Antibiotic Dosage

[mama2alex]

I posted on this a month or two ago, but wanted to reopen the discussion as this continues to bother me.

 

A friend of ours who had rheumatic fever as a child wrote the following in an email regarding our son's PANDAS:

"Strep is definitely one of those infections that can trigger a complex immune reaction that can eventually result in an auto-imune reaction. In my own experience with rheumatic fever, strep throat was the trigger. Further...as was beaten into my brain over and over again by my pediatricians throughout my childhood... the syndrome could easily reignite if I came down with strep again. The solution they developed was (1) I stay away from anyone possibly infected by strep and (2) I stay on large doses of penicillin every day until I was 21 years of age. Their prescription was simple but very strong: I was on IV antibiotics for weeks in the hospital; and, after I returned home, I was on 1.6 million units of Penn-Vee-K daily for 18 years.

 

Now... after the rheumatic episode I came down with a lot of illnesses (just like all the other kids), but none of them were strep infections. And - here is the important part- none of them triggered the autoimmune response regardless of their severity. The rheumatic response was SPECIFICALLY tied to strep infections. No other infection would trip the trigger."

 

I bolded "large does of Penicillin every day until I was 21" because the whole idea of "prophylactic" antibiotics continues to bother me. If they gave "large doses" for RF, why not for PANDAS. It's the same underlying cause - strep.

 

I plan to take this up with at least one doctor soon, but it's been so hard to find anyone in N. California who knows what they're talking about, I haven't had the discussion with a doctor yet.

 

I think someone posted recently that they saw dramatic improvement in symptoms after PEX AND being on IV antibiotics because of some complications. I thought this was very interesting.

 

Is there anyone on the forum who's on "large dose" antibiotics as opposed to the lower dose of "prophylactic" abs? Or has anyone had this discussion with a knowledgeable doctor? I'd appreciate any info you have. Also, has anyone found any articles/studies on this?

 

Thanks!

Jennifer

[peglem]

Worried dad is seeing a good response to a "Sammy" dose of augmentin, I think. And it seems like somebody else just recently. You make a good point and I'm going to look into this with my doc. My daughter is on zith, and her doctor worries about liver damage, but I'd be willing to switch to high dose augmentin (for a trial) if he feels its safer.

[momtocole1]

This is so great to see something written by someone that was no antibiotics for years and stayed free of strep infections because of it.

 

Yes my son is on a high dose of antibiotics. Augmentin 1000 mg. 2X per day.

 

We have been on that high dose for about 16 days. We saw remarkable improvement in his OCD symptoms literally overnight, which continued until we had to get some intense dental work (3 teeth pulled) last Wednesday. He went form shedding OCD behaviors on a daily basis to picking up some old and new ones. I am hoping that once the nitric oxcide (sp) is finally out of his system that we will continue to see him shed OCD behaviors. We are also concerned about strep getting into the areas where the teeth were pulled.

 

We see immunologist at UC Irvine on Wednesday and I cannot wait.

 

I hope this helps.

 

 

I posted on this a month or two ago, but wanted to reopen the discussion as this continues to bother me.

 

A friend of ours who had rheumatic fever as a child wrote the following in an email regarding our son's PANDAS:

"Strep is definitely one of those infections that can trigger a complex immune reaction that can eventually result in an auto-imune reaction. In my own experience with rheumatic fever, strep throat was the trigger. Further...as was beaten into my brain over and over again by my pediatricians throughout my childhood... the syndrome could easily reignite if I came down with strep again. The solution they developed was (1) I stay away from anyone possibly infected by strep and (2) I stay on large doses of penicillin every day until I was 21 years of age. Their prescription was simple but very strong: I was on IV antibiotics for weeks in the hospital; and, after I returned home, I was on 1.6 million units of Penn-Vee-K daily for 18 years.

 

Now... after the rheumatic episode I came down with a lot of illnesses (just like all the other kids), but none of them were strep infections. And - here is the important part- none of them triggered the autoimmune response regardless of their severity. The rheumatic response was SPECIFICALLY tied to strep infections. No other infection would trip the trigger."

 

I bolded "large does of Penicillin every day until I was 21" because the whole idea of "prophylactic" antibiotics continues to bother me. If they gave "large doses" for RF, why not for PANDAS. It's the same underlying cause - strep.

 

I plan to take this up with at least one doctor soon, but it's been so hard to find anyone in N. California who knows what they're talking about, I haven't had the discussion with a doctor yet.

 

I think someone posted recently that they saw dramatic improvement in symptoms after PEX AND being on IV antibiotics because of some complications. I thought this was very interesting.

 

Is there anyone on the forum who's on "large dose" antibiotics as opposed to the lower dose of "prophylactic" abs? Or has anyone had this discussion with a knowledgeable doctor? I'd appreciate any info you have. Also, has anyone found any articles/studies on this?

 

Thanks!

Jennifer

[sf_mom]

I too upped my son's antibiotic post IVIG due to several flu's in our household via his brother and sister. Each time the dose was lowered we noticed an increase in symptoms. On Oct 23rd we lowered the dose again and slowly began to see an increase in symptoms with the following: night waking, mood liability, minor infrequent TICs. As of yesterday, we upped his dose once again due confirmed exposure to strep in his class last Wednesday and I'll update in a few days to confirm if symptoms have subsided.