peglem

I was thinking you'd have to campaign to educate both doctors and schools. Whenever I've brought it up to schools, they want medical confirmation.

I believe that Swedo only followed the kids in her study for a year. My thinking is that if PEX works by removing the offending antibodies, then sooner or later the body will be triggered into making more of them; but if IVIG works the way they think (by somehow resetting the body's immune cells), then IVIG would be the longer-lasting treatment. (Again, my guess is probably as good as theirs!) Yes, she followed them for a year...but had 1 (as I remember it) from each group who relapsed. Also, she explained that IVIG, esesntially does the same thing as PEX, just in a different way: The IgG administered through IVIG removes the host's antibodies (because IgG from a nonhost would recognise the host antibodies as foreign). At least that's what I understood. I'm not recommending one over the other-they both sound plenty scary to me!

She got 2 mg/kg/day, which I believe is the maximum recommended pediatric dose generally, for the first three weeks. That is apparently the dosage that they give for acute Sydenham's Chorea, which seems to be the closest thing to PANDAS (per Swedo's theory of PANDAS) that has an established treatment protocol. See http://linkinghub.elsevier.com/retrieve/pi...887899405005436, where SC subjects got 2 mg/kg/day for four weeks, and were then tapered down. She is also on Zoloft and penicillin. We are not considering PEX under any circumstances--there is a substantial risk of a serious infection and other complications, and I am certain that the five-day, invasive the procedure would be traumatic for our child (not to mention for her parents). If her symptoms return, we would consider IVIG, but we would probably try another round of steroids first. That's interesting. I watched the video of a presentation that Swedo gave at a DAN conference...she talked about her PEX/IVIG study. She said both procedures are "a big deal" and thought they should be reserved for cases that can't be resolved in other ways. But seemed to think (from her own experiences with this study) that of the 2, PEX was safer, and the results more immediate. She talks about the PEX kids being completely back to baseline w/in the week that they were in the hospital. A few of her IVIG subjects (I seem to remember 3) contracted hepatitis C from the IVIG- this was in the '90s, I think, so they may do a better job of keeping the stuff clean now. I'm trying to avoid both of those options, too.

Lab error? Maybe the culture swab didn't have enough "goo" on it? Did they do the swabs separately? I think there were times when my child showed negative just because the swab wasn't done well. My daughter really struggles and fights the swabbing, so sometimes they miss the right spot to get a good sample.

Well, I have to say it varied with me. I knew that my daughter had most probably already exposed everybody, so sometimes, as long as I felt she was able to manage, I'd send her anyway. Otherwise she would have been out of school way more, and she was already out plenty- b4 proph. abx, she was at the doctor at least every 2 weeks, sometimes as much as twice a week. Testing positive on a Friday was always good, then I didn't have to decide!

Do you use a syringe to give liquid meds? My daughter learned to swallow pills by us putting the pill back on her tongue and then giving a couple of syringes of water. Once she learned that pills don't taste as bad as liquid meds, she really took to it. We still give pills this way.

I had an Rh- friend who was married to an Rh- man. The doctors always insisted she get Rhogam anyway, even though its impossible that the baby will be positive.

Wow! Just finished watching this newer one... Wish I could get a written transcript....she has a good explanation of both PEX and IVIG. She still maintains they should be reserved for worst cases.

This may be way out there- but back when my daughter was 1st dx'd(?) with autism, I went to a lot of seminars and conferences and something that was frequently pointed out was that there seemed to be a disproportionate number of Rh negative women who mothered autistic children. I don't think an actual link was ever established. But Rhogam works by preventing moms from developing IgG against RhD antigens....so I wonder if that could have an effect on the immune system of the infant. Also wondered how many of our PANDAS kids had neonatal high bilirubin levels. So, how many of you moms are Rh-, and how many had babies w/ high bilirubin?

I think since it was only a 5 day course tapering off was not considered necessary. Of course, we should have known nothing is ever typical for this kid. She is sleeping...kind of-very restless and I'm so afraid she's going to get up for the whole night. I'll try calling the doctor tomorrow if she still seems to be having a lot of trouble in the morning. Do you ever feel like you are just a pain in the tookus when you're constantly calling/seeing the doctor?

Thank you all for your advice and shared experiences. Her 5th and final dose of pred. was Saturday morning. Sunday really really sucked. Don't know if it was pred w/drawal or what. She had 10-15 breakdowns...smashing her face with her knee, serious head banging...even the return of some OCD issues. A couple of times it looked like she was having some leg cramps- toes curled under and legs kinda rigid and bent at the knee.

My PANDAS daughter has been declared a "carrier" by an ENT, an immunologist, and a rheumatologist. They seem to imply that we do not need to get rid of the strep because it is benign.

Good luck getting the IVIG!vCould they try a longer course of prednisone? I hope so.

Is anybody else thinking that prophylactic doses do nothing? I mean, isn't the idea that they should prevent an infection from occurring? I understand they are not strong enough to eradicate an established infection, but it sounds like in many cases they are not strong enough to prevent infection either.

I'd give it a few hours after each abx dose. Abx kills bacteria-good and bad, so I'd want to keep replenishing the good.

The school can give probiotics for you if they have a doctor's order. Then in the evening you could give the probiotics a few hours after the antibiotics.

Its a let's see if we can figure out what's going on and stop making antibodies to the strep and see if it changes behaviors...we'll talk more about IVIG when we go for the follow up appt. Her dr. has wanted to try IVIG for her for a long time, but can't get support from specialists to nail down an insurance acceptable reason go for it.

I don't know much about Kefir, but my guess would be that if there is any killing being done its the other way round-the antibiotic killing good bacteria in the kefir. Not sure if anything kills antibiotics.

To keep her from getting yeasty from antibiotic use. Her pediatrician prescribes for the above reason. We have bought Kirkman's Yeast Free in the past when we didn't have prescription antifungals. Can't say how well it worked because we didn't give it consistently enough or as many times a day as recommended. But I generally like Kirkman's products. We also get the S. Boulardii from Kirkman's- a gut friendly yeast that is supposed to help not only against candida yeast, but also against clostridia gut bacteria. I see behavior improvements (mostly mood) when she's on that so keep getting more when we run out. I think they are pretty safe. But you always have the potential of upsetting the microbial flora balance in your intestines. My daughter's pediatrician always recommends yogurt or probiotics when he prescribes antibiotics. But when the strep came back after her tonsillectomy, along with a pretty nasty vag. yeast infection, he started her on both abx and diflucan (a high dose) right away and kept her on a maintenance dose after that. We switched from a weekly dose of diflucan to multiple daily doses of nystatin when I observed behavior increases on the diflucan dosing day. Yes, obviously her vag. yeast infection cleared up. We used to have a bit of confusion over what was streppy behavior and what was yeasty behavior. Helps to get that sorted out.

If the probiotic is bacterial the antibiotic will kill it. But if your probiotic is boulardii (a gut friendly yeast) antibiotics will not kill it. I think you're supposed to wait a couple of hours after antibiotic to give the bacterial probiotic. If your child is on an antifungal (nystatin,diflucan) then you have to give the boulardii a few hours after because that will destroy the boulardii.

Was trying (but not succeeding) to understand the basal ganglia on wikipedia and came across this. http://www.ibags.info/ They have a very short tutorial, but there is a convention next summer in California. I was just thinking it would be good to have PANDAS represented there.

But, are the strep antibodies actually attacking/destroying brain cells? Or are they stimulating them, causing them to transmit erroneous impulses? Here's the thing: If you look at other autoimmune diseases like type1 diabetes- the insulin producing cells are actually being killed, so that they are gone. But I think the molecular mimicry thing means that the antibodies are causing the basal ganglia cells to perform abnormally, but not attacking/killing them.

We only did 5 days, but all three of those things decreased. Today is the last day....I'm scared.

Yes, thanks for sharing. So nice to get a simple, clear, easy to understand explanation. I don't feel like I have to run off to pubmed, pouring over abstracts till my eyes cross in order to get the full impact of what that means.

Oh, my goodness. Prayers going up for you guys!