peglem

Lamictal is a strange drug- the manufacturer puts the half life at anywhere from @ 8 hours to a week! And levels seem to be affected by everything- other meds, hormone shifts(female stuff), illness, just everything!

Well, ear infections can be caused by strep. But also, other pathogens can cause tics and OCD.

Just one day for allie.

I can only speak to Allie's experience. I'm sure that it varies from person to person, and your child is on a very low dose, so no taper should be necessary.

Well, Allie is no stranger to valium...good track record there. No stranger to risperdal, either, but it sure is a double edged sword for her. Helps in the short term, but the wearing off is brutal.

Yes, that's what I mean! And how in the world, w/ PANDAS causing so many psych symptoms, how can you ever tell that its now the meds that are causing the psych problems and not the PANDAS?

We tried it years ago, before we knew about PANDAS. Allie got much worse on it, but that may have been a PANDAS flare confusing things.

Hey, Mel! Allie's been on lamictal for @ 3 years. I can't say its been a bad med for her. Its just that lately things have been getting worse and she's not responding very well to PANDAS treatment like she has in the past...so, I thought maybe we should try tinkering w/ meds. Just that I wanted to go in the opposite direction that her psych wanted to go. I'm wondering if the headaches were caused by the lamictal, too. So far NO ibuprofen needed today, and I've been giving lots over the last 2 weeks! Don't want to go to celebrex unless the ibuprofen isn't cutting it anymore. Her ped. sent her to pain management a few months back, and I think he was hoping they would suggest celebrex for her and then he'd have no problem prescribing it. They did nothing but said talk to the psychiatrist about it.

So, Allie has been doing really awful lately with the fight or flight meltdowns and aggression. Plus its been 2 weeks since she's slept through the night. Saw her psychiatrist @ 1 1/2 weeks ago. I've been praying and praying what to do about this and have felt led to get her off lamictal, thinking maybe what she's having is side effects now that her immune system is healing. I had her reduced to a relatively low level. The psychiatrist did not think we should try taking her off of lamictal until she is stable, and rx'd depakote as an add on + melt in your mouth risperdal for quick recovery with those F or F episodes. I have not filled those scripts yet...and still feeling like I need to X the lamictal (inspiration from God?). So this morning, for the 1st time in weeks, she did not wake in the wee hours. She didn't get up until about 9:30, and instead of coming in to attack me to get me up, she was just happily playing in her room. So....since she was already @ 4 hours late on her lamictal and happy, I just decided to see what happens if I don't give it. She has been happy and calm all day (so far). I haven't even needed to give her ibuprofen. Still really stuck on her computer (but she's been for the last few weeks anyway). So then I checked online for info on lamictal withdrawal, and its bleepin' SCARY!!! So, now I don't know if I should go ahead and give her a 1/2 dose to prevent all those withdrawal symptoms, or just deal with them if/when they happen. I do have some benzos to help her through if needed. I'm afraid giving her 1/2 dose will end this nice little respite we're having. Any ideas or advice? How do we know when its time to stop the meds that were treating symptoms? I mean if the PANDAS treatment is working the symptoms that we were treating w/ lamictal should be resolving, right?

Yes, absolutely! If they had anything useful as an alternative to my crackpot ideas then I'd be willing to completely accept the crackpotism as a "my bad."

I've never heard that it works only once. My understanding is that anytime you get a build up of rascally auto-antibodies, removing them through PEX would provide relief.

Could have sinus problems and the punch loosened something? Is she on any medications? My daughter sometimes gets nosebleeds- but especially when she gets steroid nasal sprays. I don't understand what you mean by the "aggression or lack thereof." Is your daughter aggressive? Or does she have a lack of aggression?

My daughter has been on abx for @ 2 years and I'm still not certain its gone! But, even if it is gone, exposure, which almost certainly is happening at school, will still trigger her immune system to make the antibodies that cross react with brain receptors...so you could try keeping up the abx until all or most symptoms resolve and then try either a lower, prophylactic dose or going off of them altogether. If symptoms come back- then try again. Sorry, we are all just trying to figure this out for our children w/ help from a very few doctors. There are more questions than answers at this point.

I don't think that rise is significant enough to be well, significant. Do you have any recent positive strep tests or cultures? You may want to check for immune deficiency. My daughter had many, many positive strep tests but titers were almost always low. She once had a rise from 34 to 240, but, although the 240 was technically "high", docs still thought it wasn't high enough to suggest PANDAS. I think they didn't know what they were talking about, but anyway, low titers just don't appear to mean anything- including that there was no infection or that your child is not reacting to strep w/ auto-antibodies.

I think when symptoms (in this case tics and mood) resolve or improve w/ abx its a pretty good sign that the symptoms are infection and/or inflammation related.

I think the psych meds muddy the water too much. PANDAS makes the kids so unstable its always hard to tell what the med is doing vs what the PANDAS and/or immune treatment is doing. And its hard to effectively stabelize PANDAS kids when their condition has so many variables. That being said, I think levels of desperation and misery have a lot to do with this decision. And sometimes its a matter of getting some relief before you hit the breaking point.

Yes, get Baxter's kit! A week before my daughter's IVIG we IVIG'd every stuffed toy in the house. It really, really helped her get through it w/ a lot less anxiety than I expected her to have.

Its my understanding that any IgG testing after IVIG will be inconclusive since it is unknown if the results come from the patient immune system or are of donor origin.

We've only ever used the generic (flucanazole) and it has been fine for us. I don't think this is one that varies a lot like the generic psych meds or AEDs.

If my child is very yeasty, i get a die off reaction w/ diflucan. Its pretty quick- w/in an hour of dosing so I usually give it when she's starting to fall asleep so she sleeps through that time.

I order mine from kirkman's here: http://shop5.mailordercentral.com/kirkmanlabs/prodinfo.asp?number=0240-060

I'd try s. boulardii!

I think bactrim is the recommended rx for staph, but not particularly good for strep. Maybe add bactrim to the zith?

Did you have a previous script for Nuvigil? I just call a refill in to the pharmacy on drugs that I want refilled (even when there is no refill on the label) and the pharmacy contacts the docs office to get authorization. I'm not familiar with nuvigil though. They might require a physician's visit before it can be represcribed- that's what we used to have to do for Allie's benzos. Right now we're having trouble getting a refill for diflucan (of all things) because insurance says it needs pre-auth 1st.

I can only find the full text in German. But this researcher, norbert muller, has a ton of stuff on infectious/inflammatory causes of psychiatric disorders.