Antibiotics: How low can you go?

[emma1]

On another thread, it appears that long term suppresssion therapy might be appropriate for PANDAS. I am trying to speak with my doctor about it. Before I do, here is my question:

 

Does anyone have an opinion regarding the dose of antibiotic that needs to be taken to prevent strep?

 

My daughter is a teen, and pretty close to her adult height/weight. She is on PenVK, taking 500 mg twice a day right now. I am wondering, if she is going to be on this, say, years, if she can go any lower and still be protected (say, 500 mg once a day).

 

Anyone with any thoughts on this?

 

Thanks!!!

[EAMom]

You definitely can't go down to once a day with Pen. In the Swedo DAN! broadcast (that peggysue posted a while back) Swedo mentioned that one problem with pen is that you absoultely need to give it on schedule twice a day. If you miss a dose then you are essentially unprotected against strep for several days.

 

If you want to stick with Pen then I think it makes sense to follow whatever dosing they use for ARF strep prevention.

 

If you want a drug that you wouldn't have to give twice a day (or even every day) you could consider switching to something with a longer 1/2 life (Azith. comes to mind)...the drawback is that Azith. is much more broad-spectrum, a "bigger gun." IMO I would stick with Pen (if it is working for you).

[dee45]

Can the pen be given once a week ?? I thougth I read where it could be done this way. Any clarification would be appreciated.

 

Deanna

[P_Mom]

Hi!

 

There is no way Pen VK can be given once a week, when taken orally...like EA Mom said, you have to give atleast 250 mg twice daily in order for it to be effective. You can give shots of penicillin, Bicillin, which I believe lasts a month, but it is said to be very hard to tolerate . (the injections) Zith can be used once a week...not Pen.

 

Hope this helps.

[dee45]

Hello,

My son finished a course of Omnicef for strep--his pediatrician gave him Penvk 500mg one time a week --I wonder if I should just not give it if it is not doing any good. I had a hard enough time getting that.

 

Deanna

[dcmom]

I have been following this thread, because soon my pandas dd will start prophylactic antibiotics.

 

She has been on amox, cephalosporin and now zithromax at full strength. She is doing better (not 100%). Her neurologist is planning on putting her on prophylactic zithromax (I think he mentioned something about it being easier on her stomach since it will be taken a few times a week). I am of course nervous about this, but more worried about strep or another pandas episode more.

 

Does anyone on the forum do prophylactic zithromax? Any thoughts? Should I try amoxicillin first?

[EAMom]

Deanna...ughhhh! maybe your doc is testing out some kind of placebo effect?

 

This is taken from the original Swedo Azith/Pen study: http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

 

Oral pen has a short half-life and must be given twice daily:

 

The current guidelines established by the American Heart Association

for the prevention of rheumatic fever recommend the use

of oral penicillin at 250mg taken twice a day, however, compliance

is crucial as the short half-life of oral penicillin makes it

difficult to maintain adequate trough levels without continual

redosing (Dajani et al 1995).

Azithromycin has a long 1/2 life can be given weekly (500mg weekly in this study):

 

Antibiotics from the macrolide class have demonstrated efficacy

against GAS infections. One of the antibiotics from this class,

azithromycin, has also been shown to provide effective prophylaxis

against GAS infections at a dose of 500mg taken once a

week (Gray et al 1998). Azithromycin has also been used in

children as prophylaxis against otitis media, with high efficacy

and low rates of adverse events (de Diego et al 2001).

 

My dd is on a much higher dose of Azith (250mg/day at 55 pounds)...she hasn't gotten strep on this dose but nonetheless has exacerbations when family members have strep (or when she got fifth's). Sigh...time for IVIG. Fortunately, the Azith has prevented full blown exacerbations (last spring we had psychotic behavior, acute food refusal, anorexia nervosa with hospitalization) but we currently are having some eating restriction, significant handwriting deterioration, and OCD "movements" thanks to my own (at age 43) strep infection last week. The Azith. is incredibly helpful but not a 100% cure.

 

DCmom...amoxicillin was completely infeffective for us. I think Azith. is also good b/c it is anti-inflammatory/immune modulating. I am assuming the amoxcillin (like pen) must be given twice daily to be effective? (does anyone know the 1/2 life off-hand of amoxicillin?) on the other hand, Azith. is a "bigger gun" antibiotic, so it would be nice to use the less powerful antibiotic if it works.

[emma1]

Wow! I am surprised that missing one dose leaves you unprotected for days!

 

My daughter takes it twice a day. Recently, she went away for a week, and when she came back I noticed two things. She had skipped her dose of meds, including the antibiotic, TWICE in seven days (kids!), and she didn't seem any worse for wear (that is, she wasn't exhibiting the ocd/tics).

 

Our doctor had her on zith about a year ago for around 6 months, I think (the timing is all getting fuzzy). She did well on it. She took a regular z-pac dose, and then began taking every 5 days. But the doctor did not feel comfortable leaving her on it long term. He even threw out something along the lines of, "This is not what this drug was intended for, and therefore, there have not been the numerous long-term studies you would want regarding safety of taking this drug months or years." So, we dropped back to the PenVK, and it does work, so far, for us. By that, I mean most symptoms are gone and/or minimal, and she hasn't had strep. (It wasn't working when we initially switched to the zith -- my daughter was having a lot of symptoms when we switched to zith -- which is why we switched to zith. The zith calmed everything down significantly. It still wasn't perfect, as there was some ocd remaining that we needed to use other supplements to help.)

 

Right now, I am strongly advocating we continue. I am thinking she might be on it only for the preventative effect right now -- but I do want to prevent more strep! I was really hoping that once a day was OK though!

[dee45]

Hi,

how much Penvk is your daughter on? Hope she continues to do well.

 

Deanna

[lismom]

Hi,

how much Penvk is your daughter on? Hope she continues to do well.

 

Deanna

 

 

Emma1 and anyone on Zithromax, can I have more info on your use of Zithromax? My son has been sick for 4 months now. The only thing that seem to help some was Zith. He had one 5 pack and then on day 11 was right back where we started. I pleaded for more and had to be approved by insurance and they only gave me 15 pills right now. He has been on it for six days and it took five of those to see any sign of improvement. Not 100% but better then he was. My big question is were you on 250 a day for a while? Did it take a little time to see more improvement? I believe my son has strep somewhere in his body, was never treated long enough and strong enough. Help, I want to make sure I am doing this right. Thanks, Kathy.

[dcmom]

My daughter improved immediately, about 50% on another antibiotic, a cephalosporin. This was after 4 weeks of extreme anxiety & OCD. She seemed stuck at that point, for about a month, with little or no more improvement. I took her to another neurologist and told him I wasn't happy with dd's progress. He suggested Zithromax. We did 10 days, with no change. He gave me 10 more days, and last week, around day 20, we saw another pretty big improvement. Still has some of the ocd issues to struggle with. Anxiety and appetite, and general happiness is much improved. It has been about 8 days, and I am hoping it lasts. We are going to switch to prophylactic Zithromax.

 

Apparently the neurologist felt that if she was a carrier, or if the strep was resistant, or intracellular, Zithromax would help. I guess it did?

 

I certainly think it is worth a try for 20 - 30 days, I would go from doctor to doctor, untill you could get it. It is impossible to watch these kids suffer.

[lismom]

My daughter improved immediately, about 50% on another antibiotic, a cephalosporin. This was after 4 weeks of extreme anxiety & OCD. She seemed stuck at that point, for about a month, with little or no more improvement. I took her to another neurologist and told him I wasn't happy with dd's progress. He suggested Zithromax. We did 10 days, with no change. He gave me 10 more days, and last week, around day 20, we saw another pretty big improvement. Still has some of the ocd issues to struggle with. Anxiety and appetite, and general happiness is much improved. It has been about 8 days, and I am hoping it lasts. We are going to switch to prophylactic Zithromax.

 

Apparently the neurologist felt that if she was a carrier, or if the strep was resistant, or intracellular, Zithromax would help. I guess it did?

 

I certainly think it is worth a try for 20 - 30 days, I would go from doctor to doctor, untill you could get it. It is impossible to watch these kids suffer.

 

That is what happened when we tried amox and augmn. I was thinking because my son was sick for so long that it is going to take a while. I pray. My 1st pediatrician wasn't willing to treat everyday full strength. She said his liver is at risk. She was willing to give 1000mg once a week. From seeing how sick my son has been and reading info from the smart people on this sight, my instinc would be that is not enough yet. I have an appt with a new pediatrician today and will discuss my thoughts about Zith.

 

What prophylactic dose are you thinking of doing?

[EAMom]

Hi Lismom,

 

if the new ped is reluctant to do a higher dose of Azith then try a pediatric rheumatologist. Ours was extremely comfortable with continuing the 250mg/day Azith (for years!!...even beyond my comfort level!). I think rheumatologists (in general) are less fearful of antibiotics (and certain other meds). We did check a liver panel (after 10 mo. of Azith at this dose) and everything was totally normal. Perhaps if your ped is worried you could do a liver panel before (to make sure everything is ok initially/get a baseline) and then again after 3-4 weeks of Azith?

 

My dd is 55 pounds now, when she started she was 45 (eating disorder from pandas, and she grew a bit in the past year). If your child is closer to adult size then I would do 500mg/day of the Azith. Once your son is closer to normal (after a couple of months of Azith), then you could consider lowering the dose (we didn't however).

[peglem]

Hi,

how much Penvk is your daughter on? Hope she continues to do well.

 

Deanna

 

 

Emma1 and anyone on Zithromax, can I have more info on your use of Zithromax? My son has been sick for 4 months now. The only thing that seem to help some was Zith. He had one 5 pack and then on day 11 was right back where we started. I pleaded for more and had to be approved by insurance and they only gave me 15 pills right now. He has been on it for six days and it took five of those to see any sign of improvement. Not 100% but better then he was. My big question is were you on 250 a day for a while? Did it take a little time to see more improvement? I believe my son has strep somewhere in his body, was never treated long enough and strong enough. Help, I want to make sure I am doing this right. Thanks, Kathy.

 

My daughter's doctor was worried about liver problems on zith, but when other antibiotics failed, here's what he worked out: 5 days of 250mg of zith, then 7 days to get it out of her system, then 5 days on again, etc..

At first we would see sx returning on @ the 4th day off. Over time it started lasting to the 5th day off and at this point, about 18 months into it, we see no sx in between dosing periods. I am thinking about switching back to penvk (I think the zith has taken out the biofilms, my daughter had chronic strep), but, I like having the 7 days off to fight yeast.

[lismom]

Hi,

how much Penvk is your daughter on? Hope she continues to do well.

 

Deanna

 

 

Emma1 and anyone on Zithromax, can I have more info on your use of Zithromax? My son has been sick for 4 months now. The only thing that seem to help some was Zith. He had one 5 pack and then on day 11 was right back where we started. I pleaded for more and had to be approved by insurance and they only gave me 15 pills right now. He has been on it for six days and it took five of those to see any sign of improvement. Not 100% but better then he was. My big question is were you on 250 a day for a while? Did it take a little time to see more improvement? I believe my son has strep somewhere in his body, was never treated long enough and strong enough. Help, I want to make sure I am doing this right. Thanks, Kathy.

 

My daughter's doctor was worried about liver problems on zith, but when other antibiotics failed, here's what he worked out: 5 days of 250mg of zith, then 7 days to get it out of her system, then 5 days on again, etc..

At first we would see sx returning on @ the 4th day off. Over time it started lasting to the 5th day off and at this point, about 18 months into it, we see no sx in between dosing periods. I am thinking about switching back to penvk (I think the zith has taken out the biofilms, my daughter had chronic strep), but, I like having the 7 days off to fight yeast.

 

Thanks emma1 and eamom. I think I am going to push for atleast a month on 250 a day. My son is 12 and 90 pounds. I will give it a little time. Can you see improvement for a couple of days then maybe a step back on another day? It sounds like it takes time for the zith to really kick in. I hope that's right. I was so incouraged to see some improvement last couple of days and today he isn't as good.

 

Emma1, what are you fighting yeast with? Right now I do twice a day with a powder probiotic he takes straight.