Good or bad experiences with Bactrim? Doc just prescribed for dd

[BeeRae22]

For those of you who recall, my dd started with pans symptoms in October. Primary symptoms are not eating and ocd. She's been on Zith and Augmentin, and her doctor just prescribed Bactrim because rifampin doesn't come in liquid. Interested in comments, suggestions? Side effects? It makes me so nervous, all if these abx. Anxious at the same time to try something new.

[BeeRae22]

She's also been raging again lately, and in the last few days displaying "air hunger" which is new for her..... Anyone?

[Mayzoo]

If you go to a compounding pharmacy, they can make rifampin in a liquid (suspension). We used to do it all the time. It does; however, stain like crazy anything you get it on.

 

Sorry, no experience with kiddo and bactrim.

[Hopeny]

My four year old had a life threatening reaction including fever of 105 and severe bubble boy level neutropenia. The emergency cardiologist we saw who figured out what was happening said she thinks it should be taken off the market. Please know that drug reactions to it may not be a rash but can be many other severe symptoms. I know llmds like to use it but I would really recommend having rifsmpin compounded. My local pharmacy did it and it was one of the only meds my dd liked the taste of. For a more healthful version lee silsby will compound it for you but I went with my local sugary blend

[Hrosenkrantz]

I know of one mom for whom Bactrim was a game changer, so don't want to dissuade you if that's what your kid needs.

 

The two times we did Bactrim were the biggest disaster we had ever seen in our two yrs of dealing w this. It was the only time we seriously contemplated bringing our kid to the emergency room.

 

One cld argue that this was a herx, but our kid did turn a corner once we stopped Bactrim and tried a different approach.

 

Fwiw, my non pandas kid was prescribed Bactrim at a walk in clinic for poisin ivy infection, and had a bad reaction as well.

[Mayzoo]

My four year old had a life threatening reaction including fever of 105 and severe bubble boy level neutropenia. The emergency cardiologist we saw who figured out what was happening said she thinks it should be taken off the market. Please know that drug reactions to it may not be a rash but can be many other severe symptoms. I know llmds like to use it but I would really recommend having rifsmpin compounded. My local pharmacy did it and it was one of the only meds my dd liked the taste of. For a more healthful version lee silsby will compound it for you but I went with my local sugary blend

 

I have not compounded in about 8 years, but I would imagine most compounding pharmacies have sugar substitute options now, and you should be able to request tolerable, but not super sweet. We took special requests like this and flavor preferences into consideration.

[rowingmom]

DD developed high liver enzyme levels and then an allergic reaction to Bactrim. All over urticaria; eye lids, scalp, everything. Our LLMD switched her to biaxin and we never had another problem with antibiotics. We used a biaxin/rifampin combo for bart with no problems other than whenever we would try to wean, DD would relapse.

 

Our first indication of infection with a babesia-like-organism was DD's air hunger herx (feeling of chest pressure, sighing, dry coughing - she had never experienced these symptoms before, even with malarone. They were completely new for us.) with CSA, a combination tincture of cryptolepis, sida and alchornea.

 

She had previously tested negative for B microti and B duncani through Igenex, so who knows what she has. CSA seems to be fixing the problem. We will be adding more herbs for babesia in the future.

Edited May 23, 2014 by rowingmom

[BeeRae22]

Well, she had her first dose about 5 hours ago, and no issues so far. I know that reactions can happen several days in, so here's hoping that it'll be okay. (Especially since she has a big dance rehersal and recital this weekend.... now that im thinking about that, maybe i shouldnt give her any more until Sunday, she would be devastated if her weekend was ruined!)

 

There aren't many pharmacies that do compounding that I can see (in CT) and even if I found one, I'd be willing to bet my insurance wouldn't cover it, and can only imagine the ordeal I'd have to go through to get it! we will try the Bactrim for awhile and see how that goes.

 

The air hunger hasn't been that frequent, but enough to where I've noticed it in the last few days.... Will keep my eye on it, but I try not to say too much to her or ask too many questions unless I think something is wrong-- don't want to put any ideas in her head to dwell on.