't think anti IgA titers were ever checked. She also has IgG deficiency. She had 2 LD IVIGs, 3 weeks apart, and then has had 7 HDIVIGs 4 weeks apart. She gets Gammugard, which the IVIG nurse tells me is low IgA. She has never had a negative reaction to the HDIVIG, even though she does the whole infusion in 1 day.

Well, we see regression with just ordinary things like cutting new teeth, maybe because of the inflammation. There is NO WAY to do dental work, even an exam w/o sedation in my daughter's case. She just can not be still enough for somebody to stick sharp things in her mouth.

For myco, you'll need an abx that takes care of intracellular microbes.

We always, always get symptoms w/ dental work..