Amy Kendrick
  • Female
  • Harrodsburg, KY
  • United States
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  • Jessica Rownd
  • Pat Furlong
 

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Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Lane
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Harrodsburg, KY
Lane was 2 yrs old when dx with DMD. He is a new mutation we did not have any family history. I started Lane on Deflazacort at the age of 3 which at the time was unheard of. I believe Lane was the first that started at this age for Dr.Wong. After many discussions Dr. Wong agreed to allow him to start steroids and it has paid off! Lane took 15mg from the age of 3 until this past April when we increased to 22.5 mg. He can still walk, run, jump basically anything he wants! His cardio and respritory are still normal as well.

Lane has duplications of exxons 46-60.

Amy Kendrick's Blog

Desperate for help...School system has finally won because I am exhausted! IEP to homeschool???

Posted on December 27, 2011 at 9:43pm 1 Comment

Lane is 11 and in the 5th grade he has IQ scores from low to extremely low. Number wise he has a few that are right at 70 but others as low as 36. I have fought since 1st grade to get the school to acknowledge how behind he was. But they always insisted all was ok because he was making progress on goals etc. Finally couple years ago was clued in and started working with a state advocate. She pointed out quickly he was meeting goals because they where vague and nothing specific to make them…

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At 1:22pm on November 4, 2008, Jessica Rownd said…
Sorry it took so long to get back to you. We are suppose to go back to Cincy next year, around Sept. That is when we would get ready to start the steroids. Any news on the next baby?
Jess
At 9:09am on October 16, 2008, Jessica Rownd said…
I just read that your son was diagnosed at age 2. My son Wyatt was diagnosed at 15m. How did ya'll come to his diagnosis so early. We did by accident. Dr. Wong wants to wait til he is 3 to start steroids. He just turned 2 in Aug. Any suggestions on how to stretch and keep up with things with a 2 year old. It seems that everyone finds out so much later so doing the stretches are a little easier because the boys understand a little more.
I read your post that you just found out that there is a 15% chance you could have another baby with MD even though you are not a carrier. I can't believe the genetics docs didin't tell you. Got to go Wyatt's screaming.
 
 
 

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