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PANDAS: Prophylactic dose of Azithromycin for 5 year old


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I am taking my 5 year old son for a throat culture today as he is showing behavioral signs of strep (no physical symptoms). My 12 yo daughter, 7 year old son, and 5 year old son all have PANDAS. It was a clear cut case for my daughter and son, but I have been trying to figure out if my 5 year old falls into the same category as he shows no signs of tics or OCD behaviors. His is all hyperactivity, very labile, irritable, explosive, etc... I am pretty sure it is PANDAS with him and I think strep keeps recolonizing in his tonsils b/c they are so huge. My other two children has their tonsils and adenoids removed for the same reasons. Before they were removed the strep kept recolonizing every time they would stop antibiotics and the ENT said the reason was b/c the tonsils were so large and cryptic. IF my son has strep this time I want to put him on a prophylactic dose of Zithromax, but do not know if it would still be the 500 mg/week. He is 5, but very small for his age. He weighs 40 lbs. Any help would be GREATLY appreciated.

Colleen

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Hi,

 

my 8 year old dd is on 250mg Azithromycin a day. She weighs about 50 pounds now, although she got down to 42 when during part of her PANDAS episode (anorexia nervosa). (This dose was okayed by pediatric rheumatologist at Stanford.)

 

Diana's son (also 8, but bigger, not sure of his weight exactly) was on 250mg/day...when she went down to 125mg/day he got a reoccurence of symptoms (x 6weeks) when he was exposed to strep at little sister's preschool.

 

However, the swedo study used 500mg/week....

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

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EAmom,

I was wondering how you decided on Azithromycin 250 per day for your daughter. My son is finishing his 5 days of Zith tomorrow and I have seen a little improvement over the past two days. His 72 hr. culture was negative this week, but my dr agreed to Zith b/c I was seeing behaviors convincing me he had strep. I feel he may have had strep since Aug. as he was positive in July, but only treated with 5 days of Zith at that time. I want to ask my dr to give me another 5 days, possibly longer, then maybe try it prophylactically. Any guidance or suggestions as far as how long I may try the Zith and then if we switch him to a prophylactic dose, how much. He is 5 1/2, but only weighs 43 lb. The more I read about intracellular strep, the more I think that could be what is going on with him and has been going on with my 7 and 12 yr. old b/c their rapid strep tests ALWAYS come back negative.

Thanks! Colleen

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I believe our ped originally decided on the dose (1st 5 days)...but this is the same dose that Diana's son was on (our kids have the same psychiatrist, we had talked on the phone at that point, Diana encouraged us to do the Azithromycin longer term b/c her son responded well to it). We were a bit underwhelmed with the response after 5 days, but did notice dd was yelling at us less. She still had lots of OCD, not eating well, tics etc. We stopped for a few days and she started to yell more again. We called our psychiatrist at that point and she wrote us a rx for 30 days. (Or ped was on vacation in another state at that point).

 

After about 10 days of Azithromycin, dd started "decided she wanted to get better" and started eating 3 meals a day, soon adding on snacks. (Before that there were many days were she was eating 1 meal/day and the eating disorder docs were talking about re-hospitalizing her.) Her mood was also greatly improved and her contamination fears were finally gone. Interestingly, during this period she had lots of nose stuffiness and nosebleeds. A lot of PANDAS kids seem to have problems with nose stuffiness...I'm not sure what that is about.

 

I believe Diana's son also took about 10 days to have a noticeable change from the Azithromycin.

 

In anycase, I think a 30 day (or 60 day) trial is a safe thing to do. I have heard of others on this board getting a 30 day trial of Azithromycin. It seems like 5 days isn't enough to see a big difference for these kids. At 1 mo. our dd was not quite 100% but very close. She still had still some "edginess", tics/movements. At 2 mo. I would say she was 100%. We think the advil we gave for 2 mo. (200mg/every morning) helped too. We stopped the Ibuprofen in August but we are reluctant to decrease the Azithromycin dose since school is now in session (complete with strep notices!). We are debating switching to pen. in the spring or summer on the theory that the strep should really be gone by then.

 

We also think a big part of why the Azithromycin is so effective is due to it's anti-inflammatory/immune-modulating effects. Decreasing the auto-immune response.

 

We just weighed dd...54.5 pounds/49 inches (she grew an inch or two since the spring). When she was hosp. for Anorexia in March she got down to 42 pounds.

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EAMom,

Thank you for your response and info. I was able to get the doctor to agree to Zithromax for my son even though the 72 hr. culture was negative. He finished the 5 days yestyerday andI have definitely seen a difference in him. His vocal tic is gone and he is much less labile, more able to tolerate frustration. I just got off the phone with the nurse at my doctor's office after leaving a message I would like at least another course of antibiotics, explaining why (the successs other PANDAS families have had with Zith). The nurse said the doctor said "no. wait 7 days and see if things get better". UGH... I told the nurse that is not what I want, that I want at least another 10 days-30 days worth. I tried about how it could be intracellular strep, thus taking longer to respond to the Zith. Does anyone have any ammunition I can use to get them to go along? How did you get long term Zith? Thanks! This is so frustrating, especially since the dr/nurses know very little about PANDAS and think I am nuts or inventing this treatment on my own.

Colleen

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We had no problem getting the zith. long term b/c:

1) dh is pushy (but not in a way that would be interpreted as "here's another crazy parent")

2) I suspect ped felt bad about missing the PANDAS diagnosis early on

3) dd had spent 1 week in hosp. in March due to PANDAS (anorexia nervosa) and the eating disorder docs were wanting to re-hosp. in May...so things weren't going so well

4) our psychiatrist was very clued in and had another patient (Diana's son) who was on Zith. 250mg/day prophalactically...frankly, at the time, dd's psychiatrist was our only advocate for long term prophylactic antibiotics. Everyone else was trying to discourage us from using them, which makes no sense since younger sister is a strep carrier (as least temporarily cleared with 5 days of Azithromyin in April...until she gets strep again).

 

You might have a case for more Zith. if your son regresses once off the Zith? Keep good records on how he responds/track his behavior. I think that will help. Unfortunately, we don't really know at what point the strep is killed off, esp. in the more severe PANDAS cases. IMO these kids don't have normal immune systems so we can't necessarily compare them to other kids.

 

Also, since Azithromycin is immune-modulating, I suspect it would help prevent PITAND type reactions in PANDAS kids. Whereas Pen, would not effect the immune response, so even though it may prevent another strep infection, it would not prevent an abnormal immune response to other illnesses.

 

You could also try the approach of..."what harm could it do to put ds on Azithromycin for 30 days?" Diana e-mailed some expert (Dr. Gupta I think???) at some point on this (risks of long term Azithromycin). He felt it was quite safe. In other words, ask them to explain and show you actual studies documenting the risks of using Azithromycin for 30 days (it unlikely that they will be able to produce any). Certainly, Azithromycin for 30 days is safter than most psych. meds (complete with black box warnings).

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My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

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Here's a cystic fibrosis/long term azithromycin study. Kids under 40kg got 250mg/day. No side effects of the azithromycin were noted. http://www.ncbi.nlm.nih.gov/pubmed/12383667 As a note, the kids in the study were older than colleen's (8 and up) but they were on Azithromycin for many months, not just 30 days.

 

I would like to eventually switch dd to pen. We're just not ready to mess with what is working for the time being, esp. with school in session (complete with strep notices.) Amoxicillin did not work for us, but I suspect strep was still present at the time. Hopefully the strep is gone by now...but it's hard to say. It's also hard to say how much benefit is from the immune-modulation of Azithromycin.

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My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

 

Hello,

I am just wondering what part of the country you are located in. I'm in the SF bay area, and am having a hard time finding a cooperative pediatrician. It looks like you've found someone that understands PANDAS issues. Thanks,Peggy

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My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

 

Hello,

I am just wondering what part of the country you are located in. I'm in the SF bay area, and am having a hard time finding a cooperative pediatrician. It looks like you've found someone that understands PANDAS issues. Thanks,Peggy

 

I'm in Phoenix, Arizona and what I found was a pediatrician who was willing to learn and help me figure things out. It may help if you look for a DO (doctor of osteopathy). I don't know what makes them so different, but have found that they are usually great about listening to the patient and trying alternatives if they make sense.

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My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

 

Hello,

I am just wondering what part of the country you are located in. I'm in the SF bay area, and am having a hard time finding a cooperative pediatrician. It looks like you've found someone that understands PANDAS issues. Thanks,Peggy

 

I'm in Phoenix, Arizona and what I found was a pediatrician who was willing to learn and help me figure things out. It may help if you look for a DO (doctor of osteopathy). I don't know what makes them so different, but have found that they are usually great about listening to the patient and trying alternatives if they make sense.

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Hey,

 

I live in Harford County Maryland outside of Baltimore. Anyone know of a cooperative pediatrician or psychiatrist. I am pretty well connected with Johns Hopkins and have a really good pediatrician. I am going to email JH now and talk with Ped. as soon as I can get appt. and see what happens but I want a back up plan. We ruled out PANDAS once before but that was 18 months ago and my son's tic symptoms seemed to gradually get better. But he had Mono sometime between this past spring and July - titers tested high. Tics came back - I thought it was stress. Tic has faded again but now he walks around smelling his hands and his new school is seeing impulsive behaviors whereas his previous school saw none. I have always thought him to be anxious but I am really thinking it is PANDAS now. Thanks...

 

 

My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

 

Hello,

I am just wondering what part of the country you are located in. I'm in the SF bay area, and am having a hard time finding a cooperative pediatrician. It looks like you've found someone that understands PANDAS issues. Thanks,Peggy

 

I'm in Phoenix, Arizona and what I found was a pediatrician who was willing to learn and help me figure things out. It may help if you look for a DO (doctor of osteopathy). I don't know what makes them so different, but have found that they are usually great about listening to the patient and trying alternatives if they make sense.

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  • 2 years later...

We had no problem getting the zith. long term b/c:

1) dh is pushy (but not in a way that would be interpreted as "here's another crazy parent")

2) I suspect ped felt bad about missing the PANDAS diagnosis early on

3) dd had spent 1 week in hosp. in March due to PANDAS (anorexia nervosa) and the eating disorder docs were wanting to re-hosp. in May...so things weren't going so well

4) our psychiatrist was very clued in and had another patient (Diana's son) who was on Zith. 250mg/day prophalactically...frankly, at the time, dd's psychiatrist was our only advocate for long term prophylactic antibiotics. Everyone else was trying to discourage us from using them, which makes no sense since younger sister is a strep carrier (as least temporarily cleared with 5 days of Azithromyin in April...until she gets strep again).

 

You might have a case for more Zith. if your son regresses once off the Zith? Keep good records on how he responds/track his behavior. I think that will help. Unfortunately, we don't really know at what point the strep is killed off, esp. in the more severe PANDAS cases. IMO these kids don't have normal immune systems so we can't necessarily compare them to other kids.

 

Also, since Azithromycin is immune-modulating, I suspect it would help prevent PITAND type reactions in PANDAS kids. Whereas Pen, would not effect the immune response, so even though it may prevent another strep infection, it would not prevent an abnormal immune response to other illnesses.

 

You could also try the approach of..."what harm could it do to put ds on Azithromycin for 30 days?" Diana e-mailed some expert (Dr. Gupta I think???) at some point on this (risks of long term Azithromycin). He felt it was quite safe. In other words, ask them to explain and show you actual studies documenting the risks of using Azithromycin for 30 days (it unlikely that they will be able to produce any). Certainly, Azithromycin for 30 days is safter than most psych. meds (complete with black box warnings).

 

Does this mean that azithromycin will help strep and pneumonia, but will make the body stop fighting against ordinary things like the flu or a cold, whereas pen v will still keep the body fighting against things?

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