quick update:
We are in the process of moving into my Mom's house. We got a knock on the door 12 days ago saying we needed to be out of our house in 2 weeks! We have been busy and only have 2 days left to have the house cleaned out! We've sold almost everything and only are bringing the necessities to my Moms. We'll be here for awhile. Our plan right now is for me to complete the nursing program (16mos.) I should be excepted into the program this next semester. It was 1 1/2 yr waiting list. After that we plan on moving to Alaska. It will be a fresh start for us and we'll be closer to Les' family:)
I just got Ryder's 2nd liver enzyme test back today and they are still elevated. They are even more elevated than a few months ago--which is not good news. We need to go to a GI doctor next.
I have been hassling w/insurance company and they refuse to pay for genetic testing still. I understand their reasoning, but it still stinks! A close family friend just gave us a lot of money. On top of that, another friend raised money through a Tupperware fundraiser for us. I am most likely going to use this money and pay for the test out of pocket. I'm going back and forth with this though right now. It's a lot of money and would only rule out 1 form of luekodystrophy. On the other hand, 2 doctors have recommended this test and I feel this is the closest diagnosis it could be. Determining the diagnosis won't change the outcome, but research is being done on this particular form now. Any suggestions/ ideas? I wonder is I can contact congress for these tests to be paid for? It's worth a try---maybe do that tomorrow:)
Well back to unpacking!!! More updates later:)
Does the Leukodystrophy organization have any resources to pay for the genetic test?
ReplyDeleteGreat idea Cass, I'll find out today. It's crazy that not much is known about luekodystrophy and there are no treatments, but how can there ever be one if insurance co and other resources do not help us even make a diagnosis so we can start research!
ReplyDeleteOn the phone all day trying to find funding--I will find something!!! Contacted ULF, NIND, State Health dept. for AZ, researchers in several states. Talked to one of Ry's dr.s and found out testing info was wrong. It will be between $1300 - $2000 for testing. Only 3 places conduct this test in USA! I feel I could raise the money through family/friends/coworkers---but first I want to find other options because luekodystrophy NEEDS to be studied and made more aware to the public. If I don't make noise and find funding for Ryder in silence--it won't help anyone else (including Ryder)I will wait a few days to see if I get calls back. If not I'll contact newspaper, congress, and anyone who will get the story out!!!
ReplyDeletehave you tried to contact the 3 places that do these tests and see if they know of any organization that can help with the test? Will they trade tests for research op? How about the United Leukodystrophy Foundation? They may be able to help.
ReplyDeleteI have noticed some organizations doing clinical trials. Would they be able to help?
ReplyDeleteNot sure if this is an option....
Holly