Tuesday, March 30, 2010

Blood Work Results

After a horrible reaction to the super strong doses of antibiotics, Bryan and I decided to take Courtney off of them and call the doctor Monday. She was so sick. We just couldn't fathom giving her more when all of the blood work had been done and she may not even need the antibiotics. The infectious disease doctor is only in the office on Tuesdays, the rest of the time she works out of a hospital. Anyways, I called Monday and she happened to have a cancellation for today. Relief!

The blood work was in and things look good. Her immune system is good and intact. Her titers, however, showed lower than she would like. She said that they weren't "stellar". Basically, her body has a difficult time making antibodies to fight off some strains of the strep bacteria. So, the Pneumovax that she just had last week and the new Prevnar 13 she will need to take in a few weeks will help build those numbers. She will re-check her blood levels one month after she has the Prevnar vaccination. The culture of the drainage this time came out to be viral, not an infection. (This means we do not have to continue the two antibiotics that caused her to be so sick! Yahoo!) She feels that the drainage is part of Courtney's vicious cycle. Her eustachian tube doesn't function correctly which is why she has tubes so her ear will drain. In a non-implanted person this would not be an issue. Since there is a foreign object in her ear any drainage poses a threat. The hope is as she continues to grow her eustachian tube will develop and work correctly and will "grow out" of ear infections.

Of course, Courtney had drainage today and since she has had so many infections she is putting her in a prophylaxis for 6 months. In the meantime if we have any questions or continue to have ear infections to go back and see her. She is great!! I am keeping my fingers crossed that we can boost her immune system and that in 6 months we can stop all medications and be healthy!!! All her allergy testing came back negative except for cats!! Yep, she is allergic to cats! Thank goodness we don't have any pets, unless you count a fish!?

Tuesday, March 23, 2010

Plan of Action

After my last discouraging doctor's appointment, etc. I decided our best approach was to take action and make an appointment with an infectious disease doctor. In fact, the doctor we ended up seeing was a pediatric infectious disease doctor! Even better!

Two weeks ago this Thursday Courtney finished a 10 day round of augmentin and one week's worth of antibiotic drops. I was starting to either worry or hope, I am not sure which one, that her ear was going to be all cleared up and we weren't going to have any more problems. This would be good if it were really the end, but bad since we had the appointment scheduled with the doctor for today. Did the antibiotics really work? If it wasn't draining yet, would the doctor still take it seriously and move forward with an action plan? I just wanted a concrete plan.

I think with a little divine intervention, Courtney woke up this morning with drainage. I know this seems terrible that I wanted her to have drainage. It is kind of like that squeak in your car that you want fixed, but whenever you take your car in it doesn't do it! You want it to squeak, I wanted it to drain! And it did! So here is the plan!

We had blood work done today which wasn't easy, but she did it. Thankfully we did at Methodist Children's so they had tiny needles, yet it still took a stick in each arm to get enough blood for today. She has to go back again to do the rest because they are only allowed to take a certain amount of blood in one day. The bottom line is the doctor wants to check her immune system more thoroughly, boost it and find out why she can't clear up the infection completely.

To start off we are on two types of antibiotics for 14 days versus the normal 10. She is on a stronger dose of augmentin and rifampin. She did warn me, thank goodness, that rifampin will cause her tears, urine, snot, etc. to be orange so don't freak out! She is leaving drops to Dr. Not so Happy to prescribe tomorrow at our follow up from the ear infection that is already back! We will go back to her in two weeks to get all of our results and determine our next steps based on the results, etc.

In the meantime she ordered a regular ol' CBC which will basically measure the concentration of red blood cells, white blood cells and platelets in the blood. She also ordered autoimmune deficiency testing for subclasses Ig C, Ig E, Ig M, Ig I, Ig G, and Ig A. In addition to that she did the pneumococcal titers (14 serotypes). This will determine if Courtney fails to make an antibody response to any of the 14 serotypes. One of the tests we have to still do is the allergy RAST test which will determine if the drainage is allergy related and the infection is really a secondary infection. Apparently this test alone takes up the one day allotment that can be taken from Sassy Pants. After the blood draw, she got a dose of the pneumovax! The thought behind this was to boost her immune system and cover more types of pneumococcus. And last, but not least she ordered a streptococcus pneumoniae urine test. From my understanding this will test if streptococcus pneumoniae is in her urine, but I don't know at this point, why that is important! This by the way, has to be done on a non potty trained little girl and taken to San Antonio on ice within 4 hours after she goes. Okay Heavenly Father, a little more divine intervention might be needed here!! Timing this between the commute to school, work, doctors appointments and a non cooperative 2 year old should be interesting!!!

The only other thing she would like to do is to have her vaccinated with the newly FDA approved Prevnar 13. This was just approved February 24, 2010 and will cover 13 strains of bacteria versus the 7. Because Courtney had the other vaccine today she wants to wait for one month.

Okay, that was more medical talk than I know what to do with!! I feel really good about this plan and really good about this doctor! She wants a handle on this, wants to know why she continues to have these ear infections AND she has a plan!! I will keep you all posted!

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!