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Treatment plan


JJMom39

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Over the last week, since my son was diagnosed with PANDAS by his new pediatrician, I have been trying to read and research as much as possible. I now find myself in the weird position of knowing so much more than what I did when she diagnosed him, but feeling like I don't begin to know enough. I am troubled by one key aspect of her treatment plan, and I would greatly appreciate any feedback/thoughts. She treats for 5 days with Omnicef and that's it, unless more is needed. She also treats with Enhansa (curcumin) for the inflammation. The Enhansa is long-term. We are at the max dose of Enhansa--have been there for the last 3 days. My son finished the Omnicef on Monday. What is odd to me is that in all the things I have read, I have not seen anything about treating with abx for such a short time. I do know his ped. does not like the idea of long-term abx use--she thinks the inflammation needs to be addressed. I get that, but is 5 days long enough to kill anything off???

 

Some background: My son's first PANDAS episode was over 2 years ago after strep throat, but we did not know at the time it was PANDAS. He was diagnosed by the new ped. because she routinely checks strep titers and ANA levels in kids with a history of strep and certain symptoms. Just a few days before we got the diagnosis he started having anxiety at night and then for a few days he had some mini rage outbursts. It seems to me that something was kicking in and causing these symptoms. He had a mild cold at the time so maybe that was it, or maybe it was the staph infection in his finger the month prior, or maybe asymptomatic strep? Anyway, after he started the Omnicef he had a couple of days of tantrums and some very mild, short-lived tics. All those symptoms are gone, but now he is either hyper or in la-la land. And his inattention is soooo bad, worse than ever.

 

Last month when he was on abx for the infection in his finger he was taking Augmentin. He had some days when his inattention was really improved. I did not know at that time that he has PANDAS and thought that improvement was due to some new supplements I started around that time also. Given that he is not himself and that 5 days doesn't seem like long enough to kill much, it seems to me that he should be on abx for longer than 5 days. And there's the fact that there is strep in his school. Does that make sense?

 

 

And, I would like to ditch the Omnicef and try Augmentin since there was improvement in attention with that. For those who have used Augmentin and had good results, did you find any difference or benefit among regular Augmentin or Augmentin XR or Augmentin SR? I'm just trying to find the best approach, while walking the fine line between advocating for my child and not playing dr. at the same time! Thank you for any advice.

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So, you have a doctor that seems proactive in testing children for strep, but may lack in treatment. That's disappointing. I'm not sure how long Omnicef is prescribed for strep. 5 days does seems short. Could you just ask her to prescribe it longer, explaining how it is going around the school and you want to make sure his brain has a chance to heal before it is assaulted again? Agree with take the supplements she gives and tell her you will religiously give probiotics.

 

As for antibiotics, it seems that Augmentin and Zithromax are the two most successful on here, but success is not limited to those two. Some do take Omnicef and I know a couple that also use it prophylacticly. I believe that Omnicef is the antibiotic Dr Murphy used/uses in her study. Simply, no two kids are the same. What works for one may not work for another. It is possible you saw better results with Augmentin than you ever would with Omincef. Again, every child is different.

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Whenever my kids have been on omincef (usually for sinus) it's been for 10 days. I think one reason augmentin is widely used here is that it's amoxicillin with jet power- and amox is a broad specturm abx that works on a lot of different bacterias. I think omnicef is a little less general - works really really well on some bacterias and not as well on others. Amox is more of a shotgun - casts a wide net and takes out a lot of stuff. So we lobby for augmentin for the wide spectrum and the extra horsepower of clav. acid.

But it's these same properties that make some doctors averse to prescribing it long term. It's a big gun and they don't like to use a big gun every day. they want to save it in case they need it for a bigger infection.

 

Zithro is favored here because it's an intracellular abx that can get at infections that are hiding within host cells (sorry - this is not my area and I will screw it up if I try to explain any better). It's gentler on stomachs and only has to be taken once a day and is a much smaller pill.

 

So Augmentin and Zith are favorites. But it really depends on what infection you're fighting. My DS did reasonably well on augmentin for 18 months. It kept strep away and let him make progress. But since he also had lyme, it wasn't the right abx for that and didn't get us to 100%. So it's not so much a question of what is THE abx, but what are you fighting? If you don't know, then the broader spectrum abx are helpful. But it may require some trial and error. You may also challenge your doctor on this point - only partially treating an infection - say for only 5 days - is actually a greater risk for antibiotic resistance than taking abx for longer. If you expose bacteria to an abx but don't kill them all off, they learn to become resistant to that abx. So IMO, you're actually better/safer doing 3 weeks of something than you are doing just 5 days, provided that you don't skip or miss doses.

Edited by LLM
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I can't imagine trying to negotiate all of this without the wonderful advice and support found here, so thank you all again.

Vickie, very thought-provoking comment about our having a dr. who is proactive in testing but who might lack in treatment. We have been with her for only a month, and only one week of that has been with the PANDAS diagnosis so I really can't speak to her success or knowledge at this point. I am thinking about contacting the only other PANDAS -friendly dr. I am aware of in my state and see what her treatment approach is, or possibly one of the PANDAS experts, who are all out-of-state. But in the meantime I think my ds needs to have longer treatment so that is what I have requested. I am hoping to hear back from our dr. today about trying Augm and having a longer course of use. The 5 days on Omnicef did nothing for him, as far as I can tell. He's worse now than he was before starting it.

LLM, thank you for the reminder that finding out what infection(s) we are dealing with is key--I'm trying to wrap my head around the vast array of possibilities there, and I have your excellent list of tests to ask for so that is on my list for the dr. also. I did not know that only partially treating an infection is a greater risk for abx resistance than taking abx for longer so thank you for that info also.

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