Monday, April 25, 2011

It has been brought to my attention

That I need to go more strict with our already strict diet. There are some things I can add to ur diet but several things that need to come out. Like wheat. I just talked to ur dietician from the UIHC and she told me that I need to cut out that as well. There are other grains we can use to make bread but I have never tried them. Which means that those snack crackers have to go too. And other junk food like puff corn. I hadn't even had them long enough to add to the safe list.

And then the doctor's office called. They had some of the test results back. Everything looks fine except my son's blood test showed he had ketosis going on. That is when you have no glycogen stores in your liver and your body starts burning your fat for food. If it goes on long enough it can cause problems. The nurse said she thought it was fine because he had been fasting. I said no. He had not been fasting. We had just eaten lunch. I made sure he ate before we left. According to my diet journal he ate the following: breakfast- oatmeal with butter and dextrose (glucose). Lunch- corn noodles, turkey, cheese and pickles. then he came home sick and ate home made bread with butter. that was all before we left for the appt. There was plenty of glucose and carbs there. So we will have to get more tests done. In the meantime I really need to get him to try to eat more carbs.

They also called to let me know about the appt for his echocardigram (i think that is how it is spelled), and my appt to get formally diagnosed. His chest pain keeps getting worse. I am scared for him.


  1. I was quite displeased with the quality of my consult with the UIHC dietitians. Remember it is a "learning hospital."
    I remember back when I was in Pre-Med at the U of I (before I dropped out) I was working in the hospital when an anaesthesiologist told me something astonishing. He said that recent medical research showed that in learning hospitals, surgical residents have an extremely high rate of complications until they have performed that surgical procedure 7 times. Basically, until they have successfully treated 7 patients with a specific complaint, they are incompetent at treating that complaint. This is generally true in most all medical disciplines. This is the dirty little secret of hospitals. If you have a rare syndrome, please do yourself a favor and find a doctor who is experienced in treating your specific ailment, and has a proven track record.\.

  2. I agree. I am looking around for a long term care-provider who specializes in EDS. The doctor who diagnosed us specializes in metabolic disorders. We are using her to run tests for us to find out why we have have issues with glycogen storage, hypoglycemia, and now ketosis.

  3. UIHC kind of monopolizes the medical arena around here, I hope you don't have to go far. In retrospect, I would have gone to Northwestern U Medical Center in Chicago or the Mayo Clinic, but my issue was primarily surgical.
    I think my biggest problem with UIHC is poor followup. Like NONE, in my case. You have to push forward and advocate for your own treatment. But be aware they do have a Patient Advocate (I seem to need their help far more often than anyone should have to).

  4. I have found that none of the doctors i have seen anywhere have ever tried to help me. they all told me everything was fine or wanted to give me all kinds of meds. It is hit and miss with docs. The last one we saw at the UIHC that actually diagnosed us was nice and comapssionate and actually took the time to listen to everything. And she is following up on stuff. She is a metabolic geneticist. I still plan to look around for a doc who specializes in EDS though. But in the meantime, this one is doing what I need her to do, running tests and listening.

    I am big on advocating for myself and my children. I kinda piss doctors off with my pursuit of answers.