PANDAS and Zithromax

[emma1]

My daughter is on 2 tablets (500 mg) zithromax every 5 days. Does anyone know of any papers, research, etc. that can be shown to a doctor to support this? My doctor has concerns about using this long term. Also, for those on it, do you have any blood tests, etc. done (that is, do you need to monitor anything)?

[michele]

I have had the the same battle and could not find much research to back that azith works best to prevent reocurrences of PANDAS episodes. I would also welcome the articles if others have found them. We have had good luck with omnicef but I don't know that there is much research on this either. Here is some research I found on antibiotics used for PANDAS. It would help if there were more studies out there. Having these studies to hand to a Dr would help alot with getting the right treatments.

 

http://www.medicalnewstoday.com/articles/35136.php

http://www.sciencedaily.com/releases/2004/...40405085138.htm

http://findarticles.com/p/articles/mi_m322...71/ai_n13684250

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

http://www.latitudes.org/forums/index.php?...art=#entry15422

http://www.urmc.rochester.edu/pr/news/story.cfm?id=981

http://www.childadvocate.net/PANDAS_relatives.htm

http://cat.inist.fr/?aModele=afficheN&cpsidt=16733219

 

 

Michele

 

My daughter is on 2 tablets (500 mg) zithromax every 5 days. Does anyone know of any papers, research, etc. that can be shown to a doctor to support this? My doctor has concerns about using this long term. Also, for those on it, do you have any blood tests, etc. done (that is, do you need to monitor anything)?

[myrose]

emma1...are the antibiotics working for you? Can you comment to progress when you have time

[peglem]

My daughter has been on a zith regimen since @ December...250mg daily for 5 days then 7 days off. She gets her liver enzymes checked every 2-3 months. Don't have any research for you, but I know that zith builds up in body tissues, instead of just going in, killing the bacteria and exiting. That's why the rest in between dosing-to clear it out of tissues before re-dosing.

 

Zith was not our pediatrician's 1st choice either, but it is the one that seems to work best. He did check with an infectious disease specialist 1st.

[emma1]

I am not sure exactly what to say re: progress. A little while back, we had an "explosion" of ocd while on the Pen VK. I tried the zith, with the doctor's approval, and waited, but things didn't seem to be improving. Then we got to day 5, and I had been told to give one 250 mg cap, and things continued without improvement. I conferred with Cheri (thanks Cheri!!!!) and started her on Sam-E and inositol and a probiotic. We also saw a therapist. On Day 10, I tried 2 250 mg caps. Somewhere in there, everything got good again. So I am happy, but because I tried more than one thing at one time (adjusting the zith while she was also gearing up on the Sam-E), not sure exactly what is helping the most. I am pretty confident that the Sam-E is helping; less sure about the zith -- but since everything is good, I'd like to keep it all the same for a while at least.

[michele]

Emma,

One thing to keep in mind, even while on the antibiotics with exposure to illness the antibodies will still rise that can cause a suttle increase in behaviors. Last week my son had a few off days and here I found out someone in his class had strep plus we had colds at home. However, he still wasn't as bad as in the past. I just saw he was easier agitated emotionally and his gross motor and muscle fatigue seemed worse. We have not had any real visible tics however. Have you? It is interesting because his OT saw the difference too without my mentioning the strep exposure. Just remember they still can have rough patches when ill plus your daughter would have monthly hormones that can cause things to worsen.

 

Michele

 

I am not sure exactly what to say re: progress. A little while back, we had an "explosion" of ocd while on the Pen VK. I tried the zith, with the doctor's approval, and waited, but things didn't seem to be improving. Then we got to day 5, and I had been told to give one 250 mg cap, and things continued without improvement. I conferred with Cheri (thanks Cheri!!!!) and started her on Sam-E and inositol and a probiotic. We also saw a therapist. On Day 10, I tried 2 250 mg caps. Somewhere in there, everything got good again. So I am happy, but because I tried more than one thing at one time (adjusting the zith while she was also gearing up on the Sam-E), not sure exactly what is helping the most. I am pretty confident that the Sam-E is helping; less sure about the zith -- but since everything is good, I'd like to keep it all the same for a while at least.

[emma1]

Honestly, Michele, that "swing of symptoms" is the thing that drives me crazy. You are going along thinking all is well; and then it is not.

 

I thought once we switched to zith, and had some success, we would just stay on it. But my doctor seems very hesitant. I have a couple of doses left and then I'm not sure what will happen.

[Ronnas]

Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE.

Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov

 

BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup.

.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE.

 

The publication I took and discussed with our doctor.

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

[emma1]

Thank you so much for the article. I am copying it and sending it to my doctor.

 

As I read it, however, I am not sure my doctor will support the zithromax. The article seemed to urge caution regarding zithromax use. I wanted to switch because the Pen VK stopped working. I also note, the zithromax in this study was used once per week (every 7 days, I guess?) where I have been giving it every 5 days.

 

Anyone having success using this every 7 days?