Cleocin- any success with this?

[AmySLP]

We had a wonderful experience with a covering pediatrician last Sat. Based an e-mail I received back from Dr. Swedo, she recommended we d/c the Amox. prophylaxis for three days and then culture. THis happened to fall on a Saturday, therefore, we saw this wonderful new doctor who was on call. Prior to doing the culture, I asked him what he knew about PANDAS. WHen he could rattle of some of the basics, I felt relieved. Finally a doctor in my community that knew something about it. He told me he had recently attended a seminar in Albany, NY where this was one of the topics. He indicated that what he took from it was that although they don;t really know the WHY yet, what the research shows is that for some unknown reason these kids respond to antiobiotics. The doctor who presented impressed upon him that it was important to treat these symptoms (even though Allison was negative with this culture-I knew it was too soon but wanted to follow Dr. Swedo's advice). He suggested we try Cleocin b/c it was the strongest. I told him that Dr. Swedo suggested that the next time the strep was positive, she said our pediatrician should follow the "red book" for treatment. I looked at the "red book" there were several treatment options, I'm not sure if Cleocin is one of the forms of drugs recommended for kids that are allergic to penicillian. This doctor took all the research I had with me to read over. Said he'd research the whole T & A issue (which my current pediatrician is not willing to do)but suggested we hold off with surgery to give these other ABX a try. He gave me his e-mail to keep him posted. I e-mailed him today asking him to consider taking Allison as patient (his receptionist told me they're not accepting new pts.) He's gotta take her b/c I've had it with my current pediatrician. I had been thinking it was time to switch-so finding him was an answer to a prayer!

 

Any insight/experience with Cleocin?

 

Thanks,

Amy

[kim]

Amy,

 

Sure is nice to hear that you actually ran into a Dr. that was willing to help!

 

You might want to use the search feature and type in Clindamycin (Cleocin). I know it has been discussed here.

[EAMom]

That sounds like a good ped. Hopefully you will be able to convince him to take your dd as a patient! I take it as a good sign that he gave you his e-mail.

 

Our experience with Cleocin wasn't great. Apparently, our ped looked at the same little red book and decided that was the best choice to clear our then 5-year-old dd (non-pandas) of her strep carrier state. Augmentin had already failed. Unfortunately, we couldn't get beyond the first dose b/c our dd found the taste so repulsive (it did smell very bad). It took about an hour (lots of tears shed) to get that one dose down. Needless to say, we ended up switching to Azith. which did clear her carrier state. I'm not sure why that little book says Clindamycin is so great. The pharmacist said it is hardly ever used it (I don't know if it was the taste). Ours was a special order. If your dd takes pills, then it might be fine.

 

I do wonder what the "red book" bases it's assessment (that Clindamycin is strongest) on. It probably actually depends on the strain of strep and whether it is intracellular. This is from Kaplan's paper http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 on intracellular strep, where macrolides (eg Azith.) are found to be more effective than clindamycin:

 

These 3 techniques confirmed that erythromycin or azithromycin effectively killed the ingested, susceptible GAS, whereas penicillin had no lethal effect. Cephalothin and clindamycin also killed ingested GAS but were less effective than erythromycin or azithromycin.

[colleenrn]

The summer before my daughter's T and A, each antibiotic we were using seemed to not work anymore (I think, but it was 7 yrs. ago it was Amoxicillin and Augmentin are the only ones I can remember ) so we switched to Clindamycin.

 

My daughter had been on Amoxicillin which worked for a while, then all her PANDAS symptoms returned, we switched to Augmentin and all symptoms were gone for maybe 2 months, at which time she woke up one morning repeating hte same phrase over and over again for hours. I was devestated and desperately researching what to put her on. I never considered Azithromycin and I am not sure why. I called the doctor at our practice who was the most liberable with antibiotics and asked for Clindamycin. Within one day she was 50% better, the next day almost 100%. I agree, the liquid is absolutely horrible tasting, but I would give her chocolate afterwards to take away the bad taste. We had great success with Clindamycin, but I feel we would have had the same success with Azithromycin had we used that at the time.

I kept her on the Clindamycin until a week before her T & A. There is a slight increase in bleeding risk with Clindamycin and given that she was having surgery soon, I decided to stop it for that reason. Her PANDAS symptoms came back full force two days after stopping it. Her tonsils and adenoids were removed and things got better b/c her tonsils were harboring strep constantly and now that they were gone, that source was removwed.

Colleen

[AmySLP]

We had a wonderful experience with a covering pediatrician last Sat. Based an e-mail I received back from Dr. Swedo, she recommended we d/c the Amox. prophylaxis for three days and then culture. THis happened to fall on a Saturday, therefore, we saw this wonderful new doctor who was on call. Prior to doing the culture, I asked him what he knew about PANDAS. WHen he could rattle of some of the basics, I felt relieved. Finally a doctor in my community that knew something about it. He told me he had recently attended a seminar in Albany, NY where this was one of the topics. He indicated that what he took from it was that although they don;t really know the WHY yet, what the research shows is that for some unknown reason these kids respond to antiobiotics. The doctor who presented impressed upon him that it was important to treat these symptoms (even though Allison was negative with this culture-I knew it was too soon but wanted to follow Dr. Swedo's advice). He suggested we try Cleocin b/c it was the strongest. I told him that Dr. Swedo suggested that the next time the strep was positive, she said our pediatrician should follow the "red book" for treatment. I looked at the "red book" there were several treatment options, I'm not sure if Cleocin is one of the forms of drugs recommended for kids that are allergic to penicillian. This doctor took all the research I had with me to read over. Said he'd research the whole T & A issue (which my current pediatrician is not willing to do)but suggested we hold off with surgery to give these other ABX a try. He gave me his e-mail to keep him posted. I e-mailed him today asking him to consider taking Allison as patient (his receptionist told me they're not accepting new pts.) He's gotta take her b/c I've had it with my current pediatrician. I had been thinking it was time to switch-so finding him was an answer to a prayer!

 

Any insight/experience with Cleocin?

 

An Update....3/29/09....I don't think this was our "cure"- although I've been trying to deny to myself the emotional and behavioral problems which are becoming apparent the last few days (Last dose of cleocin was 3/23), Allison had several emotional breakdowns during a party yesterday that make it unmistakable that the PANDAS symptoms are returning. She is a well behaved child in the presence of adults and only has had these outbursts over the last few months when not on antibiotics. The amazing thing-no tics yet. I am treating her topically for a yeast infection with Nystatin. Interestingly the tics seemed to stop when I started using that (they were nearly noticeable during the last few days of the Cleocin, so this is likely a big coincidence).

 

We are seeing Dr. Beth Latimer in DC this coming week. Maybe it will be good to have the symptoms return for her to see.

Amy

 

Thanks,

Amy