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"working hypothesis" of DRD for newly adopted daughter
Last Post 14 Jan 2014 04:29 PM by Retta Beery. 3 Replies.
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ElizabethUser is Offline
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30 Dec 2013 01:27 AM
    We would love your prayers for our daughter (age 14, adopted one year ago) and our family. Recently after a pediatric neurology resident in our new home state of Colorado suggested dystonia instead of CP, I began researching online. After seeing yours and other stories and reading Dr. Fink's name often I decided to email him with my nagging questions that this diagnosis seemed to answer. He graciously called me the next day and is following the case remotely. The short story is that our daughter had a big reaction to a small dose of Sinemet. We are now at day 31 of this "experiment" using a very low dose throughout the day (1/2 of a 25/100 tablet daily total.) We have seen a lot of improvements, but we don't know for sure yet that this is definitely the diagnosis, and we don't know how "therapeutically beneficial" this medicine will be. I would just love for you to pray for us as we ride this emotional roller coaster in search of answers. We know God is in charge of all this - no matter what the ending is.
    Retta BeeryUser is Offline
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    13 Jan 2014 05:40 PM
    Dear Elizabeth,
    I've been praying for your daughter and your family. How has she been doing? Has her Sinemet been increased? Please keep me updated as I would love to hear more. Are you interested in having her full exome sequenced to possibly find something that could help identify what's going on with her?
    Praying for you all,
    Retta
    ElizabethUser is Offline
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    13 Jan 2014 11:21 PM
    Dear Retta. Thank you so much for your prayers. She is doing very well. She's eating finger foods by herself, helping with dressing, holding her head up better, talking more, playing independently,using a pencil, sitting up alone for a few minutes....She could do almost nothing before, so at this point it has been life changing, no matter what the final outcome ends up being. We have increased the Sinemet extremely slowly; we are now up to 15/60 mg total daily dose. If we increase faster she gets jerky/twitchy. We are interested in the sequencing, but we think it is cost prohibitive for us right now. For now we are doing the dystonia comprehensive sequencing panel, which is a little more doable for us.
    Thank you again for your prayers and interest, Elizabeth
    Retta BeeryUser is Offline
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    14 Jan 2014 04:29 PM
    Dear Elizabeth,
    I'm so happy to hear about her progress. Please let me know the results of the sequencing panel. I will continue to pray and look forward to hearing updates!
    Retta
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