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otksmama

What if abx don't work?

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My son was on a ten day course of augmentin and biaxin, per dr t, then dr k extended the augmentin four more days. I would say he largely did not improve. What does this mean? He's been in this flare since he was sick in march. I would say he doesn't have sx of chronic infection. Why is he stil in this flare? Does he not have Pandas if he doesn't respond to abx?

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My son didn't improve until he'd been on Augmentin for 5 months and had been through a lengthy steroid taper, as well. Even then, it was months after the taper that he finally improved. Do they want to try steroids or consider continuing the antibiotics?

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Fourteen days of abx is barely enough time to see small improvements. After nearly four years of this, the one thing that keeps my son doing well is daily treatment dose abx. When it wasn't working as well earlier this year, we did additional testing, found tick born infections and now he's on two antibiotics and doing well. He had a flare after losing a baby tooth molar. Took 10 days of clindamycin, along with the other two antibiotics and he's back to doing well again.

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What number episode is this? I noticed by the fourth episode, my ds no longer showed great improvements. The research suggest this as well. According to Dr. K., when my son no longer responded well to abx it was time for IVIG. What did Dr. K. say about this? Also, how long was he sick with the last infection that tripped off recent episode? My son had tonsillitis for 6 weeks, and it took months to come out of that episode. I think it was because his brain took the hit for a long time, and that is why the episode lasted so long.

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Qannie...interesting. I don't know what number episode this would be. It's his first big, obvious, debilitating one. But looking back, I'm certain he had his first at 20 months and has had a few since. None which were ever treated. He was sick 6-7 days in march, again no treatment. Flaring ever since. I asked dr k what it means if he didn't respond to abx. He just said we'd need to consider ivig. We are day 7 today post steroid burst. I'm so anxious about everything that I sent my first week of observations to him today and he just said I want TWO weeks. Haha :)

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So it sounds like this episode was the qualifying episode. The BIG one that gets everyone's attention...Typical. So, I would consider this episode 1. What was he sick with? My ds, with his first episode, (the BIG one that got our attention) tested positive for Strep for 6 weeks straight after we figured it out. He remained on antibiotics the entire time, (with the exception of off a few days so we could test). It took that many weeks of antibiotics to clear out the strep...Hence....when we finally accomplished that, ALL THE SYMPTOMS WENT AWAY PRETTY MUCH OVER NIGHT. He was then completely normal for about four months. After that, any form of Illness set him off. I noticed the more severe the illness, and how long he was sick, the longer the episode. With each concurrent episode though, the abx failed to work. I don't want to play doc, but if I had it to do all over again, I would have RUSHED to IVIG. The newest study is testing the idea of how much more effective Ivig is if done after first episode, and before another one takes place. Ivig is considered safe. No long term repercussions result from it. In my opinion, you have nothing to lose, and everything to gain...How is he doing now? Don't wait for another episode even if he gets better with burst.............

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Qannie

What worries me most is the long term abx required after ivig. As dr k said, flares can be induced by anything, as in other autoimmune conditions. So even though an abx might prevent strep flares post ivig, what happens with the first major viral illness he has? Plus what about the disruption of gut environment for that long? Ivig is definitely not out on the list of options though for us.

It sounds like so far so good for you. Have you heard other success stories--kids getting one ivig, being on abx for a year or two, and that's it? Dr k makes it sound like most cases are actually that way. What do you think? You've referenced many reports on it...would you mind sending those links to me? Thx! :)

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If you don't do antibiotics after IVIG your chances of needing a repeat IVIG and chronic PANDAS are MUCH higher. Antibiotics won't 100% prevent every flare (esp viral), but they do help a lot. Antibiotics also have other properties (immune modulating etc) which can be very helpful for PANDAS kids.

 

Here is a recent article by Dr. Murphy "Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders"

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/

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We had to move past antibiotics to IVIG and immuno-suppresants (Cellcept) to turn a long slow corner towards improvement. Apparently, DD 15 was/is still producing antibodies long past the infection phase.

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Otksma, just met with Dr. K. First, he said that after IVIG, it would be unusual for other illnesses to trip of Pandas in a major way, although, to be safe, he would still use higher dose of abx when he got sick with anything signifigant. Two, he does not actually feel that abx is enough to prevent strep, and if he gets it and if we are not vigilent, it could indeed trip off a bigger Pandas episode....so the trick is to catch it asap. Third, the idea of abx is used not only to ward off infections, but abx also is an anti-inflammatory as well so it could be considered a part of the healing process. Three, gut issues...my ds takes a probiotic daily and will continue, so I am not worried about gut issues (not at the same time of day as abx). Remember, the bigger picture of the IVIG is to MATURE up a glitch immune system...that takes time, hence the 1 to 2 years of antibiotics and vigilance for future infections...Fourth, these days I am happy if I remember to close the cabinet doors in my kitchen, but I will try and remember and reference some material for you...The collaborative study that I talked about was from the NIMH website. Go there, it is a study done on I believe 50 kids who were treated within the first year of 1st episode with IVIG and tonsillectomy...I am getting my ds's yanked out in December....he can eat all the ice cream he wants...

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Just to clarify, Dr. K. is wrong. There have been many many cases of other things tripping PANDAS in a major way. My dd is one of them. She had HD IVIg a number of times. Was doing great 95%+. Developed a MASSIVE complex motor tic that was debilitating for 2.5 months. Finally swabbed her nose and found MRSA. Culture found it was resistant to everything (had tried most abx, antivirals, IV steroids, oral steroids, IV abx, IVIg, Cellcept ongoing, etc.) except for BACTRIM. After 7 days dd has stopped ticking completely and can go back to school. She was housebound again from this trigger and no, it was not strep.

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