Here we go again????

[cindy w.]

Hi, it's me again...(Ihave the cat who tested positive for c.diff toxins...still waiting the 10-14 days off meds rule before retesting...I'll be sure to let you all know once completed.)Well, my 7 year old daughter has been pulsing on Vanco. Took 250 mg every other day for 2 weeks, then every 3rd day for the 3rd week and 4th week. Beginning week 5 (last Sunday, 4/8) we dropped her to 125 mg. and were planning to go to every 4th day. 2 days after dropping her to 125, she had a "suspicious" bm. Next day, no bm at all so I was hopeful. Next day wakes up with fever and sore throat..(my 9 year old son,as well) Take them both in and they both have strep!!! Just had it 6 weeks ago! Now my son is being treated and my daughter is not. You have a 10 day window to treat strep and to avoid the risk of rheumatic disease. In the midst of all this, my daughter had a "c.diffy" smelling diarrhea yesterday followed by a pure mucous stool.I sent off a culture and spent hours last night on the phone with GI, ID and my pediatrician. Now, we're faced with 2 issues...the strep and the possible return of c.diff. She was doing great on the pulse until we dropped her dose on Sunday. I sent off 2 specimens while pulsing, both negative. I know that's not totally accurate since she was on meds but it felt encouraging still. I hate to give her an antibiotic at this point for the strep. We drew some labs Thursday to look at her strep titres and try to determine whether this is an active infection requiring treatment or not. This coming Wednesday we will redraw convalescent titres to determine just that. My feeling is that this is an active strep infection and she will require an antibiotic. I feel so terrible having to have her have more blood tests. The doc agreed to giving her so Valium prior to the next blood draw because she is an absolute emotional wreck. I know a colonoscopy is near to determine if she may have an underlying issue...Crohn's, Ulcerative Colitis. The docs last night seemed to want me to hold off on increasing the Vanco now. They want me to use my judgement and if things begin looking bad, go ahead and give it, but the plan is to continue the pulse and give her Vanco tomorrow night (it will be 3 days from her last dose) I dread every time she uses the bathroom for fear of what it will be. I think I'm just getting worn down and feeling defeated by this whole thing. It's so frustrating because there are really no clear cut, established clinical guidelines. It's frightening to see your child have to suffer with this. Thanks so much for allowing me to vent here..glad you're there to listen. Cindy W.

[cindy w.]

Just to add, I remember Bobbie's 3 day rule and I'm trying to imagine that this could all work out ...thanks!

[Christina]

Wow. I'm so sorry that this is all going on. I understand how stressed you must be. It seems as though the Dr. has things under control which is a good thing. I certainly would continue with his/her plan.
As far as the strep goes, if your daughter isn't allergic to Penicillin then Pen.K would be a good choice for treatment. It is middle of the road but is safer than most antibiotics c-diff wise. When I had active c-diff I thought I had strep as well. My GI Dr. cultured my throat and sent me home w/ a script for Pen.K. We decided to stick it out and wait for the results rather than to just go ahead and take it. Luckily, my results were negative.

Please keep us posted and I hope things turn around for your daughter soon.

Christina

[Bobbie]

CindyW,
Agree with Christina. After my son (then 4) had C. diff. the only antibiotic he could tolerate for a long time was PenVK -- fairly narrow in spectrum. See FAQ-Antibiotics. Yrs. ago. docs. used to give penicillin shots -- don't know if they do anymore -- less absorption through the gut that way, but greater chance of penicillin reaction. Check with ped., GI, & pharmacist.

Wise decison to test again for strep -- no sore throat would be treated with antibiotics unless a culture is done first. "Quick" culture often incorrect - longer one more accurate. Blood work should also show something.

This is what it eventually happens with most chronic disease -- & sometimes I think C. diff. in particular -- the parent must make the ultimate decision because docs. "just don't know." Go by your "gut" feeling.

Has your daughter's doc. ever mentioned probiotics? I don't have a lot of faith in them but do take "just in case." One study showed Culturelle was more effective in children than adults. If she is not already seeing one, I'd take her to a ped. GI.

I will remember "the bathroom watch" -- with both my son & myself. Nervewracking!!!!

Good luck, Mom. Tough call! Hag in there.

[nikki0294]

Hi Cindy
Sounds like your doc is on top of things. We went through a recent situation with strep. My daughter, who's immune system is still not back to 100% following chemo, tested positive for strep w/rapdi test in ped. office. They put her on zithromax and after 14 days we were to retest again. They did the rapid test again and it was still positive, so now they put her on imoxicillin. After 48 hrs on this she had a huge rash and hives w/ swelling so they said she now has an allergy but wanted to put her on clindamycin. I took her to the ENT and he did a culture, sensitivity and told me if it tested positive we could use a special rinse that she would gargle with. I am not sure if was an antibiotic rinse but he said if the strep was coming from her throat it would clear it, but if it were coming from sinus or other area it would not. I told him we'd wait for results but in the meantime we started her on listerine washes and luckily her test came back negative. Maybe you could ask about the rinses?? Good luck!
Christine

[Sheila1]

Hi Cindy, I've been wondering how you all were doing. I just cannot imagine going through what you are going through...so stressful.

I don't have much to add to what Christine and Bobby already said, but did want to encourage that maybe, if your daughter is not in great pain or illness from the cdiff, she will be okay even with some of the cdiff odor....(praying she doesn't require any antibiotics that set her back). When I finished my last round of vanco, about 19 days after that I had a few days with some moderate pain and stool changed and the very obvious odor - and I did end up testing positive - but I never got real sick and the doc opted to try me on Questran by itself. So I was able to finish out the healing and getting rid of cdiff with only the binder (and probiotics) to help. I ended up staying on the Questran 2 mos. and tapered off (tried a sudden halt after 30 days and had symptoms within 2 days so went back on).

I don't know if they can give Questran to a 7 yr old (1/2 dose, 1/3 dose)?? She may also be well enough to go to a Xifaxan chaser instead of Vanco? Something to ask the doc anyway.

The biggest thing I wanted to encourage was - don't panic if she still has cdiff 'signs' but isn't too sick because she could very well overcome the rest of it on her own. It sounds like maybe this is be what your/her GI doc wants to see too. Lastly, a friend of mine had temprorary, moderate, symptoms every time she pulsed down to the next level, but after a couple/few days her system would level out and she'd be okay.

We'll keep our fingers crossed that things continue to progress and not regress! Thanks goodness you know so much about strep testing, etc. I wouldn't have had a clue.

[labgirl]

Just as a side note about the rapid strep test that was repeated in the office after 2 weeks... anyone who is tested again after finishing antibiotics 2 weeks later should NEVER have the rapid test done in the office- it will almost always be positive even if the strep is gone. The doctor should have done a throat culture . The package inserts on rapid strep tests state that any follow-up test should not be done within 6 weeks of a positive rapid test, but should be followed up with a throat culture.

[Bobbie]

Thx. labgirl,
Copied info. in FAQ-Infections. Didn't know that about quick strep tests.