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How long has your child been on antibiotics?


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Sorry to keep asking, just trying to decide on whether to start daily antibiotics. If anyone does not mind answering how long has your child been on antibiotics? Do you use probiotics and what kind? Also, have you had any problems? If we start her doctor wants to test every 3 months to check her system (I think liver??) Do most doctors do this?

 

Also, most importantly, since starting has your child gotten sick or do you find your child has still gotten sick anyways?

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Our DS has been on antibiotics (either Augmentin XR or regular Augmentin) for just over 2 years now; we're currently tapering them with a plan to get off entirely in the next month or so.

 

We use probiotics daily: about 150 billion units in total, and a mix of all sorts of flora (sach boulardis, lactobillus and bifo)

 

As for liver function, his blood tests reveal no problems at all. Still, we're giving milk thistle daily, which is supposed to help keep the liver healthy.

 

Our pediatrician does not feel the need to test frequently . . . says there's no concern whatsoever. I would think, unless there's something with regard to your child or your family's medical history that suggests some potential for trouble in this regard, your doctor is just exercising an abundance of caution.

 

Our DS never really got classically "sick" before the abx so, no, he doesn't get sick while taking them, either. He's hyper-immune and has never even tested positive for strep (it wasn't until blood tests demonstrated astronomically high titers that we were able to get some PANDAS help), so he pretty much doesn't "catch" anything. Despite the abx, though, we do see some increases in behaviors when he's exposed to strep by a friend who's caught it, or a classmate, etc. The pediatrician says that, when exposed, his over-active immune system is probably going to mount antibodies, even though the abx prevent him from actively catching the infection.

 

Does that help at all?

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My DS 5 started Augmentin BID upon his 4th birthday Sept., 2010. He D/C'd that and immediately started Cefdinir Jan., 2011. He D/C'd that and immediatelt started Augmentin XR BID and Azithromax 1 x D July, 2011 and continues on this at present. he has recently had a full chem screen and his liver and everything else is fine. We will continue to test every 3 months. I give him chewable probiotics: "Yum Yum Dophulous" from Whole Foods daily, at least 2 hours apart from antibiotics. My son got Strep right thru the Augmentin, as evidenced by elevated titers after several months of taking it. He also got walking pneumonia w/Mycoplasma while on Augmentin. He did very well on Cefdinir but still caught his share of bugs, although not Strep and his titers went way down by late May 2011. He started the most recent protocol in July, and we are heading straight into flu/Strep season, so time will tell. So far so good. -Kath

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Sorry to keep asking, just trying to decide on whether to start daily antibiotics. If anyone does not mind answering how long has your child been on antibiotics? Do you use probiotics and what kind? Also, have you had any problems? If we start her doctor wants to test every 3 months to check her system (I think liver??) Do most doctors do this?

 

Also, most importantly, since starting has your child gotten sick or do you find your child has still gotten sick anyways?

Wow, like 7 years?! The 1st 2 years of that was only getting abx for + strep tests, but that was a lot since she tested + 3-5 days after finishing a course of abx. Then after T&A, we were off for a few months (very miserable), then started with prophylactic penVK...finally switched to zith (weird schedule-5 days on/7 days off) and for the last 2 years have been on 500mg of zith every other day.

She does still get sick sometimes. We use nystatin for yeast or diflucan tablets if she gets vaginal yeast. I do give probiotics kind of sporatically, both acidophyllus and boulardii. But when on zith we don't get much yeast-other abx, especially augmentin, causes bad vag. yeast.

 

Her doctor runs liver/kidney checks about every 6 months.

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When PANDAS first surfaced, we would only be able to get antibiotics when my child tested positive for strep. He did end up going into and maintaining remission even without a daily antibiotic. But, we are here now with 3 strep triggered exacerbations under our belt, residual OCD in the last one that we had to overcome and saw our young child think and do things that no one should see their child go through.Who knows how bad my child can get if he gets sick again. How do I know one more exacerbation will not be the one that broke the camel's back and I will be unable to get him back?

 

So, even though my child can maintain remission off antibiotics, we have finally found an understanding doctor that gives my child prophylatic antibiotics to try to prevent strep.My son has been on a prohylactic for about a year now. We do take a daily probiotic as well. To date, we have not had any issues. If strep is in the hosue,we do switch him to a different "family" of antibiotics for 10 days to try to protect him even more.

 

Over the last year alone, my non-PANDAS dd has had strep, we've had strep in the neighborhood twice, had people over to visit to find out they had strep while here, strep in the school....I am so happy and appreciative to the doctor that finally stepped forward and tried to protect my son.

Edited by Vickie
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DS 7.5yrs has been on abx for 12 months, ever since he was first diagnosed. Has been on continuously, although not w/ the same abx. He has taken Florastor, 2x day, every day, ever since. No problems w/ abx. He started on biaxin, after two months in which he did very well, was switched to azithromycin. Took that for a month, then took augmentin for 2 months, then back to azith. Took azith until he had IVIG in May, then started augmentin again. Been on augmentin since May. He was switched around when he was showing symptoms and flare up of PANDAS.

 

My DS has never had a positive culture or titer. He is rarely sick, like MomWithOCD reports in her son. In this past year, he had a stomach virus of throwing up, where he did not have any increased PANDAS symptoms and he had a fever in early August, after being exposed to a family whose kids had strep. He had increased symptoms and I increased his augmentin for 7 days.

 

We did IVIG because we he kept having flares on abx and while he was doing much better, he still had a ways to go in getting close to returning to the boy he was.

 

He went one full year untreated before finally being diagnosed.

 

He is not routinely tested to check blood values. His ped did a cbc w/ differential in July. He is being treated for PANDAS by Dr K, currently.

 

He was on treatment dose for 8 months. He's been on daily prophylactic dose for 4 months.

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DS9 has been on amox for almost 2.5yrs. Like others said, he reacts when there is strep nearby, but we don't change dose, just roll with it.

 

He's a mild case in general, now just gets a little more loopy than usual (adhd) with strep in the air. Doc said we can take him off anytime as his last titers were lower, but while we were reluctant to do long term abx, we are now reluctant to take him off! Oh irony.

 

He has shown little to no adverse side effects. We used to give him daily probiotics, but now he just has kefir a couple of times a week. No GI issues of note. He still gets tics but their intensity and length has been steadily decreasing, his anxiety is pretty much gone, no more sleep issues, no more 'just right' issues, even encopresis is mostly resolved. It's a good sign that I don't have a laundry list of symptoms to report and even struggle a little to recall them.

 

Prophylactic abx has been our only treatment and I think it has been so successful for us because we caught his PANDAS within days of initial onset.

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We did Azith full dose for 3 months, followed by proph dose from January 2010 through September 2010. He had postivie strep cultures 3 times while on the proph dose.

 

In September 2010, we did full strentgh cefdinir from September through December 2010, and then tried to take him off (per Dr. Murphy) for 6 weeks. After 5 weeks late off, he had a burst of symptoms and tested positive for strep again. He went back on 90 days of full strength cefdinir in February 2011 through early May 2011. In mid June, he tested positive again for strep, and went back on 90 days full strength cefdinir through mid August. Within 3 weeks off the cefdinir, in early september, he tested positive AGAIN for strep. He went back on 30 days full strength cefdinir (only 30 days b/c he had upcoming appts with the immunologist and Dr. Murphy and the pediatrician wanted to see if they wanted to change anything.). This time around, the cefdinir hasn't been working. He was just dropped to a slightly lower dose 2 weeks ago by Dr. Muprhy's office, and will be getting his tonsils and adnoids removed in 2 weeks. (They were going to switch his abx, but didn't want to prior to surgery). He'll have an IV abx drip during the surgery and will go on 30 days of full strength Augmentin after the surgery.

 

Aside from the 6-7 positive throat cultures, he has also had at least 3-4 impetigo infections (while on abx) as well as at least one sinus strep infection in the nose. Those were treated with topical abx (muciroprin and altabax) in addition to the oral he was already on.

 

We have had no gut issues, and they check liver function with every blood draw that they've done, but they haven't requested one so far specifically for that purpose. As for probiotics, all we use are active culture yogurts and good belly juices, and we've had no problems. We usually do them in the morning b/c most of his abx have been once a day anad we do them at night. This new dose is bi-daily, so we're having a hard time fitting them in without interfering.

 

We're hoping that after the Augmentin and the surgery, we will have cleared the infection that has been plaguging us for 2 years...here's to hoping!!

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Hi - my dd8 was on prophylactic abx for 1.5 years - diagnosis until she had a serious serum sickness reaction to augmentin. She also reacts to other triggers, so the proph abx did't stop her from getting other exacerbations (a total of a further 5 while on the abx). We found she actually did better when we came off but I can't attribute that to not being on them necessarily, could have just been coincidence.

 

She now just gets abx when she flares unless it is obvious it is a flare due to a virus.

 

Ds4 was only on proph abx for maybe 9 months to a year. He also now only gets abx when we see a flare - we've yet to pinpoint all his triggers but strep and flu definitely cause problems.

 

I think if I knew that my kids were just reacting to strep alone, I'd put them back on proph abx.

 

My dd never seems to get many issues with yeast but she did have slightly elevated liver test so we added in milth thistlle.

 

My ds is very yeasty and also had c-diff so we tend to be more cautious about backfilling with probiotics whne he does have abx.

 

We use Florastor. It is expensive but I think worth the extra $$ over generic.

 

Went to a new pharmacy and the guy that owns it saw the price on the bottle, already cheaper than anywhere else near us, and went "oh, that's too expensive, I'll drop the price" and took a further $10 off! I'll be going back :)

 

We also use Pharmax HLC as our good bacteria and get ds to drink kefir...

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DS13 has been on augmentin 875mg or azithromycin twice a day since Oct 2009. DD9 was on augmentin 500 mg twice a day since Oct 2010 and recently increased to 875 twice a day. They both take a probiotic before breakfast and right before bed. They have had no complications from the antibiotics. I do feel they have gotten sick less frequently. The only illnesses have been viral. DS onset of PANDASwas 2 years. Dd was 18 months so they both went a long time untreated.

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Dd started on 1440mg augmentin xr twice per day March 2010-May 2010. Changed to augmentin 875mg twice per day. Remains on augmentin 875mg twice per day to present. Have attempted to decrease to prophy dose but symptoms emerge. Dd has had breakthrough infection on 4 specific occasions. Dd has had 2 IVIgs. Dd refuses probiotics.

Mary

from Michigan

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