Stubborn Strep...suggestions?

[Bridget]

I wrote recently about my 5 year old son’s eye movement tics ( positive strep). He was placed on 10d clindamycin and around day 10 his tics improved considerably. Of course they worsened again over the next few days. 4d after completing the clindamycin he tested positive for strep still. His physician gave him a bicilin injection. He again got better for a few days. I should note that when he is not on other treatment antibiotics he is on 200mg azithromycin daily + advil + probiotics and that in the past he has been able to clear a strep infection with clindamycin. We removed all other medications in case they were making tics worse.

 

His eye movements were really bad yesterday and his behaviors were pretty awful. They had to hold him down and pry open his mouth for the strep test. He wouldn't let the doctor or nurse go near him without physically attacking them for anything. He was attacking me continuously. He tested positive again for strep (1wk post bicilin). The pediatrician put him back on 10d clindamycin (after consulting with Dr. Alarcio). Seeing how that didn't work last time, I am not too hopeful.

 

I am just wondering what happens if they can’t clear the infection with these “standard protocols”?

 

I am so worried about my little guy right now. Any suggestions?

 

Thanks all! I know I don’t write often but you are all indispensable to me:)

 

Bridget

[Teri]

Does your son have a PANDAS/PANS dx? When my DD6 was initially diagnosed the Ped. Put her on 10 days of Azithromyacin on 10 days off for 30 days. As soon as she was off the abx the symptoms returned! Do you see a PANDAS doc? If you suspect that is what it is , I highly recommend you take your son to a PANDAS specialist as most Pediatricians are not adequately trained to treat it!

 

Just speaking from my own experience .... And we have a great Pediatrician who dx my daughter within weekes of her tic starting. She was very supportive but conservative with long term antibiotic treatment.

 

Hang in there !

Teri

[Bridget]

Teri-

 

Yes, our son does have a PANDAS diagnosis originally through Dr. K. and Dr. T last October. We now see Dr. Alarcio in Phoenix since we live in New Mexico. Our pediatrician here has been quite supportive and willing to consult readily with our PANDAS doc. Of course yesterday we had to see someone else who used the phrase "If we treat this". Although I am usually a VERY calm person, this got me pretty riled which is when she suggested repeating the clindamycin.

 

Our son has had success in the past with ABX treatment. He even had a month free of symptoms after a round of clindamycin last year and another good spell while on an augmentin/azith combination. Unfortunately since then he has been struggling with strep. Dr. T and Dr Alarcio ran a ton of blood work on him and found previous mycoP, high EBV and previous strep. We just can seem to get him out of this current flair/past this current infection. Perhaps it is a matter of going on a longer course of abx. We have an appointment with an ENT but the earliest available was at the end of June.

 

Bridget

[T_Anna]

Not sure if this is true, BUT I heard that Azithromycin can sometimes make the strep stronger and that Augmentin (penicillin) based is much better at fighting Strep.

 

Have you tried Augmentin XR?

 

T.Anna

DS15

[Missmom]

I agree with t. Anna, if your son is not allergic to pennecillin, then I would try augmentin. When my son was just a baby about 14 months old he was feverish and fussy so I took him in and he tested positive for strep. Our pediatrician put him on 10 days of amox. After ten days all his symptoms returned so I took him back. Positive strep again, tried azyth. for five days. Once again took him in tested positive again, so doctor gave him a shot of pennecillin and started him on augmentin. The doc finally sent off a culture and said that the strep cells were dead on the culture but registered positive on the rapid. (still not sure I believe that). Anyway, I believe after that month of resistant strep, that the pandas was triggered. I have no evidence, just speculation that it was never actually cleared.

 

After that episode we moved and switched doctors. Our new doctor actually admitted how much he liked antibiotics and was a big believer in just starting out with higher doses and clearing infections right away. When he was treating my son, he never had any pandas issues. That doctor later moved and after that whenever my son contacted strep he was only treated with the lower more conservative doses of antibiotics. That is when the pandas symptoms started to rear their ugly head. There is a lot to be said for catching things early and treating aggressively. I wonder if we had continued to be treated by our "good" doctor if we would have ever had to even deal with pandas.

 

Anyway, I suggest asking for a culture after each round of antibiotics just to make sure the strep is actually cleared. Good luck. I hope you find the correct antibiotic and the correct dose. Sorry you have to go through this.

[Bio and adopt]

my 7YO had strep last year from feb thru may

-10 days of antibiotics, he would seem better but on thirteenth day would wake up with fever and sore throat then would start another 10 days of antibiotics

 

- tonsils and adenoids removed in April only to test positive again two weeks after.

 

It took 30 days of Rifampin with 10 of those days on clindamycin to finally rid him of the strep.The entire family followed the same medicines we all started it at the same time. He has not tested positive since last May.

 

We had to have a compounding pharmacy make the rifampin into liquid.

[emst]

Our kids are with Dr. Nancy O'Hara and Dr. Gail Szakacs in Wilton CT for PANDAS, they have us try to increase antibiotics with a flare for example my son is in 2 tablets of Augmentin per day so if we sense a flare is starting we increase to 3 tablets per day for 5 days and we stay in touch with them, for our daughter who is well maintained on Zithromax she normally takes 250 mg per day but if we sense a flare we increase to 500 mg per day for 5 days and we stay in touch with the doctor.

Is he also on antifungals, they help.

Is he also on probiotics? Our kids are on 100 - 200 Billion, needs to be pretty high mostly in Bifido and Lactobacillus strains.

 

Having said all that however we get our worst OCD about 5 days after a flare.Dr. Bouboulis (Darein CT, where my kids get IVIG) says that the post viral OCD means the body is doing it's job, he says it's a healthy response which I have to say still drives us crazy sometimes, what we look for is whether our instances of OCD are getting shorter. OCD used to be 2-3 weeks long back before we started treatment, now OCD is usually just 4-5 days for my son, or sometimes for my daughter just 1 day.

 

Are you sure he has strep or is he reacting to other factors, a lot of kids are reacting to pollen allergens and to especially food right now, treating allergies and changing the diet even for a short time can lower the burden -- for example I need to be GF for tree pollen season otherwise I get wicked stomach aches so do my 2 PANDAS kids.

 

Interesting article about how berberine fights strep

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC175870/

 

Change his food, reduce sugar, epsom salt soak in the bath daily, reduce allergens in his home especially the bedding, sleep environment. Hope it helps.

[airial95]

My son had similar issues - except he would continue to test positive for strep while still on the abx. We were able to clear him up with a combination of Augmentin/Azith and Rifampin. Rifampin must be taken with another antibiotic (I forget why), but it's the only thing that cleared my son's strep. He's been on this combo since September - and hasn't had as positive strep test since (our longest stretch in 3+ years...knocking on some wood now).

 

My daughter, on the other hand, is going through the same thing right now. She always been a relatively "easy" case- clears quickly with antibiotic treatment (symptoms subside after about 2 weeks when treated with a 30 day course of abx). This time - it's just not clearing...was just back in for another culture yesterday (only did the lab culture - she wouldn't cooperate for the rapid). She has a penicillin allergy, so our abx options that have worked for my son become a bit more limited...

[JuliaFaith]

Bio-film busting may be something to look into. Ds drank rock rose tea (biopure) during most of his lyme treatment. to make sure treatment could work. It seemed to have worked very well amazingly enough.

 

Also, wondering how healthy sinuses and teeth (no silver fillings) are?

[AmySLP]

Did not have time to read all the responses...but I'd consider another course if clindamycin with rifampin.. My daughter had strep at age 4 for at least 6 months, while PANDAS set in.