rifampin

[peglem]

So talked to the pediatrician today about getting more aggressive with trying to clear Allie's strep carriage. He's planning on 10 days of rifampin + Keflex... Anyone have experience with this?

[Kayanne]

3 out of 4 of my kids were piggybacked with Rifampin on days 7-10 of a 10 day course with other antibiotics. It cleared two of my kids. It took a fouth course of antibiotics (Clindamycin 300mg 3/x day for 10 days) to clear my PANDAS daughter.

[melanie]

3 out of 4 of my kids were piggybacked with Rifampin on days 7-10 of a 10 day course with other antibiotics. It cleared two of my kids. It took a fouth course of antibiotics (Clindamycin 300mg 3/x day for 10 days) to clear my PANDAS daughter.

how much does your cho;d weigh

[peglem]

3 out of 4 of my kids were piggybacked with Rifampin on days 7-10 of a 10 day course with other antibiotics. It cleared two of my kids. It took a fouth course of antibiotics (Clindamycin 300mg 3/x day for 10 days) to clear my PANDAS daughter.

how much does your cho;d weigh

Allie (is that who you're asking about?) just crossed the 100 lbs threshold.

[Kayanne]

3 out of 4 of my kids were piggybacked with Rifampin on days 7-10 of a 10 day course with other antibiotics. It cleared two of my kids. It took a fouth course of antibiotics (Clindamycin 300mg 3/x day for 10 days) to clear my PANDAS daughter.

how much does your cho;d weigh

 

If you were asking about my daughter, she was about 42-44lbs and six yrs old when she took the Clindamycin in May this year. This is a high-end adult dose.

 

DO NOT use the liquid Clindamycin if your child cannot swollow pills. Have the pharmacist make caspsles that you can open. We added the powder to chocolate pudding.

[Worried_Dad]

I can't remember where / when I saw this, but several folks had posted on this forum about being advised by infectious disease specialists to use the combo of clindamycin + rifampin as an "eradication protocol" for virulent, resistant strep. I think this is especially recommended for "carriers." I believe the poster(s) said this was highly effective for their PANDAS children.

[peglem]

Thought some of you might be interested in how this is working out for us. We started rifampin 1 dose/day+875mg augmentin 2x/day last wed. before Thanksgiving. The first 2-3 days: diarrhea and orange pee, but no behavioral improvements-perhaps even a bit worse due to tummy discomfort. I figured the diarrhea proved we were killing bacteria somewhere, anyway. Actually after the 1st day's mess, I started hitting the probiotics hard-1 dose/hour when she wasn't in school. By

day 3, the diarrhea is gone.

 

days 4-6: a bit of improvement in behavior, sleepy. reduction in nasal discharge, but not cleared up yet.

 

day 7: Needed only 1 "basket hold" at school, noticeably improved mood- did not flick lights/fan off and on in dr.'s office. Signed for help, instead of freaking out when she needed computer help.

day 8: much the same as day 7, except she is whimpering and whining when she uses the bathroom, which leads to discovery of a "private" rash. Treat rash with both bactrim and lotrimin (cover all bases)-she is clearly terrified of the ointments, but tries to cooperate because she knows she needs help.

day 9 (today) Amazing day! Terrific at school, dr. visit for rash- completely cooperative, trip to store afterwards....OCD is still clearly present but the assocated anxiety is WAY down....maybe this is working? I have not seen a day as good as this in, well, a very very long time! She does have a yeast infection, and vag. was swabbed for a culture as well.

 

Tomorrow is the last day of the rifampin, but will continue the augmentin at full dose for at least 21 days. Treating the yeast topically for now, will give diflucan on Saturday. Dr. said rifampin+diflucan is a nono.

 

We'll see how she does over the weekend. If she gets worse, I'll call Monday and try to get the rifampin reinstated.

[mom md]

Very interesting...please keep us posted.

[peglem]

Thought some of you might be interested in how this is working out for us. We started rifampin 1 dose/day+875mg augmentin 2x/day last wed. before Thanksgiving. The first 2-3 days: diarrhea and orange pee, but no behavioral improvements-perhaps even a bit worse due to tummy discomfort. I figured the diarrhea proved we were killing bacteria somewhere, anyway. Actually after the 1st day's mess, I started hitting the probiotics hard-1 dose/hour when she wasn't in school. By

day 3, the diarrhea is gone.

 

days 4-6: a bit of improvement in behavior, sleepy. reduction in nasal discharge, but not cleared up yet.

 

day 7: Needed only 1 "basket hold" at school, noticeably improved mood- did not flick lights/fan off and on in dr.'s office. Signed for help, instead of freaking out when she needed computer help.

day 8: much the same as day 7, except she is whimpering and whining when she uses the bathroom, which leads to discovery of a "private" rash. Treat rash with both bactrim and lotrimin (cover all bases)-she is clearly terrified of the ointments, but tries to cooperate because she knows she needs help.

day 9 (today) Amazing day! Terrific at school, dr. visit for rash- completely cooperative, trip to store afterwards....OCD is still clearly present but the assocated anxiety is WAY down....maybe this is working? I have not seen a day as good as this in, well, a very very long time! She does have a yeast infection, and vag. was swabbed for a culture as well.

 

Tomorrow is the last day of the rifampin, but will continue the augmentin at full dose for at least 21 days. Treating the yeast topically for now, will give diflucan on Saturday. Dr. said rifampin+diflucan is a nono.

 

We'll see how she does over the weekend. If she gets worse, I'll call Monday and try to get the rifampin reinstated.

Guess i should remind everyone that the reason we're doing this regimen is because we believe Allie is a carrier- dental work, teething, any oral tissue damage brings on PANDAS symptoms. We're trying to clear carriage.

[fuelforall]

Hi, you said you believe Allie is a carrier. I believe that too about my son but it's hard to prove.

Did you have any basis for this belief? My son doesn't get strep but it turns up in his titers and is tough to eradicate. We boosted zith this week and NOTHING has happened, not even the slightest improvement.

I wonder about the rifampin/Keflex combo, esp if the strep strain is resistant to Zith, as Kelly(PMom) mentioned was the case with her kids. Not sure I want to wait too long on Zith to switch over, the boy has just been a horror 60 percent of the time. Even ibuprofen seems to do little.

 

Michael

[peglem]

Hi, you said you believe Allie is a carrier. I believe that too about my son but it's hard to prove.

Did you have any basis for this belief? My son doesn't get strep but it turns up in his titers and is tough to eradicate. We boosted zith this week and NOTHING has happened, not even the slightest improvement.

I wonder about the rifampin/Keflex combo, esp if the strep strain is resistant to Zith, as Kelly(PMom) mentioned was the case with her kids. Not sure I want to wait too long on Zith to switch over, the boy has just been a horror 60 percent of the time. Even ibuprofen seems to do little.

 

Michael

Allie tested positive for strep almost all the time (there were negative tests, that correlated with symptom remission), even when on phrophylaxis. She seldom got a fever, sore throat, or any typical symptoms when she tested positive. This led 3 specialists to conclude that she was "just" a carrier. But, I thought this was impossible, since they seemed to believe this was benign, and clearly my daughter was having very negative behavioral responses. With explanations from here (once again, I have to thank Buster) I realized that carrier state is not necessarily benign. The big tip-off was this last major flair in September...she did get a fever and was ill (not sure on the sore throat) and that correlated with dental work and she is cutting 4 molars. Then it dawned on us....major exacerbations always happened with teething and dental events (minor ones happen all the time)...tissue damage brings out the actual infection! In defense of our taking so long to make the connection, exacerbations sapped everything out of us...we were not thinking clearly!

[matis_mom]

All,

Now we have everyone in the house on Omnicef x 10 days (except my husband, all he could get was Amoxicilin...) Crossing our fingers and hoping this does the trick to erradicate strep. Pediatrician will test everyone w/culture afterwards (wait two weeks, right?) to make sure it's gone. (I am writing all your experiences down for choices of abxs if this doesn't work)

 

So now I need to know:

 

1) What else do you do to make sure it's actually erradicated, especially in those asymptomatic carriers?

 

2) Has anyone tried any homeopathics/natural remedies to keep the non-pandas children clear?

 

Thanks so much!

 

Isabel

(who just enlightened her OB about Pandas... he had never heard of it but by the time we were done he wrote me a prescription, thanks doc!)

[peglem]

Thought some of you might be interested in how this is working out for us. We started rifampin 1 dose/day+875mg augmentin 2x/day last wed. before Thanksgiving. The first 2-3 days: diarrhea and orange pee, but no behavioral improvements-perhaps even a bit worse due to tummy discomfort. I figured the diarrhea proved we were killing bacteria somewhere, anyway. Actually after the 1st day's mess, I started hitting the probiotics hard-1 dose/hour when she wasn't in school. By

day 3, the diarrhea is gone.

 

days 4-6: a bit of improvement in behavior, sleepy. reduction in nasal discharge, but not cleared up yet.

 

day 7: Needed only 1 "basket hold" at school, noticeably improved mood- did not flick lights/fan off and on in dr.'s office. Signed for help, instead of freaking out when she needed computer help.

day 8: much the same as day 7, except she is whimpering and whining when she uses the bathroom, which leads to discovery of a "private" rash. Treat rash with both bactrim and lotrimin (cover all bases)-she is clearly terrified of the ointments, but tries to cooperate because she knows she needs help.

day 9 (today) Amazing day! Terrific at school, dr. visit for rash- completely cooperative, trip to store afterwards....OCD is still clearly present but the assocated anxiety is WAY down....maybe this is working? I have not seen a day as good as this in, well, a very very long time! She does have a yeast infection, and vag. was swabbed for a culture as well.

 

Tomorrow is the last day of the rifampin, but will continue the augmentin at full dose for at least 21 days. Treating the yeast topically for now, will give diflucan on Saturday. Dr. said rifampin+diflucan is a nono.

 

We'll see how she does over the weekend. If she gets worse, I'll call Monday and try to get the rifampin reinstated.

Saturday- the 1st day w/o rifampin, and we gave the diflucan. Yeast "itch" is waning-we've also been treating with monostat cream. She's still on the 875 augmentin 2x/day. OCD is still there, but anxiety, rages, fight or flight...extremely reduced. She had just 2 wee episodes today. All I had to do was tell her to come let me know when she needs help- then she was okay. This is so good.

[melanie]

Very interesting...please keep us posted.

 

 

I think Dr T uses repferin(sp)I saw on his site Im glad things are good Danny is on the spectrum too.Its a double wammy.Sometimes Im not sure which is what.When you say itchy do you mean just Vaginal itch obviously danny doesnt have that but he does seem a little itchy.I thought it was just the dry skin but maybe he has some yeast build up .Is there Any natural products that help that? I think Im going crazy sometimes!!!

 

Melanie

[peglem]

Very interesting...please keep us posted.

 

 

I think Dr T uses repferin(sp)I saw on his site Im glad things are good Danny is on the spectrum too.Its a double wammy.Sometimes Im not sure which is what.When you say itchy do you mean just Vaginal itch obviously danny doesnt have that but he does seem a little itchy.I thought it was just the dry skin but maybe he has some yeast build up .Is there Any natural products that help that? I think Im going crazy sometimes!!!

 

Melanie

I don't think its a double whammy in our case- I think the autistic symptoms are caused by the PANDAS disrupting development. Remember, autism is just a label for a collection of symptoms. The yeast is likely from the antibiotics. Kirkman's has an anti yeast product. Allie takes prescription meds for yeast. And yes, the itch (for Allie) is vaginal yeast.