lismom Posted October 18, 2009 Report Posted October 18, 2009 My sons primary issue is tics with some emotional outbursts. He is believed to have had rheumatic fever last spring and had to finish school at home. We were on zithromax for over 2 months and saw recovery, not 100% but close. Something happened over the summer and had a relapse. I figured that the zith wasn't working, stopped and was going to try steroids but got scared and backed out. We ended back on zith and I upped the dose some to 600mg every other day to try and help avoid stomach issues. We have been on this for over 2 months again and the recovery has been only about 60% better this time. I don't know whether to be patient and like sammy's case it took time to recover or should I switch to high dose augmentin which seems to be working for some. This is so difficult. I can't get ivig right now because of cost, my insurance won't even cover the monthly zithromax. Thanks for any imput, Kathy
peglem Posted October 18, 2009 Report Posted October 18, 2009 It varies so much from child to child. The best antibiotic is the one that works for your child. If the zith isn't cutting it...why not give something else a try?
Betty04 Posted October 18, 2009 Report Posted October 18, 2009 Just thought I would add my latest experience. My son had been on daily Azithromycin which initially helped. Then after being on it for a couple of weeks his tics significantly worsened. We were transitioning across country at the time so I assumed it was the stress of moving. Now I am not so sure? This September, he was on 500mg weekly Azith when strep was in his class. His tics worsened, we upped the dose to daily 250mg and it really did not help. After 2 weeks on Augmentin 500mg daily (he is only 40lbs), he is significantly better. It was a bit of a saw tooth recovery though because he got a virus right after starting the Augmentin and then a bad cold on day 9. However he has maintained his improvement despite illness so we are keeping him on daily Augmentin while we figure out the next step. Hope that helps give you some hope that maybe Augmentin would be helpful for you. However I do agree with others that it can take time and with all the illness out there it is very hard, if not impossible, to know whats what!
lismom Posted October 18, 2009 Author Report Posted October 18, 2009 My son weighs 95lbs, he is 12. Just like using high doses of Augmentin, I am wondering wether I should up his Zith to 750mg every other day. Right now the every other day has been working for stomach issues. He did have some diarrhea the last go around on antibiotics.
EAMom Posted October 18, 2009 Report Posted October 18, 2009 Our 54 pounder is on 250mg/day Azith. long term (she started that dose when she was 43 pounds). So, IMO your son (95 pounds) should be on 500mg/day (or 1000mg every other day). BTW, we did notice a difference when we went down to 125mg/day (equiv. to 250mg every other day). It's hard to say whether Azith. or Augmentin is better...it probably depends on the child and perhaps the strain of strep. However, it's not really fair to use a low dose of Azith. and say it's not working, and say Augmentin is better (b/c you've used a really high dose). Azith. is the only ab that has been shown to be immune-modulating/anti-inflammatory. (It's possible that other antibiotics are as well...but nothing has been published.) IMO, if you are going to use Augmentin (or Azith. for that matter), you should hit it hard with a really good dose.
lismom Posted October 18, 2009 Author Report Posted October 18, 2009 Our 54 pounder is on 250mg/day Azith. long term (she started that dose when she was 43 pounds). So, IMO your son (95 pounds) should be on 500mg/day (or 1000mg every other day). BTW, we did notice a difference when we went down to 125mg/day (equiv. to 250mg every other day). It's hard to say whether Azith. or Augmentin is better...it probably depends on the child and perhaps the strain of strep. However, it's not really fair to use a low dose of Azith. and say it's not working, and say Augmentin is better (b/c you've used a really high dose). Azith. is the only ab that has been shown to be immune-modulating/anti-inflammatory. (It's possible that other antibiotics are as well...but nothing has been published.) IMO, if you are going to use Augmentin (or Azith. for that matter), you should hit it hard with a really good dose. Thanks, I think I will bump up the zith. I got so concerned because my pediatrician kept talking about liver function. But I happened to give him ibuprofen last night for a headache and I swear he seemed a little better.
Buster Posted October 19, 2009 Report Posted October 19, 2009 We also saw an improvement when adding advil into the mix. We can't say why but ibuprofen was quite effective and we've kept it in the daily regimen. 100mg/day. We've tracked long-term azith usage in cystic fibrosis -- it's about the only studied long-term antibiotic. ARF tend to use penicillin rather than long-term augmentin. We checked with both rheumatologist and immunologist and both were comfortable with dosage with recommendation to consider narrower band antibiotic in the future when other variable are all stable. Regards, Buster Our 54 pounder is on 250mg/day Azith. long term (she started that dose when she was 43 pounds). So, IMO your son (95 pounds) should be on 500mg/day (or 1000mg every other day). BTW, we did notice a difference when we went down to 125mg/day (equiv. to 250mg every other day). It's hard to say whether Azith. or Augmentin is better...it probably depends on the child and perhaps the strain of strep. However, it's not really fair to use a low dose of Azith. and say it's not working, and say Augmentin is better (b/c you've used a really high dose). Azith. is the only ab that has been shown to be immune-modulating/anti-inflammatory. (It's possible that other antibiotics are as well...but nothing has been published.) IMO, if you are going to use Augmentin (or Azith. for that matter), you should hit it hard with a really good dose. Thanks, I think I will bump up the zith. I got so concerned because my pediatrician kept talking about liver function. But I happened to give him ibuprofen last night for a headache and I swear he seemed a little better.
EAMom Posted October 19, 2009 Report Posted October 19, 2009 Actually we give 200mg/day of advil. This is the long term dose the immunologist thought would be very safe. Short term, we (54 pounds) could give 200mg 3-4x daily. A bigger kid could of course, take more. Give it with food.
matis_mom Posted October 19, 2009 Report Posted October 19, 2009 Hi, This is my first time posting. My 12-yo has been on antibiotics for three months... His problems started (or we started noticing more) last feb. after we all had a pretty bad flu. He started having stomach issues, OCD, fatigue, swollen joints. We kept going back to the pediatrician saying, "he's just not right." Thank God, through some friends of friends we found a Dr. who diagnosed him right on the first visit (extensive labs proved he has strep in his gut) We started of with Amoxicillin, then he had his tonsils out and they put him on Cipro for 10 days, then back on Amoxicillin, now they have switched to Cefuroxime plus Hydroxychloroquine... We are going back to the dr. this thursday, I am going to ask if they can do another stool test, and then run a panel to see in vitro which antibiotic works. I know this can be done, they do it routinely in other countries, I don't know why here they keep trying them right on the child, especially with all the damage long term use causes... My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far. So, my question is, or rather my questions are: 1) How long does it take before one can say "THIS IS NOT WORKING" 2) Can anyone who has seen this through tell me how long it took on antibiotics? 3) Has anyone had their doctor test in vitro to find the right antibiotic? Another question I have is about Ibuprofen. I read in PANDASNETWORK it seems to help. I guess it just brings the swelling down? I can tell when my ds is having a bad day, even his eyelids look puffy, I don't even want to know what's going on in his brain... We are seeing our regular Dr. on Thursday, and then we are seeing a neurologist, Dr. Latimer, on Friday. Dr. had recommended we see a psychiatrist for some anti-anxiety meds to help him through this rough patch, so we figured we should better get a second opinion before we go that route... Thanks for all the info and please reply with any answers, tips, suggestions, encouragement?
EAMom Posted October 19, 2009 Report Posted October 19, 2009 hi mati's mom...can you re-post as a new (separate) topic so more people will see your post? Thanks!
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