Exposure to strep? Or did the abx stop working?

[Kbossman1]

Well, we've had it rough for a couple of weeks. DD 7 pandas has been feeling great for 2 months since starting on Kelflex. She was 95% symptom free! After 2 long years of what seemed to be like one crazy exacerbation. Then our whole house got the flu....and I waited to see what would happen....nothing. I was so relieved. Then my youngest got strep/scarlet fever 2 weeks ago.....and things started coming back. Slowly....I reported to her dr (She is still on the Kelflex twice a day) that we were starting to see behaviors come back, did he think it was just exposure b/c her strep culture was negative. He agreed it was just being exposed to little brother and said give it a week.

On the side, our DD6 non pandas went pandas on us at the same time. It stated last month with an anxiety attack which we went to the ER for b/c she couldn't breathe. There was nothing after that until last week. I was called by her teacher twice, once because she fell asleep in class and seemed very depressed, then she had an emotional break down one night last week and sobbed in her bed for an hour. Then on thursday she crawled under her desk at school (she says b/c she thought everyone was laughing at her). We had bloodwork done monday and we are waiting for the results. This child had strep twice in December and possibly in January although the jan. test was negative.

Ok, so back to dd7 pandas child. Things are getting worse. I am wondering if she is still being exposed by someone in this house. I do suspect my dd4 may have strep and I'm taking her to the dr this morning. What if she doesn't have it?! Could this still be going on/ getting worse from being exposed 2 weeks ago? If so, how long could it last? What do we do about the Kelflex? Increase it? add something else? The dr actually suggested when she finishes next week, which would be 2.5 months on it, that we stop it....and I told him that would be a huge mistake and I really didn't want to do that! He did say he would call another dr and see if they suggested we keep her on it for a while longer.

It's really hard to lose your daughter....but to see her come back and then lose her again! I am very strong and I can guide both daughters through this if I have to.....but hoping that someone else has some wisdom to share about why this is back/ getting worse and how long it could stay? Thanks

[Worried_Dad]

You totally have our sympathies! We're experiencing a mild version of this right now. Our PANDAS ds has basically had no bumps or backslides for over a year, since we started the "Saving Sammy" dose of augmentin XR. Then the past few weeks, he's had some struggles: dizziness, fatigue, says his thoughts are "all jumbled, like somebody took the pages of a book and mixed them all up." Very mild stuff compared to the "dark days" pre-XR, but still concerning.

 

Our situation is similar to yours in that our youngest recently showed a dramatic spike in ASO titer despite no overt strep symptoms. (But, of course, NONE of our family have ever shown classic strep symptoms or positive throat cultures.) It's very hard for us to dismiss this as coincidence. Our PANDAS / LLMD agrees and has prescribed a month of clindamycin for our youngest as a result.

 

We're hoping that clearing our youngest will benefit our PANDAS ds. Buster has posted some awesome explanations of the science behind this, but as I understand it, PANDAS kids are basically "allergic to strep." So - in the same way that exposure to tiny amounts of peanut can cause a severe reaction in a child with a peanut allergy - exposure to strep from a friend, classmate, or family member can trigger a ramp-up in symptoms for a PANDAS child, even if he/she is on abx.

 

Hope I didn't butcher that. Maybe Buster or another of the scientific gurus on here will clarify!

[MomWithOCDSon]

Ok, so back to dd7 pandas child. Things are getting worse. I am wondering if she is still being exposed by someone in this house. I do suspect my dd4 may have strep and I'm taking her to the dr this morning. What if she doesn't have it?! Could this still be going on/ getting worse from being exposed 2 weeks ago? If so, how long could it last? What do we do about the Kelflex? Increase it? add something else? The dr actually suggested when she finishes next week, which would be 2.5 months on it, that we stop it....and I told him that would be a huge mistake and I really didn't want to do that! He did say he would call another dr and see if they suggested we keep her on it for a while longer.

It's really hard to lose your daughter....but to see her come back and then lose her again! I am very strong and I can guide both daughters through this if I have to.....but hoping that someone else has some wisdom to share about why this is back/ getting worse and how long it could stay? Thanks

 

From time to time over the last 18 months, we've seen increases in our DS's behaviors, too, in response to being exposed to something . . . strep by a classmate, or even the norovirus at home . . . even though he never "actively" gets the illness in a classic way. Our pediatrician told us that, even on full-strength antibiotics, his system may produce antibodies due to exposure, though he won't "get strep" in the classic sense because the antibiotics are protecting him. It's frustrating, because here you are doing your best to protect and continue with a protocol that can work so well, but your kid is still vulnerable!

 

For what it is worth, after a few rougher days in reaction to exposure, he usually regains any lost ground reasonably quickly and continues to move further along in recovery . . . so long as we keep him on the antibiotic. It's when we try to take him off the abx that he appears to regress and has a harder time bouncing back on the heels of being exposed to something, whether bacterial or viral.

 

I'm sure it varies from kid to kid and the general well-being of their immune system, but if you can, I would stick with the antibiotics for at least a while longer (through the winter?), and I think you'll see her bounce back.

[tpotter]

Have you tested you and your husband? Turns out that I was the "canary", as I had mycoP pneum, and had given it to everyone else. I would suggest that you test everyone in the house for strep and mycoP pneum.

[kimballot]

Have you tested you and your husband? Turns out that I was the "canary", as I had mycoP pneum, and had given it to everyone else. I would suggest that you test everyone in the house for strep and mycoP pneum.

 

I want to echo what TPotter and others have said. Recently, we had our PANDAS doc do an intake on everyone in the family. Found high mycoplasma in 2 of us. We went on azith for a month and we all feel better (I did not even realize how little I had been breathing since having a respiratory infection in October). Plus... PANDAS son is doing much better... fewer "bad" days and those are usually "bad" hours rather than complete bad days.

Edited February 16, 2011 by kimballot

[thereishope]

Something to remember is if someone is on antibiotics they can get a false negative strep test. So, it could be from exposure,especially if you think strep is still going around in the siblings, but you can also up or change your dd7's antibiotics in the event she did contract strep and is getting a false negative test result.

[PhillyPA]

My son's pediatrician told me that if a child is on antibiotic and is being tested for strep, there is a "stronger" test that they use to determine if strep is present. They have to let the lab know that the child is on an antibiotic so that this stronger test can be performed. My pediatrician office never does the rapid strep test. This isn't just for my kids, this is for all of their patients.

 

My one son, who was diagnosed early for pandas and treated quickly, gets pandas symptoms when he gets sick with both bacterial and viral infections. He is on an antibiotic and will be until his 20's. His pandas symptoms after exposure to illness last between 2-6 weeks. It seems as if the more time that goes by, the pandas symptoms after illness last less and less time. But again, he was treated early for pandas (within a month of symptoms) so his immune system did not have a long time to really crash and become chaotic.

[Kbossman1]

Have you tested you and your husband? Turns out that I was the "canary", as I had mycoP pneum, and had given it to everyone else. I would suggest that you test everyone in the house for strep and mycoP pneum.

 

I want to echo what TPotter and others have said. Recently, we had our PANDAS doc do an intake on everyone in the family. Found high mycoplasma in 2 of us. We went on azith for a month and we all feel better (I did not even realize how little I had been breathing since having a respiratory infection in October). Plus... PANDAS son is doing much better... fewer "bad" days and those are usually "bad" hours rather than complete bad days.

 

I went to the urgent care last night and got tested for strep.....it's not me. I wish it was so that I would have an answer.....but I don't have strep. Then I took the siblings into the dr this morning....and they were negative too. Now I don't know what to think. Maybe the Kelflex just stopped working? not sure....and unfortunately the dr wants to let her finish this months medicine next week...then wait a week and have her come back in for a strep test/ and bloodwork. I feel like we will be starting all over again....only this time with 2 children instead of 1!!!!!! Eeeekkkkkk!!!!!! I will make my husband go in a get tested next.....if no one has strep, then I guess it's safe to assume that she's having a full blown exacerbation due to the exposure 2 weeks ago.....and maybe we should try a different abx? Thank you for any input

[thereishope]

Did they run cultures on the kids as well? Both my son and my husband have gotten false negative rapids just to have the culture come back positive.

[amyjoy]

We need to write a PANDAS textbook.

[Kbossman1]

Did they run cultures on the kids as well? Both my son and my husband have gotten false negative rapids just to have the culture come back positive.

 

Yes, the dr is doing a culture too. We've had that happen a couple of times too, where the kids are negative, then they call 2 days later (of course after they've been to school and exposed everyone there too).