Antibiotic question for newly diagnosed

[mom md]

My daughter 6, is a classic presentation. Four weeks ago she had sudden onset separation anxiety, OCD, a tic, and then strep confirmed by her pediatrician. Placed on a cephalosporin and symptoms decreased almost 80% by 7 days. We flew to see Dr. L after she had been on the antibiotic for three weeks and at that point her symptoms had decreased down to 10%. She once again confirmed the diagnosis and recommended a month of steroids to see if we could "erase" the memory of the immune system and also placed her on clindamycin for a month to kill staph. She said a lot of kids get infected with staph infections after the initial strep infection and flare again. We came home and a week later started the clinda. We are four days in and I can already see her OCD is getting worse. She was doing so well on cefdinir. I also have her on a good probiotic. I am very tempted to stop the clinda and go back to the cephalosporin. I have made an appoint with the infectious disease doctor her brothers see (they have PANDAS too) to discuss all this, but wanted to see if anyone had any thoughts or if they had see this happen.

[dcmom]

Hi Mommd- I always have thoughts

 

Have you started the steroids yet? I will assume you have not, for my answer, if you have my answer would be different.

 

I am slightly surprised Dr L wanted to change your protocol, since it was working- however, I applaud any doc for being more aggressive with pandas.

 

That said, our philosophy consists a lot of "do not rock the boat" and "follow what works".

 

So in other words, if your daughter was back to 90% on a cephalosporin protocol- my opinion would be to stay on that protocol as long as the results are 90%.

 

I am not sure why clinda would mess with her improvement, but if I were you, I would probably go back to the cephalosporin. I would let Dr L know things looked worse on the clinda, and you were trying a return to the ceph.

 

If at that point, your daughter starts returning to 90%- I WOULD DO NOTHING.

 

For us, 90% is a pretty good place, with time, healthy living and maybe some therapy, my kids can get to 100%.

 

Now, I will tell you that we have seen some things be a coincidence. In other words, right now it seems the clinda is causal to your dd's flare up, and it might be, but also be mentally prepared for the fact that that was coincidence, and she may continue to flare on the other protocol.

 

IMHO, I would go back to the cephalosporin protocol (I would probably immediately throw regular advil dosing for 5 days in to help settle things) for a week, and at the end of the week I would assess where you are. At that point you have to kind of go with your gut. If things are trending positively, stay the course. If not, think about starting the clinda in a few days again, and doing the whole course.

 

If you have started the steroids, I think I would stay the course. In our experience with steriods, they can cause difficulty sleeping and irritibility as a side effect. For someone with ocd, this makes things WAY worse, until the ocd starts decreasing. If you are on a taper, you should see the side effects (and therefore the apparent worsening of ocd) ease of as you taper down.

 

Hope this helps!!

[mom md]

Thanks for the thoughts. We did start the steroids and I knew from experience her behavior could get worse with the steroid I just did not expect the OCD to get get worse. I have always done what you said- if it is working stay the course. Strep is everywhere down here and it makes me really nervous to change her antibiotic, especially while on a steroid. I am going to go back on the cephalosporin and alert Dr. L. Thanks again.

[EAMom]

Thanks for the thoughts. We did start the steroids and I knew from experience her behavior could get worse with the steroid I just did not expect the OCD to get get worse. I have always done what you said- if it is working stay the course. Strep is everywhere down here and it makes me really nervous to change her antibiotic, especially while on a steroid. I am going to go back on the cephalosporin and alert Dr. L. Thanks again.

 

Yeah...too bad Dr. Latimer had you change 2 things at once (different antibioitic and also starting the steroid) since it makes it more difficult to see what is causing the decline.

 

My dd also had not so great response to being on steroids (increased irritability/aggression) but she was only on it for 5 days, then about 2 weeks later, her PANDAS symptoms would improve. When my husband was on steroids once for a lung problem, he got pretty weird and grouchy too...so steroids can have weird effects on anyone.

 

I agree with DCMOm about the Ibuprofen...but most docs won't want you to do steroids at the same time as ibuprofen. So, one approach might be to go back to the cephalosporin (no steroid/no clindamycin) with ibuprofen, and see where that gets you. Then try clindamycin again (w/out the steroids). Then once things are stable (and you can see clearly if things are better or worse on clindamycin), go back to the steroids (while either on clindamycin or cephalosporin).

Edited October 9, 2012 by EAMom

[dcmom]

agree with eamom- no ibuprofen with steroids.

 

Is it possible the ocd is not necessarily getting worse, but her reaction to it is worse because of the irritability the steroids create?

 

Might make me want to stay the course... clinda and steroids. See if things calm down when you start tapering.

 

What is the steroid dose?

 

My little one has a really hard time above 30 mg/ day orally (she is 50 lbs)- but we still do it. We just hang on for those few days (sometimes I start tapering earlier), and then we start to see real gains on the lower dose.

 

Clinda is treatment for strep carriers, we used it with both girls successfully when they contracted strep while on augmentin and zithromax.

[trggirl]

I have always found it odd, but like you describe, my dd reacts amazingly well with some antibiotics (Augmentin, Cefdinir) and goes downhill with some (Zithromax). I have always taken the position that I am going to give it three or four days and then I am not going to continue something that is making her worse. I don't know if that is the right or the wrong approach when you consider herxing and other meds in the mix but that is the approach I have taken. It just seems that if some antibiotics give immediate and dramatic relief within a day or two, why keep pushing one that is causing stress. :( Anyway, those are my thoughts. I wish I knew the right answers.

[HT's Mom]

My daughter 6, is a classic presentation. Four weeks ago she had sudden onset separation anxiety, OCD, a tic, and then strep confirmed by her pediatrician. Placed on a cephalosporin and symptoms decreased almost 80% by 7 days. We flew to see Dr. L after she had been on the antibiotic for three weeks and at that point her symptoms had decreased down to 10%. She once again confirmed the diagnosis and recommended a month of steroids to see if we could "erase" the memory of the immune system and also placed her on clindamycin for a month to kill staph. She said a lot of kids get infected with staph infections after the initial strep infection and flare again. We came home and a week later started the clinda. We are four days in and I can already see her OCD is getting worse. She was doing so well on cefdinir. I also have her on a good probiotic. I am very tempted to stop the clinda and go back to the cephalosporin. I have made an appoint with the infectious disease doctor her brothers see (they have PANDAS too) to discuss all this, but wanted to see if anyone had any thoughts or if they had see this happen.

 

Hi - did you contact the NIH to see if your child qualifies for the study? It may be too late if you ahve done steroids and other thigns, but it is worth checking. They need participants,and another child I sent to teh study is back to himself after treatment there.

[mom md]

I emailed Dr. Grant tonight to see if she would even be considered since she has already had steroids and antibiotics. She has also met with a child psychologist twice to talk to see if she had it and to see if she can start verbalizing her "rules. Don't know if that is considered behavioral therapy since it really hasn't done anything yet. I will see what he says. I really hate to subject her to the spinal tap,travel, etc when we can get IVIG locally but I feel like anything to further the cause. I will see what he says.