Simple Life

In January we saw our local endocrinologist for the first time.  He was lacking in eloquence and was quick to condemn the process that we had taken to get to him, however, he assured us that he was going to get Lily to a good place.  Since seeing him she has been on a consistent does of thyroid meds in hopes of regulating her body and beginning to feel better.  Unfortunately, she's not feeling better.  Her symptoms are exactly the same.  Dr. W ran two sets of tests.  The first included and ANA test which measures whether or not autoantibodies are present. This is the 2nd time this test has been run and for the second time, it is positive.  By itself this does not diagnose anything, but it indicates that further testing is needed.  You can read more about it here .  In any case, his suggestion is that we go back to Seattle Children's.  We have an appointment for a full rheumatology and endocrinology workup on April 25. The second set of...

Weeks ago, I took Lily to an endocrinologist here in the Tri Cities.  The man left a lot to be desired in regards to bedside manor, however, he promised answers.  He essentially told me that all the steps we had taken in regards to helping Lily thus far were a waste.  He didn't blame us, but rather the other doctor who started us on this journey.  He was frustrated at the multiple changes in meds Lily had undergone in just two months.  Under his care, Lily is starting over.  He took her off all her meds for a week, then started her back on them at a small dose, to be increased over time.  Monday will mark two weeks at the low dose and the start of the higher dosage. In six weeks we will return for all new testing. The only upside of the lower dosage is that Lily has had less nausea.  She is able to get through her morning without hovering near the bathroom or lying on the couch in a ball.  The downside? She's a mess.  On a daily basis ...

I realize I have not updated anyone; I apologize. I keep waiting for news, something definite that I can share.  I don't have that yet.  I'll give you what I have, which is I essentially more waiting. The hematologist that we saw at Children's in Seattle called one day between Christmas and the New Year to let us know that Lily's ANA Panel came back positive.  As I understand it, this means that she has antibodies in her blood.  The doctor said a post or ANA panel is indicative of an autoimmune disorder, but more testing would be needed to have any definitive results. There was still some of Lily's blood in the lab, so they used that for the additional tests. I have not heard from her again.  I tried to call today, but the office was closed due to the holiday.  Will call tomorrow.  Also, her prolactin levels have returned to normal and she is not longer lactating. We are all glad for that!   We had a big family vacation scheduled over wint...