I just don't understand how this is even possible

[oivay]

my daughter had several bouts of debilitating chorea over the past year.

we tried abx and steroids bursts, which worked, until they didn't.

used zithro, clindamycin & prednisone, then again, which worked again.

couldn't use augmentin (allergy) .

then biaxin (severe diarrhea) and medrol. no change.

then tegretol...minor improvment, but side effects.

in the end, the only thing that got rid of the chorea/severe tics was PEX, which so far has made a world of difference.

through it all, strep titers never rose, even with raging strep infections (cultures).

[Mary M]

Peggy,

 

This is disturbing news. I am in Michigan where there was a recent news article about "invasive strep" in Kalamazoo and when my dh tried to locate the info he also found another article about "invasive strep" in Colorado Springs, CO. Is anyone else hearing about strep cases in their local areas that seem more potent? Our ped confirmed that in her practice they are seeing higher rates of strep than other years and cases that will not remit with regular abx treatment.

 

 

Mary

from Michigan

[peglem]

The clindamycin seems to be bringing about slow improvements. The chorea is not gone, but she is beginning to use her hands again and mood is greatly improved. We'll get her checked for strep again 2 days after finishing the course of clinda. But I'm worried about what we should do for prophylaxis. Wish I could get me some of that PEX!

[thereishope]

In my area, I have read that there is more strep and flu than usual, but I haven't read about any invasive strep or hard to treat strep in my area (knock on wood). When I read that same Michigan story, I searched for any current strep stories in my area.I do know that the flu hit later in the season than usual and that plays a role in strep hitting hard now too. Flu and strep often go hand in hand.

 

Glad to hear you're seeing improvements, Peg!

 

 

Peggy,

 

This is disturbing news. I am in Michigan where there was a recent news article about "invasive strep" in Kalamazoo and when my dh tried to locate the info he also found another article about "invasive strep" in Colorado Springs, CO. Is anyone else hearing about strep cases in their local areas that seem more potent? Our ped confirmed that in her practice they are seeing higher rates of strep than other years and cases that will not remit with regular abx treatment.

 

 

Mary

from Michigan

Edited March 22, 2011 by Vickie

[peglem]

Allie finished her clindamycin on Thursday. Took her in for FU strep test. She's positive on the rapid, was put on augmentin, and sample was sent for sensitivity testing. Her chorea is a little better but she's having problems with bladder control. Nighttime wetting has always been an early sign of strep, but she's never had daytime problems like this. Urine sample came up clean for infection.

Edited March 26, 2011 by peglem

[Kayanne]

Allie finished her clindamycin on Thursday. Took her in for FU strep test. She's positive on the rapid, was put on Amox, and sample was sent for sensitivity testing. Her chorea is a little better but she's having problems with bladder control. Nighttime wetting has always been an early sign of strep, but she's never had daytime problems like this. Urine sample came up clean for infection.

Wow!!

 

I'm keeping you guys in my prayers ((hugs))!

[peglem]

Allie finished her clindamycin on Thursday. Took her in for FU strep test. She's positive on the rapid, was put on Amox, and sample was sent for sensitivity testing. Her chorea is a little better but she's having problems with bladder control. Nighttime wetting has always been an early sign of strep, but she's never had daytime problems like this. Urine sample came up clean for infection.

Wow!!

 

I'm keeping you guys in my prayers ((hugs))!

Thanks! Hope she doesn't develop the prayer-resistant strain of GABHS!

[matis_mom]

Allie finished her clindamycin on Thursday. Took her in for FU strep test. She's positive on the rapid, was put on augmentin, and sample was sent for sensitivity testing. Her chorea is a little better but she's having problems with bladder control. Nighttime wetting has always been an early sign of strep, but she's never had daytime problems like this. Urine sample came up clean for infection.

Wow, so not even Clindamycin is doing the trick??? At least they set a sample for sensitivity, maybe that will be the key to unlock this medical mystery!

[hawks]

Don't really have anything to add. Just wanted you to know that I've been praying regularly for your daughter. I really hope you find some answers for her soon. Hugs & Prayers!!!

[peglem]

Don't really have anything to add. Just wanted you to know that I've been praying regularly for your daughter. I really hope you find some answers for her soon. Hugs & Prayers!!!

Thanks. That means a lot to me.

[EAMom]

Ditto wow! I'm so amazed that Clindamycin didn't work.

 

I know in the past you've done rifampin with Augmentin. Are you doing just Augmentin this time?

[peglem]

Ditto wow! I'm so amazed that Clindamycin didn't work.

 

I know in the past you've done rifampin with Augmentin. Are you doing just Augmentin this time?

Yeah, just augmentin. I don't think its working...uber bed wetting last night. Saturday, when we had the strep test done-only nurse practitioners are in. Her pediatrician has suffered a good deal of grief w/in his office over the rifampin, so I didn't bring it up. But, he called me last night (from home, while cooking dinner for his kids) and we'll regroup after her rheumy appointment Thursday. He said he wondered what the ID docs would think of this situation, and I said they'll probably just say she's a carrier, so don't treat it. He said that's BS (only he didn't abbreviate), that he thinks she's colonized under her skin and he thinks that's why the rifampin works for her. So, we maybe headed for more rifampin, but one step at a time, I guess. She does seem to be slowly, slowly improving, or at least not getting worse. I'm wondering about diabetes insipidus right now- she's drinking a lot of water, and has been having some problems with daytime leakage before she can make it to the toilet.

[JAG10]

I wish there was an emoticon that was red with steam coming out its ears cause that's how frustrating it is to have our babies beat up by a microbe!!!

 

We will pray it, Peg. Community prayer is so powerful and we are a community. We will all pray it tonight and our children will pray too.

 

Hang in there, Mom.

[peglem]

I wish there was an emoticon that was red with steam coming out its ears cause that's how frustrating it is to have our babies beat up by a microbe!!!

 

We will pray it, Peg. Community prayer is so powerful and we are a community. We will all pray it tonight and our children will pray too.

 

Hang in there, Mom.

Thank you so much. I sometimes seriously wonder if demons can take the form of bacteria and what's really needed here is exorcism! I haven't acted on that thought in all these years, but every time it gets bad like this...the thought occurs to me.