My girl is now twelve years old and in the sixth grade. She was six years old and in the first grade when we first learned that she had food intolerances. I have spent six years trying to forget that wheat not only showed up as in intolerance on the test that was done in Florida, but also as an allergy on her allergy panel. I have spent six years trying to convince myself that, even if we did get her off, we would only see modest improvements in her health. She would still need all of her medication and the effort to get her off of wheat would be too tough for the modest improvements we would see.
Is there any truth to that? At all?! Who knows since it was made up in my head and repeated as if it were the truth. The real truth is that I haven't wanted to do the work. There - I said it. Now, this is what is running through my head and the mantra I want to hold on to, "My baby is sick and she is quite possibly sick because she is being poisoned by the food she's eating." Yes, that is closer to the truth.
Why now?
Valerie has now been diagnosed as a "poorly controlled asthmatic." Despite her regimen of maintenance drugs, she still endured four rounds of oral steroids last year and three thus far in 2010. That is a LOT of oral steroids - waaaaaaaay too much. Her last round was two weeks ago. She became sick on a Monday and started her regimen of oral steroids/antibiotics/aerosol treatments. That went on until the following Saturday. We went back to the doctor on the next Monday for a recheck and her lungs sounded just as bad as they did the previous Monday. Thankfully they did not put us on additional steroids but Valerie did start back on her aerosol treatments.
For more than a week now (since that 2nd Monday) I have monitored Valerie's health very closely. Closer than normal. Twice a day I check her O2 saturation, lung sounds, peak flow results, and watch her take every single one of her meds. We are charting the results for the doctor. This is the result of our diligence: Valerie nearly ALWAYS has audible wheezing and/or crackles. Over the course of nine days I heard her chest CLEAR twice. Two times. And both of those times she had to cough before she was clear. On the positive side, Valerie has been blowing green (GREAT!) on her peak flow meter and has felt very healthy for seven days. Blowing green, feels great, and still wheezing.
According to the plan set by the Nurse Practitioner, I stopped in the office yesterday and reported my findings. She just looked at me at first. And then she gave me her plan. Twenty one days (21!!!!!!!!) of antibiotics and then a CT scan of her sinuses to see if we have cleared the obvious congestion that must be living throughout her respiratory track. The fact that the wheezes are still there indicates that something is constricting the airways and if she's blowing green and feels good then it must be congestion that we have to be aggressive towards.
Great........another drug.
How many is that now? Seven. Valerie is on seven, yes I did say seven, daily meds. SEVEN!!!!!!!! Here me screaming? SEVEN!!!!!!! This would be number eight (8!8!8!) STOP ALREADY!!! When is enough - ENOUGH?!
Please hear me.....the practitioner's plan makes perfect sense, doesn't it? I see nothing wrong with her plan EXCEPT the part about putting more drugs into my kid. A drug that will wipe out all of her normal flora, cause GI distress, allow yeast to grow throughout her body, and mostly just reak havoc on everything - including the congestion in her lungs.
I have another idea.....let's fight what is CAUSING the congestion.
On the way home from the doc's office I stopped at the pharmacy to ensure that we keep that billion dollar industry going. (Insert eye roll here.) While Bear's Rx was being filled I nabbed Robin (the best pharmacist ever) and had a sit down with her. No one is more aware of Valerie's poly-pharmacutical state than Robin.
Robin, without any criticism of our health care providers (this is on the internet - want to make this clear), suggested that a change in diet might help in reducing some of this medicine. She spent a great deal of time with me and gave me names of resources to help us get started.
There is one thing that I'm sure of and that is that pulling this off feels like a full time job and I haven't even started yet. I know the work will be worth it and I must find the strength inside of me to commit to this for her.
We are scheduled to see pulmonary at Children's in December and Valerie has pulmonary function studies scheduled next month. I am taking back ownership of my daughter's health. First, I am not going to put her on that antibiotic, second I am weaning her off of one of her other meds, and lastly I am going to read a ton. I have to figure this out and I'm going to need help in doing so.
My goal right now is to take the entire family off of wheat in order to make this successful. My prayer to you, God, is that Scott feel the same passion and urgency that I feel for your daughter. Please give him the heart to understand the dangers of our current plan. In Jesus' name.
And everyone said......"Amen."
