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Posted

My dd's gut is a train wreck. She has had a weak gut to begin with (food intolerences, yeast overgrowth) BEFORE we started all the antibiotics. Different daily antibiotics, steroids, me laxing on yeast feeding type food- it's a mess.

I want to go to Azithromycin 1x a week. She currently weighs 38 pounds. Dr. is leaving it kind of open, sort of, he is suggesting 200. mg (my capsule sizes) 1x a week! Seems really low to try and prevent a new infection...

Maybe 400 mg a week?

Has anyone tried this approach to protect from outside strep? I ask for strep notices from her school, but, can't rely on that.

Thank you for any thoughts.

Posted

My dd's gut is a train wreck. She has had a weak gut to begin with (food intolerences, yeast overgrowth) BEFORE we started all the antibiotics. Different daily antibiotics, steroids, me laxing on yeast feeding type food- it's a mess.

I want to go to Azithromycin 1x a week. She currently weighs 38 pounds. Dr. is leaving it kind of open, sort of, he is suggesting 200. mg (my capsule sizes) 1x a week! Seems really low to try and prevent a new infection...

Maybe 400 mg a week?

Has anyone tried this approach to protect from outside strep? I ask for strep notices from her school, but, can't rely on that.

Thank you for any thoughts.

My daughter was for @ a year on a 5days on/7days off zith prophilaxis. She got strep!

Posted

We don't have experience with this protocol yet, but I just took my ds to a pediatric neurologist who treats PANDAS and her recommended treatment plan includes one 250 mg tablet of azith per week as the prophylactic dose of abx. My ds weighs about 68 lbs. I am too new to this to know if that is not enough, enough, or what, but I thought I would let you know what she recommended to us. We are coming off of a strep infection so we are doing a 10-day course right now. (He was not on anything when he contracted strep because we did not have his PANDAS diagnosis yet.) She also recommended that with a known strep exposure (not infection) we do a 5-day course, and then go back to the prophylactic dose. When he tested positive for strep his pediatrician put him on 200 mg of azith, so she was using even less than the neurologist recommended.

Posted

my understanding is that while you may not need to give zith every day (we do 3 days per week)- one day per week isn't enough. its long acting, to be sure, so technically 3 days/week is the same as a full week of coverage (or the box says 10 days although i don't quite believe that for our kids).

because my son has gut issues, every now and then i keep him off for a week or so and give him olive leaf extract which has strong properties against strep.

also, don't hesitate to do a strong GI rebuilding program, even while on zithro, just to do the best you can and prevent further damage to the lining there.

Posted

Thank you for the replies :-)

 

Well, I'm a chicken. We have 200 mg capsules, which I had been giving daily, for 11 weeks, with a few trials of other antibiotics in between. I've decided going to change it to 200 mg.

1 capsule Sunday night

1 capsule Wed. morning

1 capsule Friday night

That is 600 mg a week for a 38-40 pound girl.

I think I read somewhere that Azith. has a 68 hour life/1/2 life, however you put it.

I have a really honest DAN!/PANDAS Dr. who says: It is hard to tell. What the medical recommendation is, and what a PANDAS kid needs, are 2 different things.

I certainly don't want an infection after HD-IVIG.

Anyway, that's my plan.

 

Thanks again---

Posted

Keep in mind that PANDAS kids don't seem to have a good immune system against strep.

 

My dd gets (currently 64 pounds) Azith. 250mg/day. When we tried to lower it to 125mg/day (even after she was on it for a year +), we noticed a ramp in symptoms. There is probably something more than just prophylaxis going on (immune modulation? strep lurking still in her body?) but I would be nervous about these low once weekly doses (200 or even 500mg)that some of these docs are recommending.

Posted

Yes, I do wonder about the strep still lurking (in the gut or vaginal/peri anal area, as my Doc said it can hide out) guess I need to do the stool test just to see...but the daily Azith. was fantastic for the first 4 weeks- then PANDAS just went out of sight again-hence, we tried Augmentin, which caused her to stop eating almost entirely it was so hard on her tummy- we had already tried Omnicef, steroid burst, which is why I ended up going to HD-IVIG- I believe the auto-immune process was just to far gone. I believe this has gone untreated in her for a long, long time.

 

Currently, we just started Flagyl and Keto. to try and get her gut back (and good probiotics, which I've given throughout.)

My dd really does have a weak/bad gut, and it can over-shadow everything :-( She recently lost 3 pounds/stopped eating it got so bad recently.

Trying to get it back in line- these new prescrips. have already got her back to eating (rough though- I have to hand feed the good food/protein, and we have die off of the nasty gut stuff.)

I'm talking a long time here, lol. Sorry.

Posted

Yes, I do wonder about the strep still lurking (in the gut or vaginal/peri anal area, as my Doc said it can hide out) guess I need to do the stool test just to see...but the daily Azith. was fantastic for the first 4 weeks- then PANDAS just went out of sight again-hence, we tried Augmentin, which caused her to stop eating almost entirely it was so hard on her tummy- we had already tried Omnicef, steroid burst, which is why I ended up going to HD-IVIG- I believe the auto-immune process was just to far gone. I believe this has gone untreated in her for a long, long time.

 

Currently, we just started Flagyl and Keto. to try and get her gut back (and good probiotics, which I've given throughout.)

My dd really does have a weak/bad gut, and it can over-shadow everything :-( She recently lost 3 pounds/stopped eating it got so bad recently.

Trying to get it back in line- these new prescrips. have already got her back to eating (rough though- I have to hand feed the good food/protein, and we have die off of the nasty gut stuff.)

I'm talking a long time here, lol. Sorry.

 

Yeah...I think Augmentin is harder on the tummy than Azith. Also, my dd's ped thought Augmentin was more likely to cause yeast problems then Azith.

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