TConway
  • Female
  • Redmond, WA
  • United States
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Best city to live for Duchenne care?

Started this discussion. Last reply by Jason Hubal Mar 1, 2015. 1 Reply

My twin nephews were recently diagnosed with DMD.  We are still waiting on the lab results to see which mutation they have.  They will be turning 4 years old in May.  Their family is currently living…Continue

 

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About me:
My twin nephews were recently diagnosed with Duchenne.
Name(s) of child(ren)/individual(s) with Duchenne:
2
Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
Seattle
State:
WA

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At 11:46pm on March 16, 2015, Ruth Griffith said…

Hi Tracy--

Yes, let's stay in contact! (sorry I went AWOL-- it was my daughter's birthday party weekend and then a houseguest on top of it). Your nephews' ethnic background might work in their favor as far as side effects from the steroids: the Caucasian kids seem to be the ones that really puff up, and much less so with Asian kids.  (BTW, my husband and I are caucasian parents of 2 Korean adoptees). I asked my husband about the stem cell research and he did say that the stem cell route holds huge promise but we're not near the point of knowing how to apply it in the US. He thought it might be a shady deal they're offering in Mexico. anyhow, I have to sign off now, but hope you're keeping your chin up!  --Ruth 

At 8:25pm on March 10, 2015, Ruth Griffith said…
(continued from last comment...)
I know a Chinese family (lives on the eastside-- Issaquah?) who avoided the steroids for the first 2 years and went with Chinese medicine, but it didn't seem to do any good, so they decided to start hormone treatment.  I just ran into their son at Children's Hospital a few months ago and was surprised to see that he didn't seem to have much of the side effects from the steroids:  good height, normal weight, no puffy face.  He's been on the steroids for 3 years or so.  He's the only kid I've ever seen that looked so unaffected in appearance from the steroids-- after 3 years, you'd definitely show the side effects.
My son unfortunately has deletion 65-67, which is in the "tail" of the chromosome and thus has no hope from the exon-skipping drugs.  The good news about your twin nephews is that their deletion is more common, and there might be some treatment available for them in the next few years.
I wish I knew what to tell you about the stem cell research.  I really have no idea.  I'll ask my husband, and if he knows anything, I'll pass it along to you.
Hang in there.  It's really hard for the parents, but the important thing to remember is that these kids can be happy and have a full, happy, rewarding life.  You just have to adjust all your expectations about what you thought the future would look like and that adjustment process goes on and on.  I just take it one day at a time. 
--Ruth
PS:  you might like to join a Facebook group called "FACES northwest".  There is a woman on that discussion that is so helpful and kind-- Karen Twede.  Whenever I had a question, she would always have something helpful to say.  If you want to join but can't find it, let me know.  Sometimes it can be a downer because people are venting or sharing some new sorrow, so don't feel like you MUST join. 
At 8:24pm on March 10, 2015, Ruth Griffith said…
Hi, Tracy--
The steroid decision is hard to make.  I read up on it and because it's supposed to add extra years of function to heart and lungs, we opted for it.  However, kids on the steroids do look unusual-- their faces get very puffy, they tend to gain weight and have stunted growth.  My son is 9 now, and his 6 year old sister is taller than he is.  They are both Korean adoptees and genetically speaking, they are both very skinny kids, but since starting the steroids at age 5, my son has gotten the puffy face and fattened up.  Because he started so skinny, he doesn't look too fat, but some kids really have trouble with obesity.  It's really tough.  My son is now in the 1% for height.  I would say that the boys on steroids sometimes look like they have dwarfism (arms and legs seem to look disproportionately short too) but that's just the kids that I see personally (I have friends in Bothell and Seattle). I know a kid that was never put on steroids and he's still alive at 29.  His name is Casey and he's lives in Poulsbo.  The book "Revised Fundamentals of Caregiving" is about him and my brother-in-law, Jonathan Evison, who was his caregiver for a while.  
It seems like there isn't any perfect answer.  My son has the developmental delays too, so even though he's 9, he's cognitively about like a 4 yr. old.  He's a really happy guy and I went on the Dr's advice to take the steroids, because he doesn't seem to be troubled about things-- he still doesn't mind looking different at school, and he's very friendly and has lots of friends.  Because he's so short, the Dr. advised us to see an endocrinologist to discuss growth hormone, but the endocr. said there's not really any growth hormone option for kids with duchenne. (continued in next comment...)
At 1:18am on February 20, 2015, Ruth Griffith said…

I'm sorry to hear your nephews were diagnosed with Duchenne.  I have a 9-yr-old boy with Duchenne.  He is quite possibly the happiest, most cheerful little person in the world.  I hope you are hanging in there all right.  Please reach out if you need to connect with somebody in the same boat.

 
 
 

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