peglem

Well, what brought her out of it last time was a course of rifampin coupled with augmentin, then we followed up with an increase in her zith dose, starting with5 days at 500mg/day, then 500mg every other day, which she is still on. I don't want to bring the augmentin back on board because it causes awful yeast issues for her, no matter how much probiotic we use. I guess I need to get back with her pediatrician on this. I tried to make an appointment last week and the phone triage nurse informed me that "We do not treat behavioral problems at this office." She must be new! She did pass a message to her doc though, and he called me back and prescribed the prednisone. SFmom- I don't have any stockpile of abx, so I'll have to find a way to get more.

Enough denial! This is really an exacerbation, and I don't know what to do about it. It started @ 2 weeks ago w/ her LD IVIG. She just finished 5 days of prednisone....ugh! I hate this! Last night we had several hours of calm, so I thought the pred had made it better, but this morning was very bad. So, guess I'll take a few hours to feel sorry for myself and then figure out what to do.

Here's the tautine study thread: http://www.latitudes.org/forums/index.php?...&hl=taurine

I posted a study, not sure what thread, that taurine does indeed, lower CamKII levels...let me see if I can find it. If abx lowers CamK levels, then I'd hate to think what my daughter's levels would be if she hadn't been on abx when she was tested...hers was 242%, while on proph dose zith and I didn't think she was in exacerbation at the time, but we didn't have a baseline at that time.

Melanie, was that 1g/kg, or 1g total? How much does your son weigh?

from here: http://www.vitaminsdiary.com/amino-acids/taurine.htm I'm guessing that they supplemented w/ taurine because they thought he was dumping large amounts, causing low body levels?

Thank you. I really appreciate your detailed response. We've just been through 3 terrific months and she's slipping back. I'm scared, but know we can get through it. Did you and your wife have any idea it would be like that when you did it?

Bed wetting is one of the 1st signs that exacerbation is imminent for my 15 yo.

What I'd like to know is: Your child's age at IVIG? Was your child in exacerbation at the time of IVIG? What was the dose? Did your child have immune deficiencies at the time? Post IVIG experiences? Was it initially worse or as bad as exacerbation? I know this info is probably scattered throughout the forum, but now that we're looking at getting the proper dosage, I'd sure like to get an idea of what we're in for.

Meeeeee tooooooo!

Your joy over the improvements came through LOUD and clear! So good to hear...and what great insight you have gained! That stunning, overnight improvement w/ treatment is undeniable, and I think, more telling than sudden onset of symptoms. Yes, don't worry about that rug right now, its time to enjoy and celebrate while you can! What does your son say about the difference? He must feel greatly relieved?

I'm still scared- turning back the pages....there are many pages in this book that I don't want to read again! This guy wants us to do 2 of them a month apart, then check how its going. I think 2 a month apart is a great idea. I'd be great if there was a study that compared doing 2 a month apart (vs. just one). I believe Dr. B. is doing all his patients 1.5 mg every two months. He should be doing a study of the results! Ok Im jealous!!!How did you get this. YEA!! Did he say insurancce would pay?? Melanie I'm assuming- insurance is already approved and paying for the dose she has been getting. What I described above- that's all there was to it....unless her pediatrician called him w/o my knowledge- which is possible- the guy seemed to know more about it than the original treating immuno.

Yes, I know my daughter will continue to deal with a lot of problems after PANDAS treatment, even if/when the PANDAS issue is resolved. It just messed with her development too much and treatment didn't come until puberty. But, resolving PANDAS will give her a chance of gaining some development, and maybe getting back what she lost as well. Who knows? But this is why I was excited to see this website- I want to alert parents of younger kids to investigate this possibility, and hopefully have a better prognosis than my daughter.

It was pretty cool! At first, when I couldn't get her regular immuno, I thought, "oh, no! I'm never going to get somebody to change the dosage on another doctor's patient!" Then, I thought that maybe this was more than a fluke and we were meant to see someone else for a reason. I do believe in divine intervention and trying to let The Almighty steer the way!

I'm still scared- turning back the pages....there are many pages in this book that I don't want to read again! This guy wants us to do 2 of them a month apart, then check how its going.

Yeah, that shot is a big deterrent to getting it!

So saw the brother of the immunologist today. He's also an immunologist in the same office as Allie's. This was so easy! He said he read the report from Dr.L (she recommended 1gm/kg). But, he said, in reviewing the literature, he thinks that 1.5g/kg is the usual in the case of PANDAS. So, that's what he's ordering, over 2 days. I was all ready with my articles and information...didn't need it!

I didn't know amox was injectable. My daughter had a bicillan injection once, the strep was back w/in 10 days. The nice thing about injections, if they work, is that you avoid the GI problems. But, ay carumba! That was a huge needle and a lot of serum injected! I couldn't do that every month.

This is what happened when my daughter(15) started her period...She's had PANDAS for a long time, not properly treated until recently. In September, she had a strep related exacerbation and was treated with a hodge podge of abx. At the end of September, we did 5 days of prednisone, which gave her some relief, but her 1st period ever lasted 2 weeks and she was sick after the pred as well. But, I think more than the hormones, the 12 year molars all sprouted at the same time. (the dentist tells me for girls, this happens @ the time menses start) This gave us a clue to look back and realize that every time she had oral tissue damage, either from cutting teeth or a dental procedure, she had an exacerbation. She had also had a dental procedure right at that time. But that was good, because it helped us figure out that the strep was probably intracellular. And that prompted her pediatrician to get very aggressive w/ treatment- using tuberculosis drugs to try to clear her. And that gave us 3.5 months of the best times we've ever had! She's had 5 periods since then, and they have not prompted the recurrence of PANDAS symptoms, but have made her a little irritable.

Wha???? Can we hear more?

HeeHeeHee!

Does prednisone stay in the body for 2 weeks? Does anyone know about how long? I asked the pediatrician this just a few days ago (he didn't want her to get IVIG too soon after steroid because would confuse which is causing the effect), he said about 2 weeks. But we're just doing the 5 day.

Benedril makes my daughter ragey- then it knocks her out. We don't use it anymore.

I would think it would depend on what the autoimmunity is. My daughter's condition is PANDAS (I mostly hang out on the PANDAS forum of this board) and is triggered by strep, so we use antibiotics to prevent infections and ibuprofen or prednisone to decrease inflammation. Have been doing some IVIG (immune cell replacement), but need to seek a higher dose on that. The "Stop calling it Autism" site does a nice job with details on testing and treatments.

http://www.stopcallingitautism.com/index.php One child's story of recovery when it was discovered that his neurological problems were caused by an autoimmune condition. It has research links to some studies re: the immune system in autism. My own daughter's very severe autism has been caused by autoimmune problems, but we didn't find out until she was a teenager because doctors dismissed her problems as autism manifestations, instead of seeing the autism as a manifestation of an underlying problem.