Indestructible Strep

[pixiesdaddy]

Brief recap:

-DD9 diagnosed with PANDAS in October of 2009.

-Worst symptoms were rage attacks, shoulder tic, separation anxiety

-IVIG administered in 10/2009.

-Tics disappeared nearly overnight.

-Rage attacks diminished and have nearly disappeared after 5-6 weeks.

 

Anyway, it's been around 7 months since IVIG.

 

On many levels, we couldn't be more pleased. Here's what we're struggling with though...

 

DD9 is STILL getting strep infections. And, as we're finding out, so is EVERYONE in the family (myself, wife, DD2). We all were positively cultured, all went on abx for two weeks, and though we haven't had a follow up culture, given how we're feeling physically, we're pretty sure we're all still positive.

 

DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep.

 

I was on Cefdinir (300 mg, 2x/day) for two weeks. Now not currently medicated.

 

Wife was on Zithromax (500 mg/day) she's anaphylactic to almost every abx) for 2 weeks and then started another 2 week course which she is currently on.

 

DD2 was on Cefdinir (1.5 ml, 2x day) and is now not currently medicated.

 

With DD9, we also are gluten free, refined sugar-free. We also do NRT (Nutritional Reponse Therapy).

 

Anyway, here's my question:

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

 

We can see DD9 being exacerbated (just increased emotional lability, difficulty focusing, fatigue), but we don't know what else to do for her. At this point, we're just trying to trust the abx and other interventions and stay the course. We cross our fingers that she hasn't exacerbated that badly yet, but we don't know day-to-day how she's going to be doing. We know that she has tended to go through seasonal ups and downs with strep and that this is historically the worst season for her.

 

Thoughts?

Pixiesdaddy

[Fixit]

Brief recap:

-DD9 diagnosed with PANDAS in October of 2009.

-Worst symptoms were rage attacks, shoulder tic, separation anxiety

-IVIG administered in 10/2009.

-Tics disappeared nearly overnight.

-Rage attacks diminished and have nearly disappeared after 5-6 weeks.

 

Anyway, it's been around 7 months since IVIG.

 

On many levels, we couldn't be more pleased. Here's what we're struggling with though...

 

DD9 is STILL getting strep infections. And, as we're finding out, so is EVERYONE in the family (myself, wife, DD2). We all were positively cultured, all went on abx for two weeks, and though we haven't had a follow up culture, given how we're feeling physically, we're pretty sure we're all still positive.

 

DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep.

 

I was on Cefdinir (300 mg, 2x/day) for two weeks. Now not currently medicated.

 

Wife was on Zithromax (500 mg/day) she's anaphylactic to almost every abx) for 2 weeks and then started another 2 week course which she is currently on.

 

DD2 was on Cefdinir (1.5 ml, 2x day) and is now not currently medicated.

 

With DD9, we also are gluten free, refined sugar-free. We also do NRT (Nutritional Reponse Therapy).

 

Anyway, here's my question:

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

 

We can see DD9 being exacerbated (just increased emotional lability, difficulty focusing, fatigue), but we don't know what else to do for her. At this point, we're just trying to trust the abx and other interventions and stay the course. We cross our fingers that she hasn't exacerbated that badly yet, but we don't know day-to-day how she's going to be doing. We know that she has tended to go through seasonal ups and downs with strep and that this is historically the worst season for her.

Thoughts?

Pixiesdaddy

 

that is what i was wondering.....this is usually a bad season for ds too!!!...things are pretty bad here right now(allergies exasperate it)

maybe you just have to ride out this first year post ivig...as it seems its not as bad as before....and if things don't get better by may, revisit a do over with doctor.....

 

how old was dd when tics started and how long till you received ivig.....

[pixiesdaddy]

DD9 was officially diganosed just this past October, but we (and Dr. K who treats her) are pretty confident she had untreated PANDAS since age three, so for six years she was untreated.

 

Her earliest symptom was unexplained, recurrent low-grade fever.

 

Tics were the last to appear and really only showed up when she turned eight years old.

 

In keeping with the turning-back-the-pages phenomenon, it seemed like DD's tics went away first. The fevers, which showed up first, have been the hardest to get rid of, and now that we're in one of the worst seasons for her (early fall is the other one), it's really been a problem.

 

That being said, we're holding our breaths. If the worst we get right now is a little bit of emotional upset, some fatigue, and inattention, and then we get better, we'll count ourselves very lucky.

 

PD

[Worried_Dad]

There was a parent on here who posted about her child's infectious disease doc using a combination of clindamycin and rifampin as an "eradication protocol" for persistent, chronic strep A. She said it worked well for them.

 

I believe I remember seeing an article somewhere that talked about using this combo for carriers as well. Might be worth asking about.

[Fixit]

THanks for the reply

HAPPY for you!!!

 

 

DD9 was officially diganosed just this past October, but we (and Dr. K who treats her) are pretty confident she had untreated PANDAS since age three, so for six years she was untreated.

 

Her earliest symptom was unexplained, recurrent low-grade fever.

 

Tics were the last to appear and really only showed up when she turned eight years old.

 

In keeping with the turning-back-the-pages phenomenon, it seemed like DD's tics went away first. The fevers, which showed up first, have been the hardest to get rid of, and now that we're in one of the worst seasons for her (early fall is the other one), it's really been a problem.

 

That being said, we're holding our breaths. If the worst we get right now is a little bit of emotional upset, some fatigue, and inattention, and then we get better, we'll count ourselves very lucky.

 

PD

[mama2alex]

I'm reading a book called "Cure Unknown" about Lyme Disease and the author mentions IV antibiotics, used by some docs for the tougher cases. Also, our friend who had Rheumatic Fever as a child was given IV antibiotics at first (then prophylactic antibiotics until he was 21). Might be worth asking your doctor about this.

[smartyjones]

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

 

We can see DD9 being exacerbated (just increased emotional lability, difficulty focusing, fatigue), but we don't know what else to do for her.

 

 

pixies daddy - i'm not trying to suggest this is also your situation, just telling you ours. i believed my son to be clear-cut strep induced pandas -- pretty classic behaviors - ODD, intense upset, inattentive behaviors (no tics), high titers, positive culture, 100% remittance with first abx - ~ march '09. after some time off the abx, he relapsed. he has continued basically in a state of non-crisis but not necessarily healthy with about a 8 week exacerbation with the flu in nov. i now believe he is more accurately pitands, with many infections at the root of the trouble.

 

we had a western blot last june that was totally non-reactive. he has no lyme symptoms that are not also cross-over pandas symptoms. we recently have gone to a new dr (referral from our current dr b/c i suggested investigating lyme again or to see why he didn't appear to be getting healthy). the new dr believes him to have lyme, toxoplasma gondii and cytomegalovirus.

 

we're 4 weeks into treatment for these issues. he had a ramp up about day 7 - which could be due to the new meds. he's back to his general baseline with probable less inappropriate upsets - he has an upset within 'normal' reaction and is getting over it rather quickly - less than 5 min. is this due to the treatment? it does seem to have occurred in the past few weeks, but i don't know.

 

i did discuss this testing issue with dr. t and he said that although you can always do more testing, it may show nothing helpful and can be expensive. - which i do see makes sense. had we not seen this particular dr, we most likely wouldn't have tested for those issues. leaves us in quite a quandry!

 

most lyme experts believe lyme makes it very hard for the body to kick other infections such as strep. have you considered there may be other infection(s) that are resulting in this trouble with strep?

 

good luck.

Edited April 13, 2010 by smartyjones

[sf_mom]

I'm with Worried Dad 'clindamycin and rifampin' to clear strep. You can google strep carrier state.

 

If it makes you feel any better.... Our son has been exposed to strep 6 times since the beginning of Feb. from his school environment and one major cold from the home environment. So, almost every other week there has been some exposure. I don't think people understand how prevalent strep can be. So, it could be same infection or possible new exposures. Anyway, our son response to exposures has become less and less as he recovers.

 

In our family, our entire household is on high dose probiotics, high dose B-12, bentonite clay and antibiotics except me (I'm not on antibiotics because my titers are normal) for the last two months. All three kids have CaM Kinase in PANDAS range and being treated as such. My husband titer's are also high: ASO 283, anti-DNAse-B 680 (Jan 2010), ASO 249, anti-DNAse-B 680 (March 2010). His titers are moving in the right direction 'kinda' and will continue to treat him until they are within normal range. He was on Augmentin XR and then Azithromycin.

 

So sorry to hear the strep has continued... I know your worry.

Edited April 13, 2010 by SF Mom

[wornoutmom]

We used clyndamycin after 7 recurrent strep throats were not eradicated with zith, amox or omnicef. It did the trick, but wefollowed it with T&A surgery as ds's tonsils were pittted from yhe infections and ENT thought bacteria was hiding in there still wating to regenerate.

[thereishope]

Well, you guys are the healthiest people I know so I know diet Isn't the problem! As others have mentioned some people have gone on more than one antibiotic. I know recently one boy who had a stubbon sinus infection lasted for quite awhile. Finally the combo of Zith and Augmentin got rid of it.

 

You don't think you guys can have more than one infection (not just strep)? That would also make it harder to eliminate the strep.

[bgbarnes]

We are new to the PANDAS diagnosis but have a feeling we have a pretty strong bug on my ds-since he was last diagnosed with strep while on 2 different antibiotics. I had a co-worker that was on IV antibiotic for a sinus infection that would not go away- it took a couple months but she got rid off it- so it is POSSIBLE!!!

Good Luck and keep us posted!

Brandy

[pixiesmommy]

I'm on my second course of Azith (I have one more day) and the rest of the family has finished two courses of Cefdinir and Pixie has been on the prophylactic Keflex (changed from Augmentin) for about a week. We all still have mild sore throats and nothing seems to have changed. I think I actually have a sinus infection now. We go back to the family dr tomorrow to see where we go from here.

 

In possible related news, Pixie had a huge meltdown tonight, but we think it was sensory. She washed during her bath with my MIL's soap and got out of the tub red and itchy. She's having these big skin-related reactions to soaps lately that are new. She freaked out for awhile, then calmed down, then freaked again and had a non-verbal period where she kicked her legs before bed. DH finally got her calmed down by giving her some water and letting her chew gum, but she refused to put on a shirt to sleep in. I'm curious what the morning will bring and hope it was just a passing sensory overload rather than a true exacerbation.

 

[EAMom]

DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep.

 

Once daily Kelfex will not prevent strep....its half life is too short (about an hour). By 4-5 hours the Kelfex will be totally cleared out of her system. To my knowledge, Azithromycin (half life is 68 hours) is the only oral antibiotic that can be given once daily to effectively prevent strep.

 

IMO...once daily Keflex is just encouraging the strep to become resistant to that antibiotic.

 

Anyway, here's my question:

How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it?

 

For us, Augmentin and a cephalosporin (stronger version of Kelfex) didn't work either, but Azith. did. But, I agree with the others that Clindamycin (possibly with rifampin) would be another good choice.

Edited April 21, 2010 by EAMom

[pixiesdaddy]

Hi,

 

We consulted with Dr. K today via e-mail about the itchy skin and sensory issues. The concern raised was an allergic reaction to the Keflex.

 

He said that the next antibiotic to try would be Zithromax. He is advocating 250 mg every OTHER day.

 

In your opinion, does this still leave a window of time within which she's not "covered"?

 

Pixiesdaddy

[peglem]

Hi,

 

We consulted with Dr. K today via e-mail about the itchy skin and sensory issues. The concern raised was an allergic reaction to the Keflex.

 

He said that the next antibiotic to try would be Zithromax. He is advocating 250 mg every OTHER day.

 

In your opinion, does this still leave a window of time within which she's not "covered"?

 

Pixiesdaddy

 

The only thing is, w/ zith, you need a loading dose to saturate the tissues- then maintain tissue saturation w/ the prophy dose.

Edited April 21, 2010 by peglem