We were able to get in to see the Pediatric Neurologist yesterday, a few weeks earlier than our original appt. The Dr. says it is pretty likely Michael does have Neurofibromatosis. He has order an MRI and a blood test to check the DNA. The DNA test should be conclusive because they have identified the two genes where the mutations for NF are located. So, now we are waiting for pre-authorization from insurance and we will get this going. It will most likely be almost two months until we know about the DNA. It takes a month to do the DNA test and it will probably take awhile to get the pre-approval. The forward motion though will begin with therapy. I need to contact our insurance to do PT and ECI.
I was hoping the Dr would be able to tell me what to expect. But, this disorder has a huge range of severity. Some people have a benign problem, just cafe au lait spots and small learning disabilities, while others have severe pain and a small percentage have tumors which lead to death. So, he told me we had to just wait and see what life would bring. The not knowing is hard for me. But, I have high hopes for our little Michael. He is such a sweet boy and we love him so much.
5 comments:
I am so glad that you were able to get into the Dr. early and that we have some unofficial news. Getting going on the therapy will be a big help - I have high hopes too - he is a wonderful and sweet baby. I hope actually knowing will make the journey a little easier - it is frustrating that there are so many ways that he can be affected - I guess time will tell. I will continue to pray for him and all of you. Love ya so, Kathie
Oh my word, Cyndi! I had no idea you were concerned about Michael. (I obviously don't keep up very well)
Also, I hate that every "diagnosis" sounds so scary, even if it's the most benign issue. Can't they come up for words that don't cause a heart attack all on their own?
I will be praying for you guys that you can get the tests done and that this is as small an issue for the wee boy as possible.
We love you Michael - more than words can say!
We love your Mama and Daddy too! You are in my prayers and thoughts.
Love always
Hi, my name is Christine and I work for a nonprofit called Neurofibromatosis, Inc., Northeast. I came across your blog via a Google alert, and I am so sorry to hear about the diagnosis. You may want to check out a few websites for support: The national NF Inc. website is www.nfinc.org. There's also an organization out there called the Children's Tumor Foundation at www.ctf.org. Both websites offer information about NF as well as message boards where you can talk to other families who live with the disease. Best of luck.
That all sounds so overwhelming, I hope you are doing ok. Poor little Michael! We will keep you all in our prayers!
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