So I knew that his growth had not excellence in the 6 months he was on growth hormone. It was the same for all intents and purposes. Bloodwork needed to be done to make sure there was not significant improvements in his IGF-1 factor. The doctor was supposed to call me with the results and to discuss the plan. At the appointment he didn't want to go into detail because he didn't have all of the information yet (I had called to ask to do the bloodwork prior to the appointment as I knew he didn't grow as hoped, but doctor wanted his measurements to prove this prior to bloodwork). I was told it could take up to a week after the bloodwork was drawn.
Lo and behold, 5 days after the bloodwork was drawn, I got a letter in the mail (mailman delievered our mail at 4:30 that day, doctor's office closes at 4. Some days we get our mail by 8:30 am).. Well, that is somewhat inaccurate. I got a copy of the office visit note (which is standard for where we go). Initially I was reading through it. No new news. Then I get to page 5 of 5. The results of the new bloodwork are in. Appearently I'm to immediately stop giving him GH, and as soon as insurance approves, he is to be on another medicine. That is injected. Twice a day. Oh yes, his diagnosis to why he isn't growing is something different.
Being the information craving Mama Bear that I am I research the drug some. There are some different details with this drug. It must be given with food. If not, Obsidian can become hypoglycemic. In general, Obsidian can now become hypoglycemic (but the risk is particularly high if he doesn't have a full meal within 20 minutes of eating). When I talk to the doctor the next day, he does not mention this. I bring it up to him. He said, oh yes, that could happen. I'm sure my nurse will tell you about that. She'll contact you in the next week. But if you haven't heard from her in 2 weeks, call us. Don't worry my friend. I will be all over you case in less time than that.
I'm curious to how this is going to pan out with our insurance. This is a relatively new drug, released in 2005. It is not considered experimental, but at the same time, there is not a large body of evidence yet. The large long term longitudinal studies do not exist. Partly because of time. Partly because it is rare. It is an expensive drug. As Obsidian is 3 and if it works he will have to take it until he has completed puberty, this will be a long term treatment. It is an expensive drug. All of these things combined, make me wonder if he will be approved. Or if I will have to jump through hoops. Or do battle. Or if I will win the battle.
And I'm tired. And sad. I knew that the odds were not in his favor for growth hormone to work as well as it can in some people, but I had hope. You have to have hope to enter in on something like that. I have hope that this new drug will help. I have fear that it won't. I have a fear that we will not get the chance to find out if would work. I have a fear we will find that it does work, switch insurance (which we do regularly, long story, I am not a fan of the US healthcare system as it is today) and they don't approve it. I have a fear that I will have episodes of hypoglycemia to deal with. I fear that Obsidian will have to deal and feel hypoglycemic. I know how that feels, and it sucks. I fear that there are negative long term risks, risks that we don't even know are risks. By the time that data is in, it will be far to late for Obsidian. So many people think it is the actual injection that is the "bad" part. Honestly, I could care less. I have no issue or fear of that. Obsidian doesn't like shots, but it is not an ordeal. It will become a part of life, as did the bedtime one did. I'm not looking forward to it. I dread even more having to every day have a full breakfast and dinner for him and making sure if he/we are out at those times I have the stuff packed and with him/us. But is a dread like filling up my car with gas when it is 10 degrees below zero. You live with it, you do it.
It is the other fears that keep me up. But one foot in front of the other. As my new keychain says:
God grant me
the serenity to accept the things I cannot change
the strength to change the things I can
and the wisdom to know the difference
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