peglem

But, remember the mouse model- just the antibody were injected into healthy mice, and the PANDAS behaviors were the result.

Allie gets infusions every 21 days as well. Her blood draws are done immediately before an infusion.

MycoP IgG is one that is specifically included in the IVIG, at protective levels. That being said, in October Allie tested positive, not just for IgG, but she was also IgM positive. So, while the IgG may have been a reflection of donor antibodies, the IgM was certainly hers. Allie's neurologist at the time ran a whole bunch of IgG testing, but the only pathogens she was IgG positive for were the ones that are specifically included in the serum (she gets Privigen brand). I asked, when she was making out the lab slip, if the results would be skewed by the IVIG, and she yes, but she would still be able to tell. I guess if the clinical picture jibes w/ the labs? Although, Allie had no MycoP symptoms, except the neuro stuff. IDK, if you think mycoP is a possibility, maybe you should treat for it just in case- risk vs benefit, right?

I'm tired of being a trailblazer. I want to try what has worked for others and have it work for my kid. Just seems kind of unfair. Her pediatrician tells me that she is the patient that made him the kind of doctor he is today and if it wasn't for her, he'd just be a mediocre doctor. I can see how someone like my daughter could force one to examine his own values as a physician, and I'm glad he has learned so much from treating her and has been able to use that to help many other kids. But here we still are, experimenting, more or less, to help her.

From what I've read, its impossible to rule out lyme. I've got a neg testing as far as CDC. She did test both IgG and IgM positive for mycoP in October. But, tough to get tested for lyme in AZ because it supposedly does not exist here. (I know 2 families who did test pos. though). Anyway, we have no more money- hub is at the end of unemployment. If its not covered by Allie's insurance, we don't do it. I do wonder what might be hiding out- she's kinda cysty- MRI of hands and wrists showed a small cyst on each side. CT of sinuses showed a small cyst in sinuses. Abdominal ultrasound showed an ovarian cyst. Docs do not seem to think these cysts are important, so I gather it must be pretty common. I'll ask her neurologist next time we go in, but that's not until early Feb. She's the one that ordered the CDC lyme tests.

Thank you. That does sound hopeful.

No, not for arthritis. We were doing steroids @ every 6 weeks, but she was flaring more than that, so the metho was rx'd as a steroid sparing treatment. Its used in other autoimmune diseases, like MS as well. Thanks for your reply- did it make things worse for your hub, or just not better?

We have the go ahead from the rheumatologist to try methotrexate and I have the rx filled and sitting in the cabinet. Will probably start either Sunday night or Monday morning. I wanted to wait for vacation so I can watch carefully for a reaction. Then I decided to wait until after Christmas, so possible side effects wouldn't spoil her holiday. Probably, it will be fine...but I don't know anybody else who has done this. It sucks being the trailblazer here. It seems like we've tried everything else, but just can't keep her from flaring and she flares from just exposure. It makes complete logical sense to suppress her own immune system and she's well supported w/ donor IgG and abx. I know why I'm scared, which doesn't exactly make sense- Allie's cousin who is just a year younger than her died of cancer a little over a year ago. He had been on Methotrexate as a chemo agent (but at much higher dose and IV). But there it is- I'm associating the drug with that horror. I hope somebody can tell me that they have tried metho, and it was just the ticket they needed!

My daughter gets 1.5g/kg every 3 weeks. We can tell when she's due for another one. It does seem to help her get sick less, but has not ended flares. Monday after Christmas we will be trying low dose methotrexate to decrease her own immune response to infection. I think if you're not getting good immune system control with what you're doing now, it's worth a try. You don't have to continue any treatment that is not working.

Is there anyway you could switch to an abx that is only dosed daily? Macrolides, maybe?

Zith has an approximate half life of 68 hours, which is precisely why it is used so frequently for PANDAS. But, it does not stay in the body indefinitely. That being said, I have heard of a few cases of reactions to it- toxicity or not, IDK- there was one person on here whose child developed hearing problems, and just recently I've heard of 2 others on another site whose children got a weird, peeling rash on their fingertips that may have been caused by zith- they are waiting to see if it resolves off the zith. As with all medications/supplements you have to consider risk vs benefit...

Thanks!

A very long time ago somebody posted the name of a lab company where you could get tests run w/o a doctor order and pay out of pocket. Anybody remember?

My daughter tested positive for antithyroid antibodies and has been treated successfully w/ levothyroxine. It has helped her a lot- especially w/ hand cramping. She was having such horrible hand cramps that she'd wake in the middle of the night screaming, with her hands all stiffened in a weird posture. She could not use her hands for anything. That resolved w/ thyroid medicine.

You have to weigh the risk of him getting hepB vs the risk of him getting a reaction to the vaccine. I believe you'll find that reactions to the vaccine are pretty common (including autoimmune reactions) and the chances of getting hepB from ivig are pretty slim. But, take my opinion with a grain of salt as I believe the HepB vaccine the day my daughter was born is what set her up for all the problems she's had w/ her immune and neurological systems...so, I'm a bit biased.

My PANDAS child did pretty well on lamictal. But her older sister, who I suspect has mycoP induced PANS, had a terrible experience w/ it and it was immediate w/ the lowest, introductory dose. It slowed her brain processes to where she could not initiate speech in time to have meaningful communication.

We found this therapeutic play kit very, very helpful. My daughter IVIG'd every stuffed toy in the house. It helped to diminish her fear. http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html

Yes, but, really it would have taken about 5 seconds of air time to explain that IVIG is giving antibodies from donors to the patient.

Well, Allie's stomach flu lasted @ 24 hours. And since getting over it, she's not having headaches anymore. Hmmm. She took no medicine, except thyroid med because I was afraid it would make her throw up again. So she was off abx and propranolol for 2 days. She seems to be feeling better than she has in a LONG time.

I didn't read the whole article, but what I think that statement is saying is that the antibodies are circulated throughout the body, looking for antigen to attach to. If there is plenty of the proper antigen available throughout the body-they'll attach to that, but if the target antigen is not available they'll attach to something that's close enough- so, if they can't find their ideal mate (cause he's half way across the world) they'll find a mate that's good enough, and if the second choice mate is self-tissue, then you get autoimmune activity.

Well w/ the 4 other people who've had it so far, the vomiting and diarrhea have only lasted about 24 hours, and, frankly, a little Allie fatigue would be a nice little vacation for me! Allie communicates pretty well with people who know her. I've become pretty accepting of her not speaking. Its been about 10 years.

The household is going through the stomach flu. Allie just got it-not me so far, but every other day another one bites the dust, so probably my turn next. Anyway, Allie is actually running a fever...sort of. She gets very feverish, then throws up and the fever completely subsides. Then she heats up again-cycle continues. Is that normal with stomach flu? She so seldom gets an actual immune reaction, I don't know.

Bumping. Show is tonight!

House Calls with Dr. Trifiletti and Marcel Cairo will have Dr. Cunningham on this Wed, 8PM(EST), 7PM(CST), 5PM(PST) www.radiopandas.com

So, he's already on 500mg/day of zith and they rxd a z-pack? My daughter generally does better w/ illness when she has a fever, not that that happens often. But its when the fever subsides that the crap starts to fly!