Defeated.
That’s how I feel today.
I had really high hopes for Maddie’s Rheumatology appointment yesterday.
The doctor came in and asked about the big picture as to what Maddie’s basic problem was. I handed her a copy of the spreadsheet.
The spreadsheet consists of doctor visits, blood work, x-rays and surgeries. There are 185 entries.
Let me say that again
ONE HUNDRED EIGHTY FIVE.
185 SEPARATE ENTRIES.
That’s not a typo.
And this doesn’t include well-child visits! Nor is it every visit to a specialist.
Maddie is 10 years old. Do the math. This is not a “normal” child.
So we talk to the doctor and she starts brushing us off.
The merry-go-round music might as well as have started playing.
Maddie doesn’t fit a simple clinical diagnosis for her symptoms and her age.
I am used to this merry-go-round.
But it doesn’t make it any easier to take.
Thankfully, Doug was with us and started asking more questions and pushed the doctor a little. She initially wanted to send us on our way, but Doug was able to convince her that maybe she could wait for the results from blood work before she said Maddie was fine.
I can’t explain to someone who has not walked this road how difficult it is to hear doctors brush us off year after year. I would give anything for Maddie to feel good. To be well. But she is not. A “normal” child does not wake up in the morning after nine hours of quality sleep exhausted. EVERY SINGLE DAY. A well child doesn’t live in pain EVERY SINGLE DAY! It is hard to sit and listen to doctor’s explain away documented problems as if explaining it away will make it go away.
So here we are. Again.
We have some really good specialists that have improved Maddie’s quality of life significantly. The problem is that they are focused on their specific area. Yes, that’s what they are supposed to do. But in the mean time, we don’t have a specialist that looks at the whole picture. We thought we might get that with Rheumatology. I guess not. Doug explained to the Rheumatologist that we are tired of being pushed from one specialty to another. That we need a quarterback. We need a doctor to take ownership and to look beyond the textbook. In fact, half jokingly, Doug told the doctor to take good notes, that she might write Maddie’s case story one day.
So, where do we go from here? I don’t know. First, we wait for two weeks for blood work to get back. It’s hard. We want it to be good, but we also need something to show up so that maybe we can get a diagnosis of something.
Four years ago we were told it could take 10 years for a diagnosis. I guess we will learn to be patient. In the mean time.. if any of you out there know a student or doctor that loves research and interesting cases… let me know and I’ll send you Maddie’s case. I have done all the research I can with what I have. I’m in the market for some good (free) medical books!
And now I’m off to update Maddie’s spreadsheet with yesterday’s appointment details.
That’s how I feel today.
I had really high hopes for Maddie’s Rheumatology appointment yesterday.
The doctor came in and asked about the big picture as to what Maddie’s basic problem was. I handed her a copy of the spreadsheet.
The spreadsheet consists of doctor visits, blood work, x-rays and surgeries. There are 185 entries.
Let me say that again
ONE HUNDRED EIGHTY FIVE.
185 SEPARATE ENTRIES.
That’s not a typo.
And this doesn’t include well-child visits! Nor is it every visit to a specialist.
Maddie is 10 years old. Do the math. This is not a “normal” child.
So we talk to the doctor and she starts brushing us off.
The merry-go-round music might as well as have started playing.
Maddie doesn’t fit a simple clinical diagnosis for her symptoms and her age.
I am used to this merry-go-round.
But it doesn’t make it any easier to take.
Thankfully, Doug was with us and started asking more questions and pushed the doctor a little. She initially wanted to send us on our way, but Doug was able to convince her that maybe she could wait for the results from blood work before she said Maddie was fine.
I can’t explain to someone who has not walked this road how difficult it is to hear doctors brush us off year after year. I would give anything for Maddie to feel good. To be well. But she is not. A “normal” child does not wake up in the morning after nine hours of quality sleep exhausted. EVERY SINGLE DAY. A well child doesn’t live in pain EVERY SINGLE DAY! It is hard to sit and listen to doctor’s explain away documented problems as if explaining it away will make it go away.
So here we are. Again.
We have some really good specialists that have improved Maddie’s quality of life significantly. The problem is that they are focused on their specific area. Yes, that’s what they are supposed to do. But in the mean time, we don’t have a specialist that looks at the whole picture. We thought we might get that with Rheumatology. I guess not. Doug explained to the Rheumatologist that we are tired of being pushed from one specialty to another. That we need a quarterback. We need a doctor to take ownership and to look beyond the textbook. In fact, half jokingly, Doug told the doctor to take good notes, that she might write Maddie’s case story one day.
So, where do we go from here? I don’t know. First, we wait for two weeks for blood work to get back. It’s hard. We want it to be good, but we also need something to show up so that maybe we can get a diagnosis of something.
Four years ago we were told it could take 10 years for a diagnosis. I guess we will learn to be patient. In the mean time.. if any of you out there know a student or doctor that loves research and interesting cases… let me know and I’ll send you Maddie’s case. I have done all the research I can with what I have. I’m in the market for some good (free) medical books!
And now I’m off to update Maddie’s spreadsheet with yesterday’s appointment details.
Sorry to hear you hit a brick wall again! Frustrating, I'm sure. Well, as for our house, we are praying Maddie never ever gets diagnsosed with a yucky disease, that she will be healed from her symptoms, and that God will use her mightily.
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