Take a minute to think about you eat on a daily basis. This is not meant as a guilt thing.. just think about your favorite meals. your go to, every day staple meals.
Now consider what you would do if you were told that the very things you were eating every. single. day. were making you sick.
Yeah.
This is what Maddie faced this week.
If you have been around here for anytime, you know that my Maddie girl has health issues. She is a fighter and has been for 16 years. We see more specialists than well, I don't know, but a lot. And NOTHING works.
Maddie has been poked, prodded, pulled, pushed and pinched more times than we can count. Every time we feel like maybe, just maybe we can figure out SOMETHING! And pretty much every. single. time. we are given a no. I'm not saying I want a yes to some horrible disease. No thank you. But I invite you into the world of watching your child live with chronic disease and pain for 16 years and not be just a little bitter.
So let me get you up to speed. Maddie has pretty much been sick since August 25th... the first week of this school year. She has gotten almost well and then has gotten sick. I would say she has been functioning at 60% to 75% of her best for at least the last 6 months. During this time she has seen her pediatrician a few times, her asthma/immunologist a few times, her rheumatologist, the cardiologist and her nephrologist. She has also had numerous blood tests, an echocardiogram, and a contrast mri. Yeah. welcome to our world. My girl has real health needs. This isn't a case of momma just taking my kid to the doctor for a cold. I wish. To top it off, we live 2 hours away from her specialists. fun times.
Okay, I'll move on. Sorry, it's been a hard week.
Anyway, on Wednesday, Maddie saw the Immunologist and Nephrologist and then we went to a new place. We went to the Nutritional Healing Center. It was eye opening. This center I would say is on the fringe of "conventional" medicine, but given that Maddie lives in chronic pain and is constantly sick, I am desperate.
So. We saw Mary and had Nutrition Response Testing done.
And we learned that Maddie has a high amount of formaldehyde and radiation in her body. We learned that she is very low in zinc and vitamin c. We learned about the foods that Maddie's body really doesn't like. It's not an allergy, but it's about how her body processes food and stimuli.
And it totally made sense given how Maddie feels. But man.
Here is her list of foods to AVOID...
milk, wheat, beans (this includes all legumes like black beans and kidney beans, but also peas, green beans and soybeans!), honey, coconut, nightshades (white potatoes, tomatoes, peppers), eggs, turkey, pork, lamb and beef.
So what is left?
NOT MUCH.
Chicken. Rice. Sweet potatoes and some vegetables.
It's really interesting to me as Maddie has been tested for so many similar yet different things. Before she was 2 years old we knew she couldn't have any milk products. She even had a stomach biopsy and was tested for celiac probably 7 years ago. The gastroenterologist was surprised that the result was negative. In fact, she really thought Maddie had Cystic Fibrosis. As does the immunologist. (two negative tests on that. The immunologist finally years ago said that the test only screens for the 30 most common strains of CF and that within those parameters Maddie doesn't have it. .. but he thought she did.)
Sorry, that's beside the point.
So Maddie is eating chicken and rice. That is not much fun. And to make matters worse (or better) her body is detoxing. So she feels like she has the flu. My prayer is that very soon she starts feeling better and that the benefits of eating foods her body likes will be evident.
In the meantime, she is taking big doses of Vitamin C and Zinc.
And she is doing what she does. FIGHTING.
Cause in the middle of all of this, she had a winterguard performance on Thursday night and Championships on Saturday. She was BEAUTIFUL.
and they won the GOLD!!
It was so exciting!
Now consider what you would do if you were told that the very things you were eating every. single. day. were making you sick.
Yeah.
This is what Maddie faced this week.
If you have been around here for anytime, you know that my Maddie girl has health issues. She is a fighter and has been for 16 years. We see more specialists than well, I don't know, but a lot. And NOTHING works.
Maddie has been poked, prodded, pulled, pushed and pinched more times than we can count. Every time we feel like maybe, just maybe we can figure out SOMETHING! And pretty much every. single. time. we are given a no. I'm not saying I want a yes to some horrible disease. No thank you. But I invite you into the world of watching your child live with chronic disease and pain for 16 years and not be just a little bitter.
So let me get you up to speed. Maddie has pretty much been sick since August 25th... the first week of this school year. She has gotten almost well and then has gotten sick. I would say she has been functioning at 60% to 75% of her best for at least the last 6 months. During this time she has seen her pediatrician a few times, her asthma/immunologist a few times, her rheumatologist, the cardiologist and her nephrologist. She has also had numerous blood tests, an echocardiogram, and a contrast mri. Yeah. welcome to our world. My girl has real health needs. This isn't a case of momma just taking my kid to the doctor for a cold. I wish. To top it off, we live 2 hours away from her specialists. fun times.
Okay, I'll move on. Sorry, it's been a hard week.
Anyway, on Wednesday, Maddie saw the Immunologist and Nephrologist and then we went to a new place. We went to the Nutritional Healing Center. It was eye opening. This center I would say is on the fringe of "conventional" medicine, but given that Maddie lives in chronic pain and is constantly sick, I am desperate.
So. We saw Mary and had Nutrition Response Testing done.
And we learned that Maddie has a high amount of formaldehyde and radiation in her body. We learned that she is very low in zinc and vitamin c. We learned about the foods that Maddie's body really doesn't like. It's not an allergy, but it's about how her body processes food and stimuli.
And it totally made sense given how Maddie feels. But man.
Here is her list of foods to AVOID...
milk, wheat, beans (this includes all legumes like black beans and kidney beans, but also peas, green beans and soybeans!), honey, coconut, nightshades (white potatoes, tomatoes, peppers), eggs, turkey, pork, lamb and beef.
So what is left?
NOT MUCH.
Chicken. Rice. Sweet potatoes and some vegetables.
It's really interesting to me as Maddie has been tested for so many similar yet different things. Before she was 2 years old we knew she couldn't have any milk products. She even had a stomach biopsy and was tested for celiac probably 7 years ago. The gastroenterologist was surprised that the result was negative. In fact, she really thought Maddie had Cystic Fibrosis. As does the immunologist. (two negative tests on that. The immunologist finally years ago said that the test only screens for the 30 most common strains of CF and that within those parameters Maddie doesn't have it. .. but he thought she did.)
Sorry, that's beside the point.
So Maddie is eating chicken and rice. That is not much fun. And to make matters worse (or better) her body is detoxing. So she feels like she has the flu. My prayer is that very soon she starts feeling better and that the benefits of eating foods her body likes will be evident.
In the meantime, she is taking big doses of Vitamin C and Zinc.
And she is doing what she does. FIGHTING.
Cause in the middle of all of this, she had a winterguard performance on Thursday night and Championships on Saturday. She was BEAUTIFUL.
It was so exciting!
She was so tired and hurting, but no one would have known.
And how are we doing with this new twist? We are doing what we do. Researching, learning and living. Doug is doing his best to fix this current mess by learning to cook some new and modified dishes so that it's not just chicken.
Tonight we had salmon patties made with salmon mouse and quinoa as the binder topped with avocado and jicama relish and brown rice/quinoa and asparagus. It was delish.
Up next, marinara sauce without tomatoes or peppers. Good luck Doug.
And if any of you out there know of any great recipes that don't use traditional ingredients, Maddie would sure love to have pizza. Well, you know, pizza without wheat flour or tomatoes or cheese or meats. Yeah.
Where do we go from here? I don't know. But we have hope.
And if you would like to walk down the road with us for a little while, we are looking for partners in the Kidney Walk. This year's kidney walk is on April 10th in Fort Worth. Maddie has never been able to do the full 3 miles. We are hoping that maybe this will be the year.
It doesn't cost anything to join the team, but the goal is to get donations. All donations go to the National Kidney Foundation towards researching a cure for this disease. Even a $5 or $10 donation is welcome. And we need team members.
Thanks.
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