Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Good Afternoon, It has been awhile since I have posted. I continue to uplift the mito families in prayer at the same time trying to deal with all of the things that go with this disease. Each time mito take an angel, it takes a piece of my heart as I am sure each mito mom and dad. Then with Mattie passing with the best doctors was also a blow. My delimena is JD is 16 years old and I felt that when a new mom come into the group I felt that all I good give was what we have done to try and keep the illness from progressing. It saddens me to say that where JD has started with the illness to where he is now. Like I said in a post years ago I dislike the word progression more than mito. We did get JD to see Dr. Whiteman at the Mayo Clinic in Rochester, Minn, February 2004 and got to meet two lovely families - Darla and a. We went back in May and Dr. Whiteman said that mito cocktails have to individualize to each child. He also said that the doctors here should have been working with that cocktail since Dr. Shoffner's report 3 years ago and if they had, his progression might not be as far. Dr. Whiteman said that some of the depletions were the lowest numbers he has seen since he has been at the mayo clinic. We also learned that local labs are not running the blood work accurately and medicaid is approving nutrients from the least reputible company. In Dr. Whiteman's last letter he said that the depletions were in the last stages. We are still hopeful that JD's numbers can come up. Our biggest problem that continues is that JD "does not look sick." At the last visit, JD told Dr. Whiteman that he was not lazy and Dr. Whiteman said, "NO, you are not lazy and you are not crazy like some of those doctors were trying to you were!" This was good for JD to hear and me. We go back in November and if the treatments work it will be so well documented that it will help with other mito patients getting help with insurance. JD only went to school one day last year and he is on complete homebound. I refuse to have the school play a part in any progression. I love this group and pray that a cure is found soon. Darlene Quote Link to comment Share on other sites More sharing options...
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