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Die, strep DIE! :(


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Many of you old-timers will remember my daughter's case from last winter, especially. We fought strep for 15 months and could not eradicate it... we tried it all, even IV antibiotics via a PICC - nothing was working. She continued to decline, having rages lasting 3 hours, followed by severe Sydenham's chorea - bilaterally lasting up to 30 min, followed by unconscious for another period of time.... usually 20-30 minutes. I had to call 911 for help five times in two weeks last December.

 

She was eventually hospitalized, many tests run and received her first of several high dose IVIG infusions in the Children's hospital at Christmas. We saw a dramatic change... the entire episodes dropped to about 20-30 minutes total. They still followed that same pattern, but less intense and a lot shorter.

 

She was on homebound the rest of the school year. We did FINALLY eradicate the strep in early summer with 2 weeks Clindamycin followed by 2 weeks Rifampin for 2 weeks, carefully monitoring liver function the entire time.

 

This fall, we are trying to send her back to school on a modified schedule with a late start... we all know what the obvious worry is here.

 

She's been having an increase in symptoms, including severe separation anxiety, emotional lability and suicidal ideations... this nightmare never seems to end for any length of time. Brought her to the Ped this am...

 

She tested positive for strep this morning. :(

 

She's back on the Clindamycin for 2 weeks... oh, how I hope this will get it the first time!!

 

Do kids with this sort of pattern ever really get past this? Do they ever really stop getting strep so often or at least not reacting to it with such a severe response? I wish we knew more about the prognosis for our children... we need so much more research!

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Denise,

I'm so sorry you've had to go through this. What a nightmare!

 

Please don't take this as any sort of suggestion about lyme - you're a smart woman and you know enough about how to pursue if you were so inclined. That's not why I'm posting. I was just struck that the abx that worked for you are ones that are often used for bartonella - and that made me wonder if you or your docs might consider a lyme-like treatment of combo abx this time around. Rifampin has a half life of 4 hrs, Clindamycin half life of 2-3 hrs. You could dose each in between each other kind of like you can dose motrin then tylenol every 3-4 hrs...(not sure how to fit probiotics in but sacc. boulardis might work for you even with abx). And/or a longer course of treatment?

 

I understand the liver concerns, but you can use milk thistle or other liver detox support to help. The RF risks would seem at least as high on the other side of the scale.

 

Again, not trying to push any sort of label. Only trying to help brainstorm. I can't imagine the fear of having to face your nightmare another time. Your family is in my thoughts.

Laura

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Do kids with this sort of pattern ever really get past this? Do they ever really stop getting strep so often or at least not reacting to it with such a severe response? I wish we knew more about the prognosis for our children... we need so much more research!

I am so sorry to hear things are getting worse again!

In our case, we've been passing strep around among ourselves for over three years now. We've all been on antibiotics, dissinfected everything, always changed toothbrushes, etc. I finally had my tonsils out. Still, some of my younger kids are getting it and not having the "typical" symptoms. I believe in our case Lyme is involved and that is why we cannot seem to kick it, no matter how many antibiotics we try.

But, THANK GOD, PANDAS ds is not reacting as severely as in the past. I think homeopathy is working for him. Or maybe it was the 2+ years on Augmentin, followed by combined antibiotics (as part of Lyme treatment). I guess I'll never know. But at some point we decided to stop Lyme/PANDAS treatment, as there where some symptoms left that were not going anywhere. Homeopathy is taking care of those.

I am hoping to slowly get everyone treated, as in our experience antibiotics do not provide a long term solution (well, unless we could put the whole family on hard-core abx for a long period of time?).

But I wish someone would take this seriously and find out what the heck is going on. It seems in our small town, strep is constantly going around. I know of several families (just within the homeschooling community, pretty small percentage of the population) affected by PANDAS, some with more than one child, and other families who are just dealing with recurrent strep infections. There must be a particular strain that is causing this, maybe one that is resistant to the commonly prescribed antibiotics? I know in the past they have isolated specific strains that are more likely to cause RF, it would make sense that we are dealing with the same scenario here.

A friend of mine suggested I contacted the state's health department. She actually called them herself! They were clueless of course but then called her back and referred to the NIH page... sigh!

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Thanks Laura & Mati's Mom. She has been tested several times for Lyme & related infections (and we just sent one more recently) umpteen times... always negative across the board.

 

In the area we live, apparently, they are finding it more resistant to antibiotics, which is why the heavier ones are being used for her.

 

Honestly, given the severity of what she endured in her first two severe exacerbations, with last winter being the absolute worst (intense episodes lasting up to four hours and I had to call 911 for help five times in two weeks), I'm feeling uneasy about this new positive strep test when her brain is not completely healed from the last exacerbation.

 

Further... my ex showed up at the Pediatrician appt yesterday. I live with her, am her mother and an RN and have been observing the following symptoms in her, so made appt to get to the bottom of why she is suddenly having suicidal thoughts again that we have not seen in months... perhaps there is an infection on board?

 

Child has headache, sore throat, nausea, red throat, looks "pasty" (docs words, not mine - but I agree) and has been having increase in symptoms: increased OCD, separation anxiety, and suicidal thoughts... rapid strep test is faint positive, but positive. Doc says it's like a faint positive pregnancy test - can't be a little bit pregnant, you either are or are not. Likewise, you either have strep or do not. Doc says she has strep throat. Ex says... let's run a culture and if that is negative, we can stop the antibiotics.

 

??!!! :blink::o:mellow::angry:

 

I don't suppose I need to tell you that did not go over well. I pulled him out in the hallway to discuss and suggested we let the doctor decide what she has and what she needs since neither of us has a medical license. He ultimately wound up apologizing to doctor, insisting he only wants to take care of "his daughter". I guess he read something on antibiotic resistance at some point and has now decided that she has taken too many abx in her young life and had too many tests (he also made an issue at the GI's office with that doc this week that he "does not want her to be a lab rat" and that we not do what doc said would be a 5 min endoscopy (10 min total sleep time), but try a round of Zantac, then wean her off... doc did not say wean her off - he said keep her on it if it helps; otherwise, we need to re-discuss endoscopy - I let that one go as it's only two more weeks to try the new med). While I have physical custody (he has visitation), we share legal custody, so this is a rough journey in that regard in trying to advocate for what she needs. There is more, but this isn't the place to discuss.

 

Diplomatic Pediatrician tries to discuss, then gives up and says, 'ok, we can run a strep culture'... I start asking if the rapid is positive and culture winds up negative, surely, we are not going to pull her off abx?!! His clear impression is that she has strep... said it explains the increase in symptoms, she presents clinically with it and in his mind, she has strep. But also comments that let's wait and see what the culture shows. I assume he's buying time to get my ex out of the room. <_<

 

Thanks for letting me vent. :wacko:

Edited by browneyesmom
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I can totally appreciate your frustration. It's a big obstacle to get an ex on board, because there's so much baggage beyond a medical crisis that's on the table. I didn't mean to make you feel you had to defend your position on lyme or bartonella. You've been here as long as I have and you're an active researcher. I was only imagining the horror of the suicidal thoughts and wanted to toss out a combo abx idea, not push another label.

 

Like it or not, our kids are lab rats. If doctors and science don't know what's wrong, but we know something's wrong, what are we supposed to do? Not try because we don't know what to call it? Rely on a drug to mask symptoms temporarily without also trying to kill a "little bit" of a bacteria? So I respectfully disagree with your ex, but then, that's why you're venting here. I hope you catch a break soon.

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Honestly, Laura... if I could get ex on board, I would try anything under the sun to help her heal! But, you probably know that already by now. No worries, you didn't offend. :)

 

I'm just so frustrated that he wants to stop an antibiotic that could very well prevent another extreme exacerbation and I can't for the life of me get my head around his rationale for doing so. I guess he missed the caveat that in some cases, the benefit outweighs the risk. Sigh....

 

Truly, this is the exact reason that we need more medical research. The funny thing was that giving them meds would be more "lab rat"; whereas doing a simple endoscopy would provide answers. He wants to look like he is her protector and seems to think he has to protect her from her mother and the doctors. Don't even get me started on why the opposite is actually true. :angry:

 

Yeah... it took all I had to "respectfully" disagree yesterday morning. <_<

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Her GI is thinking about a variety of things. One is Eosinophilic Esophagitis, one is H. Pylori and the other is that she has GERD. She has nausea pretty much constantly, acidic breath (this one has improved since we switched her from Prevacid to Protonix) difficulty swallowing, feels like something is stuck in her throat.

 

Why did your son have one done? What were the results if you don't mind me asking?

Edited by browneyesmom
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Her GI is thinking about a variety of things. One is Eosinophilic Esophagitis, one is H. Pylori and the other is that she has GERD. She has nausea pretty much constantly, acidic breath (this one has improved since we switched her from Prevacid to Protonix) difficulty swallowing, feels like something is stuck in her throat.

 

Why did your son have one done? What were the results if you don't mind me asking?

 

 

Sounds familiar. My son had one done because of "reflux" (which turned out not be be reflux....he would have reflux symptoms...regurgitating food in his mouth, etc...classic reflux stuff). He also had intermittent stomach pains, nausea,lump in throat, occasional constipation and some food sensitivities. A wonderful GI doc (I couldn't believe I found a mainstream doc at CHP that thinks outside the box...they are notorious for "not believing in PANDAS") ....was really interested in his PANDAS!(WOW) But, he wanted to rule out more serious things first. H.Pylori, EE, celiac, GERD, bacterias, etc...more stuff than I can think of right now. If anything was found...we would treat accordingly.....if he found general inflammation of the esophagus (indicating GERD)...we would treat with regular GERD meds. I was expecting some kind of allergic thing to be found...some Eosinophilic cells for sure...I thought. And, maybe some inflammation from the "GERD" Well...nothing. No inflammation (no GERD)....no EE, no H.pylori...no celiac (he did several biopsies looking for "stuff"..bacterias, etc.)...nothing. So, he is on no meds for his weird GI stuff. Why treat for GERD when it is not there? His stomach pains are gas, which I knew beforehand becaue I told the doc he would have brief pains and then pass gas or go to the bathroom right afterwards, and, viola...no pains anymore. So, this doc, and I, are convinced it is related to PANDAS......some kind of sensory phenomenon happening with his esophagus/stomach muscles that contract and push food up. An internal tic. It does wax and wane. Very strange, but, it makes sense now. So, no GERD...pains due to gas..nothing allergic (EE)...no h. pylori....regurgitation considered a tic and PANDAS related.....nausea (infrequent and not severe) ...may happen when he is hungry, anxious/nervous. So, even though we found nothing...I was glad we did it because we now know there is nothing that needs to be addressed and I can relax about it. I would have never been able to relax about it if we didn't have it done. Several PANDAS docs have stated that general, unspecified GI complaints are another common PANDAS symptom. (I think Dr. K states it on his site) I don't know how common it is...but, I have heard from several PANDAS Moms that have children with weird GI stuff.

Edited by P.Mom
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Her GI is thinking about a variety of things. One is Eosinophilic Esophagitis, one is H. Pylori and the other is that she has GERD. She has nausea pretty much constantly, acidic breath (this one has improved since we switched her from Prevacid to Protonix) difficulty swallowing, feels like something is stuck in her throat.

 

 

Ds8 has a very similar list of symptoms - frequent nausea, difficulty swallowing, frequent choking, heart burn. But what sticks out to me is "feels like something is stuck in her throat". Everyone in my family has had this complaint from time to time, myself included. It is a terrible feeling, and just won't go away no matter how often you swallow, or even when you eat or drink. We were tested for h.pylori and strep among other things. All negative. I keep wondering if there is an unidentified bacteria at play here. I don't really have anything to offer in this converstaion, just thinking out loud...

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I'm crossing my fingers that clindamycin helps.

 

It has been a good antibiotic for us. When my daughter tested positive for strep throat for the 4th time, she was put on 10 days of clindamycin at 300mg 3x/day -- 900mg total daily. She was 6yrs old and only about 42-43lbs.

 

It cleared the strep for her, and by day 10 we saw some good improvements. However, by 1 1/2 days after stopping it, she seemed to get much worse. Then she was put on her first pred taper (and 100mg azith daily)-- I think the clindamycin got the infection, but the pred stopped the inflammation and autoimmune response.

 

((hugs))

 

Good Luck.

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Very interesting that others are seeing this also, nut endoscopy shows nothing. Thx for the input!

 

She has had non-specific *lower* GI complaints with exacerbations for ages... I usually assume it is yeast and increase Mgmt of that.

 

I'll have to think on this more after some sleep.

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Very interesting that others are seeing this also, nut endoscopy shows nothing. Thx for the input!

 

She has had non-specific *lower* GI complaints with exacerbations for ages... I usually assume it is yeast and increase Mgmt of that.

 

I'll have to think on this more after some sleep.

We're another family that has an endoscope that showed nothing except slight inflammation from GERD. Normal eosinophils, neg for h. pylori. Told to give pepcid for the GERD and dyspepsia and come back in 6 mos.

 

I don't know if yeast would be the only culprit (tho we certainly try to guard against it with probiotics). To throw this out for your things to sleep on...

 

My daughter is the one with the GI issues (I generally post about my son). She would fit the Cunningham profile for Pandas (CamK 179, anti-lysogangliosides >1200) but negative strep titers, no known strep infections. She is indeterminate for lyme, clinically looks like bartonella but no labs to confirm. So we don't know what to call it, but we know she responds very quickly to abx - like from a 9 on the exorcist scale to a 3 within 24 hrs.

 

Because we see an LLMD, he was willing to use a combo abx treatment for her. We initially started with just zith but she hovered between 4-5 on the symptom charts and was losing weight because GI issues and fear of GERD kept her from eating. So we added bactrim - one of the abx used for bartonella. This took her down to a 2-3 on the scale. We've been able to ween her off of pepcid.

 

She is still struggling with mild OCD/intrusive thoughts and some lability and sound sensitivity. Most days are a 2-3 but we can't seem to get rid of it. My current theory is that she has a gut biofilm where bacteria are hiding out. In a biofilm life cycle, bacteria in the biofilm (which is probably comprised of a variety of viruses and bacteria - not just one kind), there comes a point where some bacteria emerge from the film to break out and reproduce, keeping a new generation of bacteria out there in the body and then to form new biofilm colonies. It's speculated in the autism community that biofilms are a big problem, particularly in the gut, contributing to dysbiosis and leaky gut. I think what we've been doing so far, with the abx, is keeping things at bay - the abx might be killing stuff when it emerges from the biofilm but isn't getting at whatever films are already there. This is an alternative explanation to why some Pandas kids can't seem to get off abx - maybe they have bacteria (strep or whatever) that's in biofilms.

 

Here's a general explanation with a good diagram about h pylori biofilms (don't know this doctor, not suggesting his protocol - I just liked the diagram and general discussion and the NIH statistics) http://www.advancedhealing.com/blog/2009/09/25/dr-ettingers-biofilm-protocol-for-lyme-and-gut-pathogens/

 

But until we do something to strip away the film and kill the exposed bacteria, we're not going to get to the root of the problem. The problem is that biofilms are often comprised of calcium, magnesium, lead, mercury and other toxic stuff. So when you attack a film, you need a plan to 1. kill the bacteria 2. handle the nasty metals that may be released and 3. handle the toxins that will be released by the die off of bacteria. This is my topic of conversation at our appt next week.

 

So I toss this out there just for you to consider or discuss with your doctor. It's a different way of looking at the problem.

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Browneyes-

 

My older daughter started her pandas journey (and was initially her main symptom) with stomach aches. She would complain of daily stomachaches, however there were no outward symptoms (gas, bloating, consitpation, diahreea, etc).

 

In the end, this is what we determined- these stomach aches were a "sensory" issue. She would complain when she was hungry, eating, and after she ate, or if she had to use the bathroom. OCD got wrapped around the sensitivity, labeling it stomach aches, and starting to cause her to avoid going out, eating out, etc.

 

All of this went away upon diagnosis and a month of steroids (with her other symptoms). This did not come back with subsequent episodes, however the ocd morphed into fear of getting sick or vomiting. She is better right now, however still gets a small moment of panic with stomach issues.

 

We did lots of GI testing, but stopped short of endoscopy. GI doc felt everything was fine.

 

I am not saying this is the issue, I didn't even read the whole thread- just wanted to shoot this out in case it made sense for you dd.

 

eileen

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