peglem

Okay, I've enjoyed about all Holland has to offer and I'm ready to get the h3ll out of here! And the war in Holland is not much fun, either, especially when you're a POW! And I want my money back from the stupid airline w/ the drunk pilot that flew me here! I've had some thrills in Holland, sure, but I want to go home!

Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen.

Does he mean last resort, as in, "we'll only use it if we really have to and nothing else is working" or "you're at that point where IVIG is the only thing that can possibly help?"

How is he symptoms-wise? If symptoms are improving, I wouldn't worry too much about the titers. But, then, we've never really had high titers. The only thing I wonder is if your child may have intracellular strep. I don't think much is known about the rate at which titers fall, and I think you need to look at whether the titer is rising or falling over time, more than making a judgement based on a single value.

Y'know, what we've worried about most is that, because she beats herself up pretty badly and has lots of bruises all the time, is that we'd be investigated for child abuse. Never occurred to me that it would come from seeking medical care. We have not been actually reported and investigated- but only because our pediatrician is a man of reason and humility. I pray for our families daily, but also for their physicians!

Okay, so what's the deal when the site loads, but there is no "sign in" at the bottom and no "vote" button? I've got a lot of proxies to cast and wanted to do it before the young 'un gets home from school.

I believe IgE may be elevated for parasites.

I have a 15you daughter who has been dealing with this from infancy...we've been considering PANDAS for the last 5 years, but only have really pursued aggressive treatment for the last 9 months-since getting the Cunningham results. She tested positive for strep last September, despite being on a prophylactic (but not full strength) dose of zith. So we spent sept/october trying a lot of different antibiotics-judging effectiveness by behavioral improvement. The last week of Sept. we did a 5 day steroid burst, which helped, but then she got ill with something and had dental work done. Then things really got crazy! Finally, around the beginning of December we did 10 days of rifampin/augmentin combo. That really turned the tide for us-once the yeasties cleared. We followed that up w/ full strength zith prophylaxis. We had 3 terrific months- I don't have a baseline to gauge % improvement, but you know what a blessing it is to have the rage attacks gone! So that three months is now our baseline. At the end of March we did our 1st low dose IVIG-she got a little worse. 3 weeks later we did another low dose- she got really bad again. Last week we did the high dose IVIG and she's beginning to improve. We're trying another round of the rifampin/augmentin combo that did such great things in December, hoping for the same result, and we will do another high dose IVIG in 4 weeks. Augmentin is not a great drug for my daughter- it really amps up her vag. yeast- we're going to hit it hard w/ diflucan this time.

Its true that our kids don't LOOK sick...and anyway mental illness is not taken seriously in this country by people who have never had a close relative suffering from it. find myself not explaining PANDAS, or even using that word. I just say she has an autoimmune disease, triggered by strep that causes neuro problems. I guess, I'm fortunate(?) that there is obviously something wrong with my child- but, still most are content to call it autism, not a medical condition. For me, doctors are the worst about accepting the autoimmune condition. Most of them are so sure that there is no cause for autism.

Your post just oozes with infectious joy! I'm so happy to hear this!

Hi, Stephanie, Actually, per the spiro,it's kind of hard to say. He has reached a clinical dose of Intuniv, complete with negative side effects, and there may be some residual help there. There may also be some relief from the spiro. I want to run it a month and see what happens. We are trying to keep up with his abx as well, he's been getting Clindamycin again. Lots of sore joints, nasal congestion (allergies AND trouble from the Intuniv), does have explosions but bounces back nicely which is good to see. He wouldn't take the spiro this AM, said it tasted funny. He does this a lot, his SID rages on. Hope your older boy is feeling better. Michael Just a thought...it seems to me like inflammation would worsen chiari symptoms, wouldn't it? I mean, it seems to me that it would crowd the cerebellar tonsils even more than they already are.

So.....Tacoma Swim Club?

We have never tested mycoP levels, but I know that myco P is an intracellular infection. When we suspected that my daughter's strep was intra-cellular, we treated with a rifampin/augmenten combo w/ dramatic results- the best my daughter has ever been since I can remember. We did 10 days of this treatment, followed w/ 500mg zith every other day. We got 3 months of wonderful remission out of this, until we did low dose IVIG 2X. We're trying this same treatment again this week-probably starting tomorrow, to see if we can get her back in that good place. Her liver needs to be in good shape, but we checked that and it is.

Thanks for the laugh! Y'know, that money is not even really going towards anything that will save lemurs- they want to modify part of their zoo-they're exploiting the poor lemurs! Unless of course they get to live like that little fella in the picture!

I just have to ask...how are your son's PANDAS symptoms while he has a fever? My daughter seldom got a fever, but when she did...it was like a vacation from PANDAS! I do hope you son gets feeling better gut bugs are not nice!

So, just 4 days out. I gave lots of ibuprofen over the weekend and some valium or valerian when she really needed. This AM she was pretty ragey- but communicative, too. We usually do not get both. Very difficult getting her to school. But, after the 1st hour or so of school (according to teacher), she had a fantastic rest of the day. Lots of laughs and fun! This is her last week of the regular school year, so its a more relaxed week. But, I picked her up after school to take her to the doc. and she did great! She's been terrific all this afternoon and evening, w/o ibuprofen or anything! She's been a bit mommy-clingy, but no rages! I hope she's really turned the corner here and not just the tip of a sawtooth!

Had an appointment today...he wanted to document improvements we've seen, he said to show medical validation for the treatments she is getting, in case he or we are accused of just experimenting or munchausen's or something of that nature. My hub asked him if there have been accusations... He said, "Let's just say that I've had to go to bat for Peggy (me) a few times. But, I explained to them what was going on and don't worry, those doctors are no longer involved in her care." Huh? All I did was seek care for my child. I'm a little taken aback by this...but so glad we have this doctor helping us. Do I need to be careful? Not sure how to navigate that! I've also been concerned that my daughter will have to find a new doctor when she turns 18 (2&1/2 years). He said he'll see if he can follow her until age 21. He's done this with some of his special needs patients, and he really wants to see how this all plays out. Such a load off my mind- bought another 3 years! We're going to try the rifampin/augmenten combo again to see if we can get her back to pre low dose IVIG. Somebody get this man a halo! .

Okay, sorry I got all crazy! And thanks for checking it out and setting me straight! But, I'm not seeing any comments from wms for us today, either.

This is a middle school- what kind of values are they teaching these kids- to give your word and then betray it? Would it be wrong to leave a comment on WMS's refresh page? I stayed up late last night to give them 90 votes because I had a busy day today and wasn't sure I'd get a chance later on.

I feel double crossed by wms. LOTS of votes going from them to a 50K competitor-Karen Price for Maharishi Upper School, they are at 22!

I'm sorry, I do forget sometimes how different my daughter's situation is from others. She attends a self contained, cross categorical special needs school. In the mornings, she keep refusing to get on the bus- and they would have to leave w/o her, and so I cancelled the bus and now I drive her. Its very difficult to get her into my van in the mornings. We cannot physically force her anymore. It takes a lot of reassurance. She frequently thrashes about in the back seat while we are driving to school. Refuses to get out of the van when we arrive....its quite an ordeal! But, she has a one-one assisstant and the school is designed to thwart escape (for lack of a better word- its not safe to have kids running off!) Once she's actually in school, she seems to enjoy herself.

Does he tell you why? Could it be separation anxiety? After my daughter's 2nd low dose IVIG, she started the same thing. I think at that point it was definitely separation anxiety. We're still struggling with it. We make her go anyway, because (God forgive me) I need a friggin break! My daughter goes to a special needs school, though, so has people at her school that can deal with severe behaviors.

Do you have a link to that paper? My daughter's psychiatrist is interested in PANDAS in a let's-see-how-this-all-turns-out kind of way and I think that study would be something she'd like to see. Not that anybody can get a ybocs score on my kid, but she does have other patients.

Thanks for your reply. As always you have great answers!

This one: Do they know what it is in the serum that is interfering w/ the bonding? I mean, how do they know its from strep and not something else? And wasn't there a correlation between kids on SSRIs having high antiD2? Could the SSRIs be interfering with the dopamine receptor, instead of an antibody? I hope I'm asking that right.