peglem

Gosh! Thanks!

Buster, thanks for taking the time to give us a review at the end of a long day! And JAG, thanks for telling us about your conversation w/ Dr.K, re: early sudden onset. Oh, and I absolutely agree w/ Dr.K about the "comorbids" likely being part of the PANDAS symptoms and not a separate disorder. I'd sure like to have information about his theory of IVIG "resetting" the immune system...I can't fathom how/why that would work and can't find any literature on it, either. I want to understand more about that.

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Okay, but, PANDAS is a kind of autoimmune encephalitis, or post infectious autoimmune encephalitis. It just seems like insurance is looking for a way to not cover.

Think they're still partying?

Sounds like you hit the Jackpot! Congratulations!

Did he start ESY last month? Just wondering again about the exposure thing, looking for variables. Do you journal? (I try, but just am horrible at keeping it up!) Seems like that would help to identify what things were different last month.

Allie does have an older sister (18yo) who has OCD that she hid from us until she was nearly 18- we saw some stuff earlier, but nothing that couldn't be passed off as quirky behavior of the sibling of a special needs child... But, it really was much worse than we realized. Trying to get a doctor to look at PANDAS at her age is difficult, and I suspect her problems are more from mycoP. I didn't include her on the survey as a PANDAS sib, because she hasn't been dx'd as such, just something I suspect. She's never had a positive strep test and has never had elevated titers- but has had walking pneumonia a couple of times and had an ear infection at 2 1/2 yo, that just would not clear w/ antibiotics- burst eardrum- the whole drama.

I'm still not certain about whether you've seen improvements with the 1g/kg dose or not, or is that something you also are uncertain of? You're in a difficult situation because you're not doing a very low dose or a very high dose. I think I'd at least try a higher dose, too.

I spoke to Dr K recently and he said he will be there. He told me there will be a big announcement while he is in Washington. Stay tuned. Well, I think you just got nominated to tote your laptop to the conference and post that ASAP!!! Any news?

Do you think he's been exposed to something? Try to make sure he gets a ton of water!

Welcome to the board! you'll get a lot of help and support from many wonderful and dedicated people! Here's what I think: Yes, PANDAS is caused by certain antibodies the body makes in response to strep, not the strep itself. The antibodies take roughly 4-6 weeks to dissipate, but will only do so if the strep is completely eradicated. Yes, strep is everywhere and just exposure, now that her immune system has "immune memory" can trigger more production of the rogue antibodies. So, it is a good idea, in my opinion, to give her every chance to fight strep as you can. I think that it is possible, but its also possible that she is hiding compulsions when she can because she knows it is weird behavior, can't explain it, and doesn't want people to think she's weird. Experiences I've heard about on this board w/ psych meds vary. My child's experience with psych meds, and we've tried a lot of them, is that they ether do not help or they make things worse. But, even if they help, it makes it harder to tell if the PANDAS treatment is working or not, since the meds may be masking symptoms.

Its a good thing you don't mind looking nuts- you'll get that a lot! Its not unheard of for people to make up stories to make getting the tests easier. I haven't had to because I had a very good relationship w/ my daughter's pediatrician.

You could have them do the rapid and send out for 72 hour culture if that comes up neg. The titers (ASO, antiDnaseB) is a blood test. I grew up in Montana!

Thanks for sharing and brightening my morning too!

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins. I don't have anything useful to say about #2 & #3. I had no idea that Dr.K says this. Who is Jamie?

Thanks for the heads up!

Also, valerian root has a relaxing effect, similar to valium. We've actually been kicked out of a lab b4 blood draw, but only one with this very witchy manager. Too bad, because its the lab closest to our house.

We don't get side effects, either. Your experience is good news, especially since our next IVIG in August, will be a one day infusion. Hope there is no storm following your calm!

I think you're doing exactly the right thing, actually. The steroid suppresses the immune system- a positive response indicates autoimmunity, because improvement is seen when antibody production is suppressed. But, at the same time, if there are underlying infections- they can become stronger w/o the immune system mounting a vigorous defense. The abx will help the immune system keep those infections at bay. And yes, I believe most of our kids were on abx at the time of the steroid burst.

I think its worth a try to take the ibuprofen before you go to sleep. It does have anti-inflammatory problems and helps with circulation.

I've just understood it to be a "migraine thing". I guess I've been lucky...no side effects from the imitrix! This link says the morning headaches could be related to restless leg and/or sleep apnea. http://themigraineheadachecenter.com/what-...he-morning.html I saw that website! That's actually the one that made me wonder about sleep apnea. Earlier I asked if it was possible to not wake other people if you had it. My Dad has horrible sleep apnea & Narcolepsy, so it's not out of the question since I have Narcoleptic symptoms. Scared to get tested for apnea after seeing the affect it's had on my Dad though. He was hospitalized some twentyfour times last year? *shiver* Oh well. Talking to my Mom about scheduling the appointments next week. Then we'll know a little bit more! Or, at least be closer. Since I don't sleep much when I have my RLS while menstruating I really can't report any headaches during that time though! ANOTHER RANDOM UPDATE. Called Dr. Kovacevic's office about changing my appointment to a phone consultation. In-office appointment would have cost $35 with my insurance, but apparently an hour long phone call is $500? The receptionist told me that & I was just like "Yeahhhh.... Go ahead & just cancel the appointment." Disappointing, but oh well. Ah, insurance will not pay for phone, only exam. Sorry to hear that, maybe you'll get a chance though, with your aunt living there. About the aspartame....really think you should reconsider, apartame is famous, very famous for causing headaches, among other things. Have you tried taking ibuprofen as a prevention before you go to bed?

Prednisone gave my daughter the soaking wet night sweats. Hmmm, it seems like something else did too, but I can't remember what. edited to add: Oh, yeah, I remember now, the low dose IVIG caused that, too.

Oh, Brandy, that's a wonderful story! I mean, I'm sorry it started rough, but glad you were able to get away from work to help. And, your "mighty mommy" skills accomplished what 2 grown men could not!

Did you go back a few weeks after the abx to see if the strep was really cleared?