Need to switch up ABX, Please help me!

[beeskneesmommy]

Hi: My 4 year old son had an acute episode last Sept. He responded to Augmentin, looked pretty good (after the initial 1st 8 wks) for a couple of months, then went down hill around Dec. Mid Jan., we started Cefdinir and it was like magic - he responded very well and had a long period of normalcy from about the end of Jan. to mid March. He was exposed to tons of bugs at preschool and unfortunately had bouts of PANDAS symptoms with various viruses. However, he bounced back pretty quickly after each one. But, at the start of May, he was exposed to Strep and although his titers do not show that he had it and they are, in fact down significantly, the whole month of May and up to the present has been pretty bad since he had a fever and sore throat on 5/6. He had an unusual sudden onset of PANDAS symptoms at the end of a great day last Sat. (literally came on in a matter of an hour), and he can't seem to recover. This looks more like a mini version of the acute episode that he had last Sept.

 

Anyway, we will be going to CHOP and I feel strongly that we need to switch up the ABX....to what? I have heard that Augmentin XR works better than the regular Augmentin, but the regular Augmentin clearly lost its effectiveness last Dec. His doc will not prescribe Azith. Please give me suggestions of what has worked for you, especially if you have a kiddo close to age 4-5. He is too young for a steroid burst, I think, and ABX may give us longer run of health.

 

Thank you! -Kath

Edited June 8, 2011 by Beeskneesmommy

[MomWithOCDSon]

Just curious . . . why won't his doc prescribe Azith? This does seem to be a successful abx for many, both as treatment and prophylactic.

 

Our DS responded well to regular Augmentin originally, also, but then he plateaued, even though he didn't actually backslide while still taking the Augmentin. After the first 30 days of that, though, we were able to convince our ped to prescribe Augmentin XR, and he's been taking that ever since . . . almost 2 years straight now.

 

We have occasionally tried to "downshift" again to regular Augmentin, but he never does as well on it as he does the XR. The only explanation I can come up with is that the XR is extended release, and that keeps the drug active in his system longer and more consistently.

[peglem]

Hi: My 4 year old son had an acute episode last Sept. He responded to Augmentin, looked pretty good (after the initial 1st 8 wks) for a couple of months, then went down hill around Dec. Mid Jan., we started Cefdinir and it was like magic - he responded very well and had a long period of normalcy from about the end of Jan. to mid March. He was exposed to tons of bugs at preschool and unfortunately had bouts of PANDAS symptoms with various viruses. However, he bounced back pretty quickly after each one. But, at the start of May, he was exposed to Strep and although his titers do not show that he had it and they are, in fact down significantly, the whole month of May and up to the present has been pretty bad since he had a fever and sore throat on 5/6. He had an unusual sudden onset of PANDAS symptoms at the end of a great day last Sat. (literally came on in a matter of an hour), and he can't seem to recover. This looks more like a mini version of the acute episode that he had last Sept.

 

Anyway, we will be going to CHOP and I feel strongly that we need to switch up the ABX....to what? I have heard that Augmentin XR works better than the regular Augmentin, but the regular Augmentin clearly lost its effectiveness last Dec. His doc will not prescribe Azith. Please give me suggestions of what has worked for you, especially if you have a kiddo close to age 4-5. He is too young for a steroid burst, I think, and ABX may give us longer run of health.

 

Thank you! -Kath

I'm curious as to why your doctor will not prescribe zith?

[beeskneesmommy]

I think that's the theory, as reg. Augmentin has a shorter half life. I was leaning toward asking for the XR as well. I think it's fair to say that my son "plateaud", rather than "backslid" by last Christmas, because there was extreme improvement from the acute episode in Sept. on Augmentin - he was very, very symptomatic at the start and up and down for 8 weeks following the acute episode.

 

I wish that we could get Azith because he took it for pneumonia last Oct. on top of the Augmentin (just the 5 day run) and I am sure that is what pushed him forward. When he had trouble again, we did it again about 1 month later, justifying it with a sinus infection. The same excellent result occurred, but did not last as it was just the typical 5 day run. The doc is concerned about liver damage. She is excellent, but conservative. We are seeing another doc (Bouboulis) at the end of July, but I don't want my son to "backslide" tremendously in the meantime, putting us back to square 1. I think his CHOP doc would agree to XR or another ABX, but not Azith. Perhaps it is against current protocol at CHOP.

 

Your experience of 2 years of success with your kiddo is impressive and exciting! Do you mind my asking how old he/she is? I am trying to match age with choice of ABX and I want to have all of my ducks in a row when I meet with the doc.

 

Thank you!

[beeskneesmommy]

Peglem - doc is concerned about causing liver damage, although my son is (aside from PANDAS) very physically healthy with no other concerns and the PANDAS is classic Strep related...

[smartyjones]

not sure if this will be helpful for you and is a little different than most -- but my ds was 4 and a half at onset and you said you were looking for similar age stories.

at the time, we thought ds had an allergy to penicillin. he'd had a reaction twice to abx -- later i discovered it was actually one to a penicillin and one to a cephalexin. however, i don't know abx so much and get confused with the generations, etc.

 

anyway, he had high titers and a positive culture. he was put on 5 days of azith and did horribly. all troublesome behaviors, some of which had gone, came back with a vengenance. we much later discovered lyme -- could have been a herx reaction or simply a reaction to azith, although he had been on it before w/o trouble. we switched peds and a month or so later, he was put on 30 days of keflex, without titer check or culture. sinus CT showed all 6 cavities infected. he had 100% remission in about 3 days. unfortunately, it didn't last. he relapsed about 30 days off abx. again, went back on but without such dramatic results.

 

good luck.

[LNN]

I don't believe the Augmentin XR will be any help to your 4 yo. Last August, when my son was 60#, he was put on XR. But due to his weight, he could only get 1,000 mg per day. So we had to split 1 XR tablet (which is quite large) in half and give 1/2 in the morning and 1/2 in the pm. But cutting the pill, we broke the time release coating. So he still got 1,000 mg of augmentin, but it was no different than taking regular augmentin in terms of time release. So the XR really only helps for those who weigh enough to take the full 2,000 mg/day (or 2 full pills).

 

I don't have an alternative to suggest, other than to say that when an abx stops working, and remissions become harder to sustain, it may be worth digging deeper and looking for a chronic infection (mycoplasma, a tick borne illness, MarCONS or other sinus infection...) rather than assume an episode is due to exposure. We wasted a year making this mistake. And you're pretty far out from the time you suspect exposure (early May?). Make sure you chart symptoms on a daily basis.

[MomWithOCDSon]

I think that's the theory, as reg. Augmentin has a shorter half life. I was leaning toward asking for the XR as well. I think it's fair to say that my son "plateaud", rather than "backslid" by last Christmas, because there was extreme improvement from the acute episode in Sept. on Augmentin - he was very, very symptomatic at the start and up and down for 8 weeks following the acute episode.

 

I wish that we could get Azith because he took it for pneumonia last Oct. on top of the Augmentin (just the 5 day run) and I am sure that is what pushed him forward. When he had trouble again, we did it again about 1 month later, justifying it with a sinus infection. The same excellent result occurred, but did not last as it was just the typical 5 day run. The doc is concerned about liver damage. She is excellent, but conservative. We are seeing another doc (Bouboulis) at the end of July, but I don't want my son to "backslide" tremendously in the meantime, putting us back to square 1. I think his CHOP doc would agree to XR or another ABX, but not Azith. Perhaps it is against current protocol at CHOP.

 

Your experience of 2 years of success with your kiddo is impressive and exciting! Do you mind my asking how old he/she is? I am trying to match age with choice of ABX and I want to have all of my ducks in a row when I meet with the doc.

 

Thank you!

My DS is now 14 and was 12 and 130 pounds when he first began the XR so LLM may be right; your DS may be too young and too small for the XR as it doesn't come in anything smaller than 1,000 mg. tablet. It is something to be aware of, meanwhile, that the actual ADULT treatment dose of XR is 2,000 mg. twice daily, as compared to the 1,000 mg. twice daily as prescribed for Sammy Maloney and a subsequent number of our PANDAS kids. So despite the high-appearing number/dosage, it is still effectively one-half the dosage an adult is prescribed for sinus infections and the like. I guess it would take a very knowledgable doctor, however, to truly discern an appropriate dosage for PANDAS purposes.

 

Meanwhile, if azith worked so well for you in the past, and there are many, many folks who's kids are taking azith regularly as a prophylactic without adverse side effects like liver damage, perhaps all your doctor needs is a little more information to that end? I don't know of any peer-reviewed papers specific to that topic, but perhaps someone else does. Or perhaps your doctor could be put in touch with one of the docs who regularly prescribe azith for PANDAS and be given some professional-to-professional consult on the topic?

 

Finally, as for possible liver damage, 1) it could be monitored, 2) as discussed repeatedly here, kids here on the forum who've been taking abx for extended periods still seem to be okay in this regard (though I know that's largely anecdotal and probably not capable of swaying a conservative physician), and 3) supplements such as NAC and milk thistle are liver-supporting and have been researched for reversing damage done to the liver by things like acetominephin overdose, etc. So you could add those to your son's regimen perhaps?

[philamom]

She will not change her mind on the zith, and she has been in touch with some of the PANDAS doctors. She feels it contributes to abx resistance in general.

 

My daughter once had remission of symptoms from duricef. Could be the the same family as Cefdinir though...not sure.

[airial95]

My son is 3 1/2 now, and we've done azith and cefdinir. He's improved significantly on both - but the improvement was different on each abx. On the azith, we had longer sustained improvement between outbursts, with just residual OCD hanging about. We could go over a week without a meltdown, even with the OCD - but when the meltdown finally happened - we had a rough couple of motrin filled days.

 

On the Cefdinir, we had significant imrpovement as well, but we had more freaquent tantrums, but there severity was far less than on the azith. So we didn't have the longer periods of "tranquility" we were seeing with the azith, but the severity of his symptoms, all the way around was better.

 

He was on the azith for 8 months (with a couple of small breaks for a day or two), and the cefdinir for 8 months - with a 5 week break between 90 day courses. He just finished a 90 day course and we're keeping him off abx again for a spell to see how he does...we are seeing some backsliding...but nothing severe - YET.

 

The reason we switched from azith to cefdinir is because he was catching strep while actively on the azith. A problem we rediscovered on this last course of cefdinir as well

[eljomom]

May be a silly question, but what the heck is MarCONS???

 

 

I don't believe the Augmentin XR will be any help to your 4 yo. Last August, when my son was 60#, he was put on XR. But due to his weight, he could only get 1,000 mg per day. So we had to split 1 XR tablet (which is quite large) in half and give 1/2 in the morning and 1/2 in the pm. But cutting the pill, we broke the time release coating. So he still got 1,000 mg of augmentin, but it was no different than taking regular augmentin in terms of time release. So the XR really only helps for those who weigh enough to take the full 2,000 mg/day (or 2 full pills).

 

I don't have an alternative to suggest, other than to say that when an abx stops working, and remissions become harder to sustain, it may be worth digging deeper and looking for a chronic infection (mycoplasma, a tick borne illness, MarCONS or other sinus infection...) rather than assume an episode is due to exposure. We wasted a year making this mistake. And you're pretty far out from the time you suspect exposure (early May?). Make sure you chart symptoms on a daily basis.

[LNN]

MARCONS stands for multiple antibiotic resistant coag neg staph. It's discussed a fair amount by Dr Shoemaker - a doctor who publishes a lot about lyme and mold issues. His book "Mold Warriors" discusses it and you can find some discussion on this thread: http://www.latitudes.org/forums/index.php?showtopic=13362

 

Not suggesting every kid has this or if it's found, it means you have lyme. Shoemaker feels that people with immune compromised or immune fatigued systems are most susceptible. Just one more evil thing that can lurk as a chronic infection...

[beeskneesmommy]

She will not change her mind on the zith, and she has been in touch with some of the PANDAS doctors. She feels it contributes to abx resistance in general.

 

My daughter once had remission of symptoms from duricef. Could be the the same family as Cefdinir though...not sure.

[beeskneesmommy]

Philamom, are you speaking of our doctor when you say this?

[philamom]

Philamom, are you speaking of our doctor when you say this?

Yes, we saw her in May 2009, and at the time she told me she disagreed with the doctors who are prescribing azith for PANDAS. Maybe it's changed??