Ok, we became aware recently that the appetite stimulant Hannah has been on for several months is 1) a steroid and 2) the cause of adrenal suppression in many pediatric patients. What does that mean? It means that it could cause Hannah's level of cortisol to be severely decreased or eliminated all together. This is a very serious issue, and if not diagnosed, results in death due to cardiac arrest. This was brought to my attention from a post online by a friend whose son just experienced this exact situation. It was a very scary situation and required immediate interaction with supplements, which he may need to now be on for the rest of his life.
We immediately started researching and emailed Hannah's doctor (who is the same doctor as our friend that just found the problem). He did say he is not concerned about Hannah and this condition, but agreed to have her levels checked. They have to draw blood in the morning, so Monday morning before chemo, Hannah will get a blood draw to check to see if her levels are adequate. I would also like to take her off the steroid as soon as possible, but it has to be tapered down, not to cause the same issues with her levels. We'll be looking for something else to help her eat, which is still a daily struggle.
And our health insurance-it seems our insurance company has decided to pull out of New York, which means they have dropped us. They gave us the required 6 month prior notice. We are now working with our insurance rep (and good friend) to see what our options are.
But with all that craziness happening in our lives, we still have much to be thankful for. Here is Hannah's Thankful list, which was published in our local paper this week along with others from some of her classmates. Hope everyone can read it, they published her original letter. xoxo Kim
No comments:
Post a Comment