once you get the diagnosis, what do you do? How do you move forward?

I am so terribly confused...actually I am running the whole gamut of emotions.  Part of me would like to stay in a bliss of denial yet I know that I can not.  How have you moved forward and fought for your sons?  I feel as though my hands are tied.  I don't understand all the talk of research and science.  I want to help my son but how???  My doctor does not want to start steroids until he is at least 5.  What do your docs say?  Isn't early treatment best?  Side note, my son is 14 months.  Is there over the counter medications/vitamins that are helpful?

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Its very overwhelming at the beginning.  Take some time for yourself to come to terms with the diagnosis.  You don't need to jump into steroids or anything else today.  At 14 months old, there's not a lot you can do that is going to have a big impact on your son's life, so you don't need to make any big decisions today.  You have time.

Both our our sons started on steroids at about 4 years old.  I believe the current rule of thumb is to start them when they seem to plateau strength-wise.  This can vary with every child, but I think around 5 is probably average.  At the time we started steroids, we also got them on daily dose of Vitamin D and calcium.

There are some great documents on PPMD, so look around and read some of the documents, especially the care ones here:  http://www.parentprojectmd.org/site/PageServer?pagename=Care_guidel...

Dear Brooke,

You have time to learn the science (when you are ready), he's only 14 months. My son wasn't even diagnosed until he was 6 1/2 years. Research is going on whether you are up to speed or not, so don't worry about that part.

Right now, you're on an emotional rollercoaster, and you really wish you'd wake up from this bad dream so you could get off the ride and get back to your old way of life, before DMD. It takes time, and you will come to realize that this is not a bad dream at all, just different. Your son is still the adorable little munchkin he always was, and you are still the parent loving him to bits. Don't beat up on yourself when you feel down or overwhelmed, it's normal, we've all been there, done that and bought the T-shirt to prove it.

The rollercoaster goes in circles too, so that sometimes just when you thought you are slowing down and are about to get off, it throws you for another loop and you find yourself having a bad day or week. Each time will be a little shorter, a little more bearable, until those times become rare and you are enjoying each day (each hour) as it comes. You will look around and realize you were always on a merry-go-round. Seriously, it gets better, but it takes time and we are all different (including the time it takes spouses to deal with it).

Welcome to Holland helped me, and I wish the same for you. All the best Brooke,

Andrea

Dear Brook,

Both Andrea and Andrew' words are very true and very precious. I have learnt from them a lot.

You can fight for him, you can do it since you are his mom. MOM will never give up.

With share.

Trinh

 

Andrea, thank you so much for sharing Welcome to Holland with me.  What a beautifully written story that is our lives.  Thank you all for your kind words of encouragement.

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