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22 months... Newly diagnosed

I guess I just kinda wanted to introduce myself, my son Finley was just diagnosed with Duchennes. We were absolutely shocked, and while we're just trying to wrap our heads around everything, I've been doing as much research as I cn to understand everything. I'm still waiting on results to find out if I'm a carrier and if our other son needs to be tested. All of this seems like such a waiting game... Anyone else with a young one diagnosed? Any tips? Anything you wish someone had told you earlier?

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Permalink Reply by lisa burke on March 12, 2013 at 5:43pm

Hi Kristin,
My son, Seth, was diagnosed at 6 weeks - through a newborn-screening program. He's just turned 4 now and is so great. Chin up, there's a lot being developed to help our sons.
Take care.

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Permalink Reply by Kristin Roof-Persons on March 12, 2013 at 6:11pm

Thanks so much Lisa! How is your son doing?

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Permalink Reply by Keith Van Houten on March 12, 2013 at 9:59pm

Hi Kristin. My son was diagnosed almost 6 years ago. What you're going through now is a terrible time.

There's a ton of information out there, I guess my advice to you would be to not let digesting that information take over your life, the way it did for me. I was spending five or six hours a night on the Internet every night, for at least a year. Although I learned a lot, I wish I had some of that time back. There's news on dmd nearly every day. It can become all consuming.

What you need to focus on first is finding good doctors and understanding the standards of care. Find a good multidisciplinary clinic. From NOVA, you have several that are driveable. The standards of care are published on the main ppmd site, in both a technical and family friendly format.

Lastly, get plugged into the dmd community, you'll be amazed at how supportive, informed, and responsive they are. This site is a good start. Facebook is more active than here lately. Start friending some of us you see on here, and soon you'll have a network of literally hundreds. If there's a f.a.c.e.s. group in dc, get in touch and attend their next get together.

Take care.

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Permalink Reply by lisa burke on March 13, 2013 at 7:08am

Hi Kristin,

Seth is currently one very active, very bright and very happy boy! I'll private message you my contact details if you want.

Take care,

Lisa

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Permalink Reply by Evelyn on March 14, 2013 at 11:06pm

it will be a tough journey. it is a tough blow and just when you think you have your mind wrapped around it you will be knocked down again, but there will still be many many many great and wonderful moments as well. my son is 7 years old and was diagnosed around 2 years old. i still feel like I am always waiting for something- most of all the cure, the test results, the phone calls, supplement, phone call from the insurance guy, meds to arrive, more time- haha- there really are only 24 hours a day. I must say I am mostly comfortable with all the waiting- it gives me more time to spend with my son and more time to watch him walk (yes- i am well aware that walking will not always be in his future- I could watch him walk forever), smile, play etc. I try to be proactive, but some things are just out of my hands.

take care

evelyn