Wednesday, March 3, 2010

Reaching Out

I haven't been the best blogger, and I don't know who all reads this, but I need help. This is our situation.

Courtney has chronic ear infections with drainage. We do countless rounds of oral antibiotics, and I think we have gone through at least a half dozen bottles of antibiotic drops. It will clear up and then within a few weeks to a month, at the most, it will begin draining again. It is always the right ear, we are on our second set of PE tubes and have done an adenoidectomy. We have ruled out a biofilm and an infected implant due to two cultures a year apart, but both came back with the pneumococcal bacteria.

This past week we went back to Dr.Not so Happy with Him Right Now and found out the recent culture showed pneumococcal bacteria. He prescribed oral antibiotics and drops and sent us back to our pediatrician - what? You are the ear doctor!! He said that he was not okay with the situation, but since the implant wasn't infected we needed to go to the pedi to explore blood work for an immune deficiency and possible discuss seeing an infectious disease doctor. So, I am at an ear "expert" and you are sending me to my pedi with a chronic ear infection!?

I was able to get in yesterday with our pedi, he was great, but obviously isn't familiar with everything with cochlear implants, etc. We did the blood work which came back normal and he said there isn't anything more he can do. What? What the heck am I supposed to do now!? I called our pedi ENT office for a 2nd opinion or something, but can't get in until April 26th!

Has anyone experienced chronic ear infections like this? There normally isn't fever, but always drainage with or without odor and turns tan or yellow or greenish. Should we try to get into an infectious disease doctor? Is it okay to just keep doing oral antibiotics and drops?

Any advice would be great!


Bill and Shelly said...

It might be a Cholesteatoma. My brother had this when he was a child and my mom was told by his doctor that he just had ear infections, he ended up needing surgery to correct this problem.

Here is what information I have about it, I am watching my kids because it tends to run in families. My cousin had one and it was not corrected and she lost her hearing.

A cholesteatoma is a skin growth that occurs in an abnormal location, the middle ear behind the ear drum. It is usually due to repeated infections which causes an ingrowth of the skin in the eardrum. Cholestreatoma often takes the form of a cyst or pouch whch sheds layers of old skin that build up inside the ear. Over time, the cholestreatoma increases in size and estroys the surrounding delicate bones of the middle ear. A cholesteatoma usually occurs because of poor eustachian tube function as well as infection in the middle ear. When the eustachian tubes work poorly, perhaps due to allergy, a cold or sinusitis, the air in the middle ear is absorbed by the body, and a partial vacuum results in the ear. The vacuum pressure sucks in a pouch or sac by stretching the eardrum, especially areas weakened by previous infections. This sac often becomes a cholesteatoma.
The symptoms are: Initially, the ear may drain, sometimes with a foul order. As the cholesteatoma pouch or sac enlarges, it can cause a full feeling or pressure in the ear, along with hearing loss. An ache behind or in the ear, especially at night, may cause significant discomfort. Dizziness, or muscle weakness on one side of the face( the side of the infected ear) can occur. Any, or all of these symptoms are good reasons to seek medical evaluation.

I am sorry that this is so long, but when you said that she had drainage with sometimes odor that caught my attention.

I hope you will be able to get some answers.


Lori said...

Our son had ear tubes put in March of '07 due to reoccuring ear infections. Things were great until March '09 when he woke with blood all over his pillow and in his ear. The ENT said his eardrum had spontaneoulsy burst, something that was supposedly rare..but two weeks later it happened in the other ear..this was followed by extreme horrible ear infections over and over for the next nine months...the dr who out the tubes in suggested another set of tubes (the old one were partially out and in the ear canal), another dr kept giving him the darn ear drops, finally I had enough- Dec 28th we had the tubes removed and the ear drum patched (other ear drum had healed)- he has since been ear infection free and has even been able to return to swimming- he was having inner ear rather than outer ear infections i guess:? We're hoping we've finally figured it out, but he seems happy and has stopped complaining about his ears...hope this helps

Mommy, Esq. said...

Call the pediatrician and make them call and get the first appointment on an emergency basis for the ENT - you shouldn't be waiting! I learned that when I needed to see a GI doctor with my daughter. I have no advice other than to push for appointments with as many specialists as possible.