On November 7th, we went to see Dr. K for the results of all the blood work. Anyone surprised it yielded no more answers? We did however discover a new symptom. Areli lately only poops every 7-10 days at most and when she does, it's not much at all. Thankfully, she pooped while in the office and they took a sample that showed positive for micro amounts of blood in the stool. So, I am on an even stricter diet, what you ask? Well, I am gluten free, dairy free, soy free, egg free, peanut and tree nut free. Go look in your kitchen and see what contains one or more of those ingredients... I'll save you the time EVERYTHING does. Yaayyy, not.
Dr. K at this point doesn't know what else to do for Areli, so he referred us to Dr. M a liver specialist at The Children's Hospital.
On November 15, we went to see Dr. M for an appointment that lasted 4 hours. We went over all of her history, Dr. M consulted with many other doctors and decided to test for a rare mitochondrial disease (one of the few she has not been tested for yet). Mitochondrial Hepatopathies, you can read about it here. The blood test measures the amount of lactic acid in the blood stream, so they could not use a tourniquet when drawing the blood. Let me tell you it is almost impossible to find a vein in a chubby infant without one. It took an hour and multiple pokes to get it. My poor baby girl was in so much pain, we both were in tears. When we were trying to get the blood, Baylor, were it is being sent, called asking about the status of it. I guess they were awaiting it and it was being sent express shipping that night. Talk about VIP treatment. We should have some results before Thanksgiving and for the first time since we were in the hospital, I am NERVOUS. If you read the link above she has all of the symptoms, aside from the lactic acid they are testing for. This is the first disease that sounds like it could be it and although I will be relieved to have a diagnosis and move forward with treatment, I don't really like this mitochondrial business :/ ..... we'll see...
All her owies and her swollen eyes from crying.
Thank you for reading about Areli, please share so we can get our story out to help find answers.
Love Mama Linnea
