Strep still harboring in DD's body or re-exposed to strep?

[kmom]

DD on Augmentin and Zithromax (simultaneously since Sept 4th '10 per her neurologist after only 1 abx wasn't making enough gains...PANDAS resulted from stubborn strep in April '10 but in Sept her Myco P elevated to 1.16). On Sept. 30th visit to Dr. B. we agreed to schedule 1st IVIg and he decided to remove the Augmentin & only give her Zith. 4 days later DD ramps up with PANDAS symptoms--sore throat, stomach ache and nose congestion. Throat pinkish/red. Local DAN dr. does rapid strep test which is neg. Chucked it off to a cold, but Dr. B agreed to add back Zith. She gets prgressively better and goes back to school part time after 3 days home sick. She is even better after IVIg on Oct. 20 and 21. Has 2+ fantastic weeks post IVIg...well fantastic to us. Contamination OCD still present along with some other symptoms but tics are gone and she's just more relaxed, happy, completely old self at school Halloween party I attended, etc. 1 wk post IVIg Dr. B discussed yanking Zith. I reluctanly agreed...I have the internal battle in my head of "I hate her on 2 abx's but scared to change ANYTHING!" I decided to at least finish the rest of Zith on hand. for the next wk. Last dose of Zith was last Tues. Nov.2nd. By Thurs.(2 days later) some mood lability. By Sat. she was a mess...depressed, discontent, irritable, weepy, separation anxiety AND sore throat and stomach ache. Called Dr. B in a panic so he added Zith back into the equation. Sun. she had swollen puffy eyelids almost like a reaction???, dark circles under eyes, sore throat, stomach ache, and by late afternoon she had a 1-2 hr. full blown crying meltdown. Monday still sore throat and stomach ache. Throat is pinkish/red. Took her to DAN dr....neg. rapid strep. (should have asked for reg. culture) DAN Dr. believes taking her off Zith wasn't good and glad Dr. B. added it back in. Mon. night full blown meltdown again Things slowly getting better as week has progressed but still sore throat and stomach ache. She also says she feels like her throat is swollen for lack of a better word. (T&A in Apr thus not swollen tonsils.) She complains of reflux a bit. Could possile strep in gut be coming up with reflux or is that a ridiculous thought? Today she seems the best she's been all wk. but still home from school which when well, she really enjoys--great student, has friends, etc.

 

 

Mom's at support group last night reminded me that it's probably strep (not a viral inf.) and probably won't show up on rapid test and maybe not a reg. culture. So here's my question. Could it be that strep still harbors in body and she reinfected herself when off 1 of 2 abx for 4 days as I've seen these past 2 episodes? Was she rexposed when she was in school last week w/o Zith in her? Could it be Myco P causing re-exposure? I was thinking she was exposed to a viral inf. b/c when I asked Dr. B a while back if I should take her for strep cultures when she has a sore throat he said, "No, not right away b/c the abx should keep strep at bay. If strep lingers for 3 or more days then yes b/c maybe the abx is resistant." Then there's the other issue...I have felt a minore sore throat in the last week. I always wonder how I play a role in this since I had MAJOR strep issues growing up. Ok strep titers each time tested but Myco P IgM 4.64 in June and 4.74 in Sept. Dr's always say just means past inf. though. Anyone have any similar experiences any of this or have any advice? I feel I trust our docs but know parents have great insight to these issues.

[T_Mom]

Oh my goodness KMom--what a nightmare. (I can relate as right now we are spinning w/ various abx options, etc.) I know you know these details far better then anyone else, what strikes me is that as you say, "...2+ fantastic weeks post IVIg..." and that with the decrease in abx she flaired.

 

With the feeling of reflux and the sore throat -- we had the same in my older d this past month, and a terrible flair (still lingering on) a doc. suggested allergies causing the sore throat (?) as the strep culture and titers came back negative. I put my d (13, 125 lbs.) on one Zyrtec a day and it has helped. We also switched her more recently back to the abx which helped her so much for so long (from Azithro to Amox. again.) I think the Zyrtec made a big difference for her.

 

(--as an aside, have you had lyme testing done, gee, I hate to mention that--but with these ups and downs it seems prudent to rule it out as well. A reputable doc. suggested using the Lyme C6 ELISA which online looks to be preferable to the standard WB and likely available at your pediatrician.) ps-- w/ your sore throat, it is worth a full check as well. At this point I just ask for titers (why not!) and a full culture every time:)

Edited November 11, 2010 by T.Mom

[PhillyPA]

My son had a bad reaction to Zyrtec. Zyrtec can cause behavioral problems in kids. Some people are fine with it, others are not. Zyrtec seemed to make things a lot worse but it could have just been a coincidence.

[kmom]

Thanks T.Mom. Don't feel bad mentioning Lyme, as I have been on that hunt for a few weeks now. I mean I always knew it was a possibility but from the start this strep infected child from Jan-Apr. never had a rise in titers. I could have been knocked over by a feather when Dr. T told me the results after the first titer test. She and her brother's titers never rise. But we learned about their "specific sterp immune deficiency" from Dr. B after more testing and it all made sense. Dr. B had us do Igenex testing pre IVIg. At that Sept. 30th their Igenex "appeared" negative but as I have read more, I got suspicious. (recently talked about this on the Lyme forum as a newbie) Had heard a while back that bands 41 being positive didn't matter. Both kids are ++ for 41 and indeterminite for band 39. Oh and DD is also + for 58. Lyme board members say many LLMD's would think of that a positive result when you add in the symptoms. Can't get in w/ a top LLMD until Feb and on wait list for some others but ironically found a local one and so far he seems reputable (fingers crossed). We see him mid Dec. but there's a chance one child can fill a possible opening next week. I have decided my DD gets that spot since she's worse off.

 

Thx for allergy med idea. I stopped allergy meds after the change in season here b/c she seemed better but maybe that's adding to the mess here. She has bad allergies...esp since this started(also makes me suspicious of Lyme). The hardest part of all this are all the variables that get thrown into the mix and makes definitive answers so difficult. I need a PANDAS mood ring decoder!

 

Thx for the help and good luck to you guys!