Strep after tonsillectomy

[missjo]

My 6 YO nonPANDAS child got strep middle of February, did 10 days antibiotics, seemed to get better, on the thirteenth day woke up with fever and sore throat. strep again, 10 days antibiotic, seemed better, 13th day woke up with fever sore throat, strep again, this continued until April 3 he had T&A. During this time I got strep, my husband got strep and PANDAS son was not doing well, he was never sick and had negative streps but PANDAS symptoms were there. We decided to treat myself, husband and the two younger kids with 10 days of antibiotics with Rifampin added to last four days to hopefully eradicate the strep in our house. Two days ago I took the 6YO and 3YO to get strep test just to make sure they were clear and they both tested positive. They both had colds and doc said throats were red but neither had a fever or had complained of sore throat. Both kids have had T&A the 3YO had hers done last summer and 6YO last month. The doctor was shocked and said she didnt even know what to do next. She put them both on omnicef for 10 days and hopefully we will figure out what to do before they finish this round.

 

Does anyone have any thought on what to do next?

 

My husband and I had negative rapids and are waiting on cultures o return.

 

We cannot get the PANDAS kid better until we get the strep out of this house.

we do not have a dog so that is not the culprit.

 

HELP!!!!!!!

[peglem]

Clindamycin usually clears my girl....temporarily!

[airial95]

I wish I could give you advice...but sadly all I can do is commiserate. Mine both had T&A late last year and we've had SIX positive streo infectiins since the beginning of the year (4 for my son, 2 fo my daughter) plus a myco infection (son). My daughter is back on abx for exposure (3 cases in the classromm next door that shares a restroom). She's flaring but cultured negative.

 

The longest my son has been able to be off abx since Jan 2010 was 1 time for 5 weeks, our average is 10 days off before he comes up positive again.

 

We've also had the while family tested/treated - including the dogs...so I feel for ya!!!

[Mayzoo]

It took almost 6 straight weeks of high dose zithromax to finally get a negative strep test on my daughter. Her hx looks like this:

 

01-05 asymptomatic + for strep--10 day amox

01-15 + for strep--10 days augmentin

01-24 + for strep--5 days zith

01-29 + for strep decided to try 30 days zith then restest.

02-29 - rapid and culture for strep continue zith still today for now

 

My efforts may not have helped at all but this is what I did during the 30 days in addition to abx: I was washing sheets every day for her, and every three days for us. Keeping all our toothbrushes in Listerine changed every day. I turned my dishwasher to hot wash and hot dry and used bleach in any hand washed dishes. I turned my washing machine to hot wash, warm rinse. I sprayed all light switches, door knobs, bathroom/kitchen surfaces, her bed and pillow (both vinyl covered), the couch, all counter tops, microwave-stove-oven-fridge surfaces, tv, vcr, dvd, computer mouses, keyboards, monitors, tv remotes etc with lysol every three days. I bought antibacterial soap for our hands during this also even though we do not normally use it.

 

I was adamant to get kiddo tested after every course of abx and a culture after the first negative rapid. The first time the staff thought I was a bit nuts, after that they agreed it was necessary. She was their first PANDAS case and they had never heard of PANDAS before this.

 

We home school so her repeat exposure is limited comparatively.

Edited May 13, 2012 by Mayzoo

[missjo]

thanks for everyones thoughts. The six YO and myself both did Clinda and Rifampin last round, my husband and 3YO did Augmentin and Rifampin(husband cant take mycin drugs and 3yo cant swallow pills so they took augmentin). We change toothbrushes after 48 hours of antibiotics and again at day 10. We have lysoled over and over. I really thought that the T&A would have knocked it out of 6YO at least for awhile. These are the antibiotics we tried for 6YO, Amoxicillin, Cefprosil(twice), Azithromycin, Clindamycin with Rifampin and now omnicef. I prefer not to go with Augmentin because Aug and Amox make him hyper, but I will go with Augmentin if I have too.

 

Is there a strain of strep that is antibiotic resistant?

 

Could all of the antibiotics we have been on cause us not to be able to eradicate it.

 

I had 30days of Clinda in January for nasal MRSA, February z pack for upper respiratory infection possibly strep but was not tested, April 10 days Augmentin for strep and end of April 10 days clinda and rifampin.

 

Husband 10 days augmentin and Rifampin in April for strep and late April-May 20 days of Avelox for ear infection.

 

PANDAS son stays on Clinda prophylactic

 

What would we even try next?

Edited May 13, 2012 by missjo

[mom24]

My 9yo PANDAS son just got strep on Clinda as well as increasing titers for myco plasma (although not technically + at this point---fingers crossed). Our Dr took him off and put him back on augmentin which I was told will treat his Lyme too (it was in a previous rotation of meds).

We have also had myco plasma in our 4yo that would not go away. Finally, bactrum and Clindamycin seemed to do the trick but it has been 3-4 months. As soon as we are done w/ strep here (3 out of 4 have it) I will ask that the little guy(who is not sick) get taken off the clindamycin. I have been hearing that (clinda) it is not good long term due to C Diff risk.

 

Good luck! Hopefully the warm summer weather will help. The kids seem to generally catch fewer viruses in the summer. I hope everyone feels better.

[Kimflow]

Mom 24,

 

So strep on clindamycin....did he tell you his throat was sore????

 

We have been through zpack, amoxicillin, keflex, augmentin, and all have failed at day 7...strep/PANDA symptoms came back.

 

Now have been on Clindamycin 10 days as well as immunomod. zithromax 250 mg. At day 7 again, the strep symptoms came back. PANDAS symptoms are flaring. I haven't had him swabbed because what else can we do? There aren't many other stronger antibiotics. There must be a reason why the strep continues to come back WHILE ON antibiotics that initially worked but then fail.

 

We are waiting on IVIG approval. Hopefully someone elses immunoglobulins with help. Tonsillectomy planned too. I know it is maybe only temporary help but atleast it removes one place the strep can hide.

Kim

[LNN]

I can't say that this is the only thing to consider, but you may want to talk to your doctor about biofilms. This is a long but fascinating article on the topic http://bacteriality.com/2008/05/26/biofilm/

 

Basically, bacteria can form colonies and build a protective wall of slime that's nearly impervious to abx. When the abx stop, the bacteria emerge from the bunker pretty unscathed. One treatment approach is to take something that weakens the biofilm and take abx at the same time. Mucus thinners are commonly used - NAC, nattokinase, some herbals I think - even mucinex works on the same principal. It sounds like the bacteria have found a way to hide from, rather than be resistant to - the abx.

[airial95]

One thing I haven't seen discussed on the forums lately that might be helpful to all the newer moms out there is the "sawtooth" nature of recovery, particularly with abx.

 

You likely should be giving any given abx longer than just 10 days before judging effectiveness. Most families have reported "sawtooth" recovery, which basically means that they see improvement, then a backslide, followed by improvement again...back and forth, hopefully with each backslide being less severe and each improvement gaining more ground - during recovery.

 

If you're seeing a flare of symptoms again after 7-10 days on an abx, it may not mean that it stopped working - it may just be the natural pattern of healing.

 

We used an excel spreadsheet to track my sons symptoms daily through the first 18 months or so and the sawtooth pattern was very clear. Just something to think about. In our case, the minimum we will do on any abx is 30 days initially before discussing its effectiveness.

[mom24]

Mom 24,

 

So strep on clindamycin....did he tell you his throat was sore????

 

We have been through zpack, amoxicillin, keflex, augmentin, and all have failed at day 7...strep/PANDA symptoms came back.

 

Now have been on Clindamycin 10 days as well as immunomod. zithromax 250 mg. At day 7 again, the strep symptoms came back. PANDAS symptoms are flaring. I haven't had him swabbed because what else can we do? There aren't many other stronger antibiotics. There must be a reason why the strep continues to come back WHILE ON antibiotics that initially worked but then fail.

 

We are waiting on IVIG approval. Hopefully someone elses immunoglobulins with help. Tonsillectomy planned too. I know it is maybe only temporary help but atleast it removes one place the strep can hide.

Kim

Hi Kimflow. DS had NO symptoms except for his behavioral symptoms that seem to happen when he has strep or myco plasma. If 2 of his siblings had not swabbed +, I would not have even taken him to the doctor. He was just supposed to be there for an allergy shot. I believe that is why the doctors keep rotating the meds. Hopefully since your son keeps getting sick this will help with your IVIG approval. Keep going to the Dr and let the Dr know that your child is sick.

I did think clinda was one of the best meds though (the "go to" drug according to two ENT's I know and respect. It is keeping my other son strep free (knock on wood). Hang in there!!

[Kimflow]

yep, I am pretty sure if I swabbed him right now, he would have strep. I will ask for this when I go to the Lyme doctor tomorrow.

 

I am certain though that either the zithromycin 250 mg a day is immunomodulating part of the PANDASresponse to the nondead strep and/or the antibiotic is still killing some strep, just not all as it may have been in the beginning. Who knows? Maybe could be that some strep could be coming out of biofilm for some reason and that is why we see downturn always at day 7. It is just one more burning question now to replace my prior burning question I always had.

 

I always use to say if someone would give me a dime for every time I have wondered why my son's lips were peeling off in sheets but not bleeding and it was always worse in the winter yet no chapstick would help I would be rich. Well, with the diagnosis of PANDAS and the commencement of antibiotics, the peeling lips are gone. So lips better but PANDAS now. Oh my! :-)

 

I did hear from one parent that they were on the same clindamycin then rifampin rotation and that the rifampin seemed to help the most, then steroids.

 

Kim

[Kimflow]

LLM,

I just read your post above MOM24. yes, I am seriously considering the biofilm theory. I am going to check out your link. I have previously done Usman's biofilm protocol for the gut bugs...it seemed to help....but honestly what helped gut status the most was immunomodulator. This was all before PANDAS. The inflammation that has come requires additional immunomodulation.........maybe it is time to try LDN. I am just not sure how this all fits in with the IVIG ang tonsillectomy picture.

 

I previously has not tried becasue there is a period of adjustment that some kids have with the LDN. but at this point, have to keep thinking of additional ways to immunomodulate.

 

Kim

[Kimflow]

Airial95,

thank you for the info. on sawtooth pattern. Our last rx for prescriptions were provided by Dr L, pandas doc. Three weeks of Clindamycin and then followed with 2 weeks of rifampin. Since the IVIG approval is still waiting on approval, then I will have to call in to find out what to do after the antibiotics are up after rifampin. I really don't want to be off antibiotics as I know how it is ON antibiotics. I will ask for 30 more days of some type of antibiotic. She wasn't totally thrilled with the Augmentin due to the clav. acid...and maybe because my son is small although it does seem like alot of PANDAS kids take augmentin.

Anyhow, rambling. Lots fo things to think about.

[airial95]

My son is 4, 45" tall and only 36 lbs and we switched it augmentin in november, but we used azith and then cefdinir for close to 2 uears prioe to augmentin.

 

I thought the sawtooth pattern (and indirectly suggesting logging symptoms daily - it was a HUGE help!) Was worth mentioning. Those of us who have been around a while sometimes forget to mention the simpler things that can help those new to the dx!