So, we survived out trip to Riley. First things first, it was absolutely surreal being there. For those of us who live in Indiana, Riley is known not as the place for sick kids, but the place for REALLY sick kids. And especially for us here in Fort Wayne because we have plenty of pediatric physicians and even specialties -- so when you hear someone has been referred to Riley, it makes you nod your head solemnly and think, "Oh my gosh." That's just the general feeling around here when it comes down to it, and I couldn't believe that WE were there.
Adelle was seen by a hematologist (not an immunologist, like I thought, due to a miscommunication) in the Hematology/Oncology department. So were right there with all these poor sick kids going through cancer treatments, their little bald or fuzzy heads and ports sticking out of their chests or handicapped children in special wheelchairs or strollers... oh my gosh, my heart just went out to these kids. And then there we were in the midst of all of this, Adelle talking and playing and eating a snack, looking so healthy and normal on the outside that you'd never guess she had anything wrong going on inside of her.
So the appointment went as well as we could have ever hoped considering we were at a place designated for truly ill children. The doctor thinks she has Chronic Benign Neutropenia with no known cause, which doesn't cause much harm to the child unless an infection gets out of control. And most children grow out of it.
Adelle's neutrophil count was slightly higher than it was from her previous labs a couple of months ago. Is this just random? Is it because we're treating her for the yeast over growth and supplementing with lots of probiotics? Or is she simply starting to "grow out of" this mystery condition? No one knows, but I do feel in my heart that the yeast over growth is likely the root cause of her problems. We're continuing to treat with the medicine for another 3 weeks in addition to being on a gluten-free diet.
Speaking of being gluten-free, I have also 100% switched to a gluten-free diet with Adelle. And I have been absolutely amazed at how much energy I have had lately. It's been darn near boundless! I have felt so good!! At first I thought it was just me feeling better after having such a bad cold/sinus infection, but this high-energy feeling hasn't gone away -- until today.
Due to an unfortunate sequence of events yesterday at the hospital, I ate a lunch with a tiny bit of gluten (couscous sprinkled in a sandwich wrap -- I didn't eat the wrap). I didn't know what would happen if I ate gluten. My greatest fear was having some kind of stomach cramps that would have me running to the bathroom for salvation. But nothing happened -- I felt fine. And I figured I probably don't have any gluten sensitivity problem. Then I woke up this morning, tired, feeling unrested and without energy, and my shoulder muscles were sore and achy as though I had done some type of strenuous upper body workout. At first I just thought I was tired from yesterday and our trip to the hospital, which lasted all day and was a bit stressful, but now I'm thinking it's from eating that darn gluten. I'm just shocked by this outcome, to be honest, not knowing that gluten could do that to someone (unless those with Celiac disease, which I don't have). Of course, I can't tell just by this one experience that it is definitely the gluten that's causing my symptoms, so I'll be curious to see if my energy returns and if any other encounters with gluten cause the same symptoms.
In the meantime, I plan to update the site soon with gluten-free recipes -- and you don't have to be on a gluten-free diet to enjoy these healthy dishes!
Adelle was seen by a hematologist (not an immunologist, like I thought, due to a miscommunication) in the Hematology/Oncology department. So were right there with all these poor sick kids going through cancer treatments, their little bald or fuzzy heads and ports sticking out of their chests or handicapped children in special wheelchairs or strollers... oh my gosh, my heart just went out to these kids. And then there we were in the midst of all of this, Adelle talking and playing and eating a snack, looking so healthy and normal on the outside that you'd never guess she had anything wrong going on inside of her.
So the appointment went as well as we could have ever hoped considering we were at a place designated for truly ill children. The doctor thinks she has Chronic Benign Neutropenia with no known cause, which doesn't cause much harm to the child unless an infection gets out of control. And most children grow out of it.
Adelle's neutrophil count was slightly higher than it was from her previous labs a couple of months ago. Is this just random? Is it because we're treating her for the yeast over growth and supplementing with lots of probiotics? Or is she simply starting to "grow out of" this mystery condition? No one knows, but I do feel in my heart that the yeast over growth is likely the root cause of her problems. We're continuing to treat with the medicine for another 3 weeks in addition to being on a gluten-free diet.
Speaking of being gluten-free, I have also 100% switched to a gluten-free diet with Adelle. And I have been absolutely amazed at how much energy I have had lately. It's been darn near boundless! I have felt so good!! At first I thought it was just me feeling better after having such a bad cold/sinus infection, but this high-energy feeling hasn't gone away -- until today.
Due to an unfortunate sequence of events yesterday at the hospital, I ate a lunch with a tiny bit of gluten (couscous sprinkled in a sandwich wrap -- I didn't eat the wrap). I didn't know what would happen if I ate gluten. My greatest fear was having some kind of stomach cramps that would have me running to the bathroom for salvation. But nothing happened -- I felt fine. And I figured I probably don't have any gluten sensitivity problem. Then I woke up this morning, tired, feeling unrested and without energy, and my shoulder muscles were sore and achy as though I had done some type of strenuous upper body workout. At first I just thought I was tired from yesterday and our trip to the hospital, which lasted all day and was a bit stressful, but now I'm thinking it's from eating that darn gluten. I'm just shocked by this outcome, to be honest, not knowing that gluten could do that to someone (unless those with Celiac disease, which I don't have). Of course, I can't tell just by this one experience that it is definitely the gluten that's causing my symptoms, so I'll be curious to see if my energy returns and if any other encounters with gluten cause the same symptoms.
In the meantime, I plan to update the site soon with gluten-free recipes -- and you don't have to be on a gluten-free diet to enjoy these healthy dishes!