So no new news yet again. We went to a doctor at the U on Monday who ruled out one of the possible autoimmune diseases which we were already 90% sure he didn't have, sadly it would have been one of the better autoimmune's but at least we checked another box off I guess. We flew to Vegas on Thursday for the other doctor's appointment, we weren't super impressed on Thursday but he had us come back in on Friday and he brought up some tests that from what he could tell hadn't been ran. So he is running a couple of virus tests and also a heavy metals test to see if anything like that is in his system - the heavy metal thing would be an amazing thing because he could just do a cleanse, but both Sean and I feel that its bigger than that and don't want to get our hopes up. So we should hear back on the viruses this week, the metals next week...we may not find a solution but at least we got an outside opinion on some different possibilities and we got to spend some time with Sesily, Trent and the kids which was a nice break!
Sean is scheduled to get another IVIG treatment on Thursday, I am crossing my fingers that it happens. It the middle of all of this our insurance has decided to be butts and not approve the treatments...not only are we fighting to get the $36,000 from September paid but more importantly trying to get him approved for this month's treatment so we can stay on schedule. Why can't things just be easy?? I am hoping things clear up for us there, I swear if its not one thing its 10 more. I think we are on track to get things worked out - its just a battle doing it.
So that's that for an update. Still sitting on the waiting list for Mayo clinic, and in the meantime hoping that this IVIG treatment kicks in. Sean's CPK levels (muscle enzyme) were down to 26,000 last week - which is still crazy high but just 10 days before he was at 37,000..so we are hopeful he is responding and its just a slower process than what we had planned. Still good news though! again, I can't thank everyone enough for all the comments and calls!!
Tuesday, October 13, 2009
Yet another informationless update...
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5 comments:
Thanks for the update. How are you feeling? (with the baby)
I am sure they have tested him for Fibro Myalgia but if they haven't, get him tested. My brother in law has alot of these same symptoms and they just found out yesterday he has a sever case of it and no one picked up on it. Hope you get some answers soon. :)
I'm so sorry you are dealing with all of this. I bet it is so hard, especially being pregnant too. I hope you find out what it is soon. We are praying for you guys.
And all that insurance stuff is awful. We went through a lot of that when Easton was born. It seems like they always give you the run around. I hope it all works out.
Lynzi, I am sorry that you keep coming to dead end after dead end you would think it would get easier after suffering so much. Keep perserving and relying on the Lord I know your family is in His hands. Good luck and thanks for the update.
wow Lynzi-the whole thing is awful! Good luck with the insurance.. those people can be punks. How are you doing?? If you need anything let us know
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