Reducing ABX?

[Joan Pandas Mom]

Dr. K recommended going from 875 mg 2x a day to 500 mg in am only. Has anyone else tried this? Suggestions? Recommendations PLEASE. I am really nervous about doing this.

[amy s]

I am assuming you are talking about dosing of Augmentin.

For my dd, at the time of IVIg she was only taking 250mg of Augmentin and so she continued that. I know what you mean about being scared to change anything that seems to be working. Good luck!

[Joan Pandas Mom]

Thanks, and sorry I forgot to mention that, yes it is Augmentin. I also forgot to mention, my son is 6'1" and about 158 lbs.

Edited June 12, 2010 by Joan Pandas Mom

[7upMom]

This was exactly what we did. My 9 y/o was on 875 twice a day preIVIG and for approx 2 weeks after until it ran out-- since Dr K has done continuous scripts for augmentin 500 only in am. We are now 8 wks post ivig and the reduction in aug has not been a problem for us ( I was very nervous about the dosage also)

The only thing was I did ask a couple weeks ago about possibly up'ing the antibiotic to see if it would help alleviate his tics. Behaviorally he is 90% better on symptoms but he does have motor tics and verbal tics quite a bit and some ocd remaining. The ivig so far has not touched on helping with his tics at all. Dr K thought it would be best to give it some more time for him to continue to heal at the dosage he is on (500) and see how this goes before up'ing it any.

He is scheduled for a t&a next month though and Dr K said we will increase it before, his ent wants iv antibiotics during, and after increase also. I am curious to see how this will affect his tics, if any. But as far as switching down to the 500 mg, I know it is nervewrecking, but we have not had issues with it.

[Fixit]

This was exactly what we did. My 9 y/o was on 875 twice a day preIVIG and for approx 2 weeks after until it ran out-- since Dr K has done continuous scripts for augmentin 500 only in am. We are now 8 wks post ivig and the reduction in aug has not been a problem for us ( I was very nervous about the dosage also)

The only thing was I did ask a couple weeks ago about possibly up'ing the antibiotic to see if it would help alleviate his tics. Behaviorally he is 90% better on symptoms but he does have motor tics and verbal tics quite a bit and some ocd remaining. The ivig so far has not touched on helping with his tics at all. Dr K thought it would be best to give it some more time for him to continue to heal at the dosage he is on (500) and see how this goes before up'ing it any.

He is scheduled for a t&a next month though and Dr K said we will increase it before, his ent wants iv antibiotics during, and after increase also. I am curious to see how this will affect his tics, if any. But as far as switching down to the 500 mg, I know it is nervewrecking, but we have not had issues with it.

 

 

i'm sorry i see its been 8 weeks.....

how long has it been since ivig???

do you know if he has any yeast, fungus, bacteria problems....

going forward i don't think i'll put my kid on abx w/o an antifungal too......we are having too many problems getting this under control thou. things are better

 

on another thought.....i know that some are using other biomedical things ...that seem to take the edge off post ivig...maybe you could use something like that...

spironolactone,ldn.........

are the tics basicly the biggest problem now.???....so it didn't help any on that......did the tics get worse

did doc k think you would need 2 ivigs...?????

Edited June 12, 2010 by Fixit

[7upMom]

For us no the ivig has not helped the tics any at all. His tics go up and down as far as whether they are better or worse depending upon the day but yet everyday yes, they are a regular part of his life. My 9 y/o will say- if this is all I have left are the tics, i am happy because I feel so much better. This is promising for us and we feel the same way, but still yes I would like to see him get rid of the tics esp the verbal ( this can frustrate people very easily because quite honestly it can be really annoying if you let it- we smile and try to just keep his self esteem high) I don't think reducing the antibiotic from 875 to 500 was the cause though, but Dr K does say tics are one of the hardest symptoms to alleviate and it seems like it takes the longest amount of time also. So no he is not reccommending a second ivig at this time, but time and we are fine with that, he is full of joy now and happy and we are enjoying him ( thats been a long time coming) so we are willing to patiently wait at this time as long as we don't go backwards. Personally, we would prob want a higher dose antibiotic if it comes to that before a second ivig- it is more in our budget ( : but if the rages were to come back I would do ivig again in a heartbeat.

[thereishope]

I believe it has been mentioned on here before that Augmentin is most effective when taken twice a day due to its half life.

[T_Mom]

I believe it has been mentioned on here before that Augmentin is most effective when taken twice a day due to its half life.

 

 

Vickie--how do you think that pertains to taking Augmentin XR once a day?

 

I wonder if going to 1000 mg of Augmentin XR once a day is a 24 hour coverage--?

[thereishope]

I think this is where I remember reading about antibiotics and being given once a day vs twice a day. TMom, I've never been that knowledgable about antibiotics, just basic info. So, I don't have an answer on that. Sorry.

 

DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep.

 

Once daily Kelfex will not prevent strep....its half life is too short (about an hour). By 4-5 hours the Kelfex will be totally cleared out of her system. To my knowledge, Azithromycin (half life is 68 hours) is the only oral antibiotic that can be given once daily to effectively prevent strep.

IMO...once daily Keflex is just encouraging the strep to become resistant to that antibiotic.

 

Anyway, here's my question:

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

For us, Augmentin and a cephalosporin (stronger version of Kelfex) didn't work either, but Azith. did. But, I agree with the others that Clindamycin (possibly with rifampin) would be another good choice.

Edited June 12, 2010 by Vickie

[Worried_Dad]

We have great respect for Dr. K, but I feel compelled to sound a warning here. Our son (just turned 14) has done 3 rounds of IVIG with Dr. K in Chicago. We, also, were placed on the "standard" prophylactic dose of augmentin (not XR): 500 mg, once per day. Bluntly put - it did not work for our son. He caught several more infections while on this dose, including one which triggered his 3rd and most severe PANDAS exacerbation ever.

 

Per Dr. K, we did 2 full rounds of IVIG (1.5 mg / kg over 2 days, repeated again after 28 days) last summer. Our son did not make much progress after these procedures. That was when - out of desperation - we begged Dr. K to try the "Saving Sammy" dose of XR for our son (1000 mg of XR twice daily). Only then did we see significant progress, which has continued steadily on that dose.

 

So - based on our son's painful experience - I don't believe 500 mg of augmentin once a day is sufficient to protect a PANDAS child, even in the wake of IVIG. And our son is only about 110 lbs. If your son is 158 lbs, then 500 mg daily seems way too low to me.

 

Just one opinion... but one formed after 3+ years of very painful experience. If you're spending the money on IVIG, I believe it's prudent to do everything possible to minimize the risk of subsequent infection!

 

 

Dr. K recommended going from 875 mg 2x a day to 500 mg in am only. Has anyone else tried this? Suggestions? Recommendations PLEASE. I am really nervous about doing this.

[7upMom]

Worried Dad<

Are you then coming up to your year of antibiotics that Dr K does? Is he going to extend this longer for your son? I appreciate your post on this- as we have not seen anything "bad" happen yet since ivig just improvement, but at the same time we have asked Dr K to up antibiotic to see about improvement from tics and he has not done so at this time, but after reading this, it is that same sinking feeling of I do not want to wait until its reactive anymore but def learned to be proactive and esp since spending this kind of money that we would have a hard time doing again.

 

We have great respect for Dr. K, but I feel compelled to sound a warning here. Our son (just turned 14) has done 3 rounds of IVIG with Dr. K in Chicago. We, also, were placed on the "standard" prophylactic dose of augmentin (not XR): 500 mg, once per day. Bluntly put - it did not work for our son. He caught several more infections while on this dose, including one which triggered his 3rd and most severe PANDAS exacerbation ever.

 

Per Dr. K, we did 2 full rounds of IVIG (1.5 mg / kg over 2 days, repeated again after 28 days) last summer. Our son did not make much progress after these procedures. That was when - out of desperation - we begged Dr. K to try the "Saving Sammy" dose of XR for our son (1000 mg of XR twice daily). Only then did we see significant progress, which has continued steadily on that dose.

 

So - based on our son's painful experience - I don't believe 500 mg of augmentin once a day is sufficient to protect a PANDAS child, even in the wake of IVIG. And our son is only about 110 lbs. If your son is 158 lbs, then 500 mg daily seems way too low to me.

 

Just one opinion... but one formed after 3+ years of very painful experience. If you're spending the money on IVIG, I believe it's prudent to do everything possible to minimize the risk of subsequent infection!

 

 

 

 

Dr. K recommended going from 875 mg 2x a day to 500 mg in am only. Has anyone else tried this? Suggestions? Recommendations PLEASE. I am really nervous about doing this.

[Fixit]

hey dad.....can i ask.....

at this time.....are you still or do you know if you have anything going on

as in....high strep titers, low iga's, rising myco p

 

just that this sydrome is so crazy.....i dont think when our new blood work comes in it will show any infection....

we have a couple of pretty high autoimmune markers...and gut issues...which i think are getting better...

so i guess i'm asking if your son was still fighting strep, that might be why you need hd abx....if someoneslse had myco p..biaxin....

i wonder for amy s...if it was also just immune overdrive that needed to be settled...where as, your boy my still have a difficut time with strep, having it, fighitng it, excreteing it...you know what i mean...

[Joan Pandas Mom]

That is very interesting and makes sense to me.

 

I think this is where I remember reading about antibiotics and being given once a day vs twice a day. TMom, I've never been that knowledgable about antibiotics, just basic info. So, I don't have an answer on that. Sorry.

 

DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep.

 

Once daily Kelfex will not prevent strep....its half life is too short (about an hour). By 4-5 hours the Kelfex will be totally cleared out of her system. To my knowledge, Azithromycin (half life is 68 hours) is the only oral antibiotic that can be given once daily to effectively prevent strep.

IMO...once daily Keflex is just encouraging the strep to become resistant to that antibiotic.

 

Anyway, here's my question:

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

For us, Augmentin and a cephalosporin (stronger version of Kelfex) didn't work either, but Azith. did. But, I agree with the others that Clindamycin (possibly with rifampin) would be another good choice.

[Joan Pandas Mom]

My gut says you are right on. I'm going to ask/beg Dr. K. tomorrow to put him on that dose. My son is getting too old, and has had this too long to take any chances. I have great respect for Dr. K too, but I feel he might be wrong here with this lower dose, after all, Sammy got better on that dose alone without IVIG. I know that is rare, but it happens.

 

We have great respect for Dr. K, but I feel compelled to sound a warning here. Our son (just turned 14) has done 3 rounds of IVIG with Dr. K in Chicago. We, also, were placed on the "standard" prophylactic dose of augmentin (not XR): 500 mg, once per day. Bluntly put - it did not work for our son. He caught several more infections while on this dose, including one which triggered his 3rd and most severe PANDAS exacerbation ever.

 

Per Dr. K, we did 2 full rounds of IVIG (1.5 mg / kg over 2 days, repeated again after 28 days) last summer. Our son did not make much progress after these procedures. That was when - out of desperation - we begged Dr. K to try the "Saving Sammy" dose of XR for our son (1000 mg of XR twice daily). Only then did we see significant progress, which has continued steadily on that dose.

 

So - based on our son's painful experience - I don't believe 500 mg of augmentin once a day is sufficient to protect a PANDAS child, even in the wake of IVIG. And our son is only about 110 lbs. If your son is 158 lbs, then 500 mg daily seems way too low to me.

 

Just one opinion... but one formed after 3+ years of very painful experience. If you're spending the money on IVIG, I believe it's prudent to do everything possible to minimize the risk of subsequent infection!

 

 

Dr. K recommended going from 875 mg 2x a day to 500 mg in am only. Has anyone else tried this? Suggestions? Recommendations PLEASE. I am really nervous about doing this.

[Worried_Dad]

Good question! Dr. K did extend the XR prescription for us multiple times and never mentioned a specific "end date." But we now have a local doc prescribing this just for convenience (it's hard to get hold of Dr. K sometimes for a refill).

 

So we've been on the XR for 9 months now. Frankly, we're not even going to consider lowering the dose until the rest of the family's ASO titers come down (all are elevated), and Dr. K agreed via e-mail that this is critical for our PANDAS son's protection. Based on his e-mail comments, I think he's fully supportive of continuing the "Saving Sammy" dose until we're sure the rest of the family are cleared of strep.

 

I sure don't want to panic anybody, and Dr. K has been a lifesaver for so many PANDAS kids/families. It seems like this is an area where Dr. K is still assessing the data - I don't think he's certain at this point how much abx is necessary for how long, and maybe it varies widely from child to child, based on the situation?

 

 

Worried Dad

Are you then coming up to your year of antibiotics that Dr K does? Is he going to extend this longer for your son? I appreciate your post on this- as we have not seen anything "bad" happen yet since ivig just improvement, but at the same time we have asked Dr K to up antibiotic to see about improvement from tics and he has not done so at this time, but after reading this, it is that same sinking feeling of I do not want to wait until its reactive anymore but def learned to be proactive and esp since spending this kind of money that we would have a hard time doing again.