medication refusal and MRSA questions

January 12, 2011

My 6 yo son has a PE tube in his right ear, it's been there for about 2 years

now. For the past 6 months or so it has been infected on and off. When it is

infected, it drains (a lot) of pus and fluid and smells absolutely foul. Then

it flares his eczema on that side of his face. Other than that, he has no fever

and not noticeable pain (he's nonverbal) though definitely this is irritating.

The first couple times, we just let it be and it took awhile but eventually it

cleared up. I felt the drainage was just the tube doing its job and other than

the skin irritation and that the school was freaking out- it wasn't a big deal.

The third time it was taking forever to heal so I broke down and gave him the

antibiotic drops- it still took quite some time to heal but eventually did. The

fourth time I took him to the ped so that they could culture the pus/fluid-

turns out it was MRSA. The only antibiotic that will kill this bug is super

strong and the taste is so terrible. I was extremely worried about giving this

antibiotic b/c my son has hx of yeast overgrowth, but my fear about this

bacteria so close to my son's brain won out. We gave the antibiotic but he

refused it- we tried EVERYTHING we could think of to mask it, hide it in, force

it down etc... He has severe food issues to begin with so we had limited

options for hiding it. When all was said and done, I bet we got about half of

it in. Now here we are again 6 weeks later, same story. Fluid/pus pouring out,

the school nurse keeps calling wanting permission to talk to his ENT, etc....

So we went to the dr, got a new script for a new version at a compounding

pharmacy that was only 2.5mL 2x/day. Still he will not take it. Now, he just

doesn't trust anything we give him and he's more adamant than ever about his

refusal. He's minimally verbal and not really reasonable- like I can't bribe

him, he wouldn't understand. There are so few foods/drinks that he will

actually put to his lips so I'm really at a loss. I have to admit, you can

smell this antibiotic from across the room- it's really terrible. If I cannot

get this med down him, the only other option is a 10 day IV antibiotic.

Needless to say, I'm wanting to avoid that!

The other things I haven't mentioned is that he has immune system deficiency,

which is probably why we are where we are. He has had a recent uptick in OCD

behaviors that makes me wonder if this is connected to the infection. Right now

his only supps are probiotics and multivit/min.

Thanks for any advice about this situation.

kristine

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