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Strep on abx- update


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My little one has recovered from strep (it appears) with clindamycin. She, so far, has had no pandas symptoms.

 

She was on daily treatment dose azith and augmentin when she contracted the strep.

 

Now, her older sister (pandas, too) has strep. She was on zith and rifampin while she contracted it. Now she is on clinda. She had a mild bump in 0cd/anxiety and was very fatigued Monday, and this morning, that is why I took her for the tests. Hoping, hoping, that she doesn't have a major symptom explosion.

 

Thankfully, we see our neurologist in 2 weeks.

 

So- this makes me wonder why bother with the antibiotics. It has not prevented them from getting strep, or from getting pandas symptoms due to other illnesses (h1N1, colds, etc). Would we be better off just being neurotically vigilant, and pouncing on any possible illness with antibiotics, and on any pandas flares with immediate steroids?

 

OR- is the reason they are (so far- fingers crossed- please don't be jinxing myself) not reacting pandas wise to the strep BECAUSE they are on so many antibiotics.

 

BTW- we have stopped EVERYTHING in younger daughter while she is on clinda- and she is no worse for wear (if anything she is better).

 

The universe is really screwing with me- I cannot get a grasp on this, and every time I think I am getting close, something like this happens to remind me- I know nothing, and the docs know less.

 

Sigh.

 

Eileen

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I would hope that if a child is on antibiotics when they contract strep, it may slow the replication down at least enough that the new antibiotic has less work to do and the strep can get erradicated faster. Would that even make sense? I also like to think that no one knows how many times the prophylactic has prevented infections, this is my same mind set as having t and a ....you never know how many it prevented.

 

Can you remind me, in the first one dx with strep this time, what made you bring her in suspecting strep?

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Hi Vickie!

 

The first daughter diagnosed with strep, had the typical strep symptoms. She was fatigued for two days, and then woke up with 102.5 fever and sore throat. (last time she had strep, the initial onset of pandas two years ago, she cultured positive, but had only behavior symptoms).

 

The older one was fatigued yesterday, and her anxiety was slightly increased (they are both still healing from December episode), so today I took her to the doc. She had a negative swab (quick and culture) on Thursday, today the quick was positive.

 

Neither has had recurrent, or multiple strep infections, and I do not believe erradicating the strep has been an issue in the past. So far, the little one has bounced back with the clinda, and is feeling great.

 

I know I can never know if the abx have prevented other illnesses, but my kids were never sickly before- both having an infection needing antibiotics about once every two years- which is now what we are averaging ON the antibiotics. Just makes me wonder if the antibiotics could do more harm than good. NOT making any rash decisions.

 

I am wondering if there is any scientific explanation- that might say they would tend to NOT have a pandas reaction, or have a lesser pandas reaction to strep, while on antibiotics, even if the strep was resistant to that antibiotic. THAT would be a reason to keep them on.

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I feel as defeated as you do with this whole antibiotic/prevenative mess.

We had a beautiful week 4 post HD-IVIG. DD6 insisted on going to school- I let her.

Throught the week, strep notices kept coming in about kids in her class out with strep.

Well, she was feeling so good, on 200mg daily of Azith. I let her keep going.

Boom! Friday night, and every hour thereafter: we are in full blown PANDAS- loss of body control, loss of verbal (the light swearing) up all night, intrusive thoughts...

She did not 'get' the strep, not the illness. But the exposure started the autoimmune crap all over again.

 

I am heartbroken. Looks like I am going to schedule another HD-IVIG, and pull her out of school for the rest of the year, keep her home summer, and get ready for 1st grade.

But how the heck am I suppose to keep her protected in 1st grade??

What antibiotic do I pick?

Because I can't keep doing IVIG.

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I feel as defeated as you do with this whole antibiotic/prevenative mess.

We had a beautiful week 4 post HD-IVIG. DD6 insisted on going to school- I let her.

Throught the week, strep notices kept coming in about kids in her class out with strep.

Well, she was feeling so good, on 200mg daily of Azith. I let her keep going.

Boom! Friday night, and every hour thereafter: we are in full blown PANDAS- loss of body control, loss of verbal (the light swearing) up all night, intrusive thoughts...

She did not 'get' the strep, not the illness. But the exposure started the autoimmune crap all over again.

 

I am heartbroken. Looks like I am going to schedule another HD-IVIG, and pull her out of school for the rest of the year, keep her home summer, and get ready for 1st grade.

But how the heck am I suppose to keep her protected in 1st grade??

What antibiotic do I pick?

Because I can't keep doing IVIG.

 

ETA: It is a painful learning curve as we go- but wow, if I had doubts creep in about PANDAS, even with a 175 CamK, I sure don't now :-(

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I'm just wondering all the exact same things myself! DS 8 was diagnosed a yr ago, responded well to antibiotics, recovered over several months to almost normal, then on prophylactic keflex, 3 times/week since then. Well his first flare-up of PANDAS since diagnosis was right before Spring break (he gets OCD, rages, sensory dysfunction off the charts and cough tic). Strep was rampant in the school, we upped his antibiotic to therapeutic dose, weathered the storm, went on Spring break and things settled down. PANDAS Dr said no need to swab throat since he's already on keflex, also absolutely no symptoms of sore throat, infection etc, nothing. Back after Spring break, everything OK, then BAM again, last week, tic back, rages etc, etc. Sure enough, the kid sitting next to him had strep last week! The letter always comes home too late for me to pull him from school! So now back to therapeutic dose for a couple more weeks. But all this leaves those same questions, what is the prophylactic dose of keflex really doing??? I think he's just reacting to the strep, not actually getting the infection, so does an antibiotic do anything for this??? But like you said, it's for sure correlated with strep, and very sudden, so without a doubt it's PANDAS in my mind!

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As many of you know I have been trying to get my boys of abx for quite some time b/c of the damage they have done to their guts (and not to mention the resistance issue, the prophylactic abx was not even preventing strep/pandas). I had a few ppl plant the seed of homeopathy with me and off I went b/c I had nothing to lose at that point.

 

You may remember my post a few weeks back: ds6 was exposed to strep by ds3 for 5 WEEKS! He was not on any antibiotics or herbs, only his homeopathic remedy which was selected by our homeopath based on his specific pandas symptoms. The remedy worked. This is the first time he has been exposed to strep by a family member and not either contracted the strep or had a severe pandas reaction to it. There were a few nights that he had some very mild symptoms: mild fears only at bedtime, mild baby talk and stomach aches. No OCD, no emotional lability, etc. He was his usual happy self. One night I actually added in a strep nosode just to be safe, and those mild symptoms left by the next day. Another time I did not give the strep nosode and the symptoms still left by the next day. Point is that the homeopathy prevented symptom flare better than any abx ever has. And I'm not joking you that his little brother literally sneezed in his face, drank from his cups, all while positive for strep for 5 straight weeks! Almost too good to be true!

 

I'm still dealing with a strep infection in my little one, 7 weeks later. He contracted the strep before we started his remedy. I am hoping that his remedy will prevent future infections like it did in my 6yo.

 

Just throwing that option out there (sorry if I already mentioned it in the last thread, honestly can't remember).

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Our pediatric infectious disease doctor said that azith was a great immune modulator but a poor prophylactic one to prevent strep. She recommended switching to the rheumatic protocol long term when his immune system finally calms down (we are doing really well 6 months post 3rd IVIG but plan to do two more this year to keep him here). It has been a year but I think she recommended a cephalosporin if he has been exposed or gets strep because there are very few resistant strains to this group.

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My little one has recovered from strep (it appears) with clindamycin. She, so far, has had no pandas symptoms.

 

She was on daily treatment dose azith and augmentin when she contracted the strep.

 

Now, her older sister (pandas, too) has strep. She was on zith and rifampin while she contracted it. Now she is on clinda. She had a mild bump in 0cd/anxiety and was very fatigued Monday, and this morning, that is why I took her for the tests. Hoping, hoping, that she doesn't have a major symptom explosion.

 

Thankfully, we see our neurologist in 2 weeks.

 

So- this makes me wonder why bother with the antibiotics. It has not prevented them from getting strep, or from getting pandas symptoms due to other illnesses (h1N1, colds, etc). Would we be better off just being neurotically vigilant, and pouncing on any possible illness with antibiotics, and on any pandas flares with immediate steroids?

 

OR- is the reason they are (so far- fingers crossed- please don't be jinxing myself) not reacting pandas wise to the strep BECAUSE they are on so many antibiotics.

 

BTW- we have stopped EVERYTHING in younger daughter while she is on clinda- and she is no worse for wear (if anything she is better).

 

The universe is really screwing with me- I cannot get a grasp on this, and every time I think I am getting close, something like this happens to remind me- I know nothing, and the docs know less.

 

Sigh.

 

Eileen

Well, this has happened to us too, and we did not see a full blown episode because thankfully, we caught it (it was an ear infection while on Augmentin). So I think antibiotics do help, even if you do get an infection, it does not cause the horrible symptoms it would otherwise.

 

Right after New Years we all got the stomach flu. The kids were miserable and unable to keep anything down, so they did not get antibiotics for a couple of days, and boy was it an eye opener... sometimes you don't realize what they do until you stop!

 

Hope the girls hold up ok!

 

Isabel

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