Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Hi all, just wanna thank you all for your imput on Matt having a second biopsy. My husband feels we should let the doc do the biospy and for the 1st time i disagree with him. Im going to take your advice and really get down to the important question with the doc. Will Matt be the one to benefit from this, as far as treatment and will it slow down the progression, and can they stop the spread of lesions or forming of new lesions, because if its not for these three reasons i just cant see Matt going through all this again. Thanks again for all your suggestions and imput, it really helps hearing from others who had to make these choices. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Hi Barb: The only reason my husband and I agreed to have another biopsy done on Leah was because she was going under for eye surgery last June. The second biopsy didn't really show anything either. My husband and I felt at first not to do another biopsy, but seeing as she was going under this would be a perfect opportunity. My husband and I agree that we aren't too concerned about a firm diagnoisis. It wouldn't change anything we would do for Leah now. She is getting her supplements, and we mointer her diet a bit as best as we can, and she is getting her therapies through school. I know our metabolic doctor is alittle frustrated that he can't determined exactly what is going on with Leah. She isn't regressing and is making some neat gains. They took some of my blood and Leah's blood to do a mutation study at town. We just keep plugging along. You just know in your gut what you want to do and why. I must admit, that our last visit with our metabolic doctor my husband and I both came away with the feeling that he was delighted to see where she was at, the gains she has made and we both firmly believe that the metabolic doctor didn't think Leah would live to this age of 6 1/2 years old. And we both came to these conclusions separately. On another note, I forgot to mention that Leah has now lost two teeth. They were really loose and the aide at school pulled them for us. I couldn't bear to pull her teeth. Leah at first was alittle ticked at the aide, but was so proud of showing me her two teeth in separate baggies. And then when she got money for them, she kept holding the money bag. She still points to her missing lower spot on her mouth about her teeth. What was neat is her teacher and aide met Leah's old kindergarten class at the park and had them show her all their missing teeth to show her that she was the same as they were. An average almost 7 year old. Nerenhausen 'mom to Leah matts_mom96 wrote: >Hi all, just wanna thank you all for your imput on Matt having a >second biopsy. My husband feels we should let the doc do the biospy >and for the 1st time i disagree with him. Im going to take your >advice and really get down to the important question with the doc. >Will Matt be the one to benefit from this, as far as treatment and >will it slow down the progression, and can they stop the spread of >lesions or forming of new lesions, because if its not for these three >reasons i just cant see Matt going through all this again. Thanks >again for all your suggestions and imput, it really helps hearing from >others who had to make these choices. Barb > > > > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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