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Toddlers: 12 - 24 Months
DD just diagnosed with muscular dystrophy. Now what????
I also posted this on the special needs board, but thought I'd pop it on here too....
My husband has muscular dystrophy. He was diagnosed as a young child, and while he's struggled with it his whole life, he has grown into a fabulous man. We were told prior to having DD that his MD was a recessive gene, and therefore not likely to be passed down. He is also the only one in the world (really) with his particular kind, so he can't be lumped into any category. There is also no data or history to apply to him and his prognosis. It's all really frustrating. We found out this week that she has it (which likely means it's a dominant gene instead). We've had a rough week, and are heartbroken for the challenges she'll face as she goes through life. She is, however, a most wonderful, happy, determined, contented little girl, and I know she's tough enough to handle this. It's just hard because life is tough enough. You want to pave the way as much as you can for your child. We're working to find a great neurologist and she starts PT in the new year. I wondered if anyone else's LO has MD, and what you can tell me about your experience, any online support groups, what you've done for PT, what you've learned, etc. I have a bit of insight through DH, but somehow it's "different" now, and I need to find things out for me, you know? I really would appreciate any info you have. I guess this goes out to anyone with a LO with special needs - not just MD. Thanks in advance.
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Re: DD just diagnosed with muscular dystrophy. Now what????
I don't have any advice, but I didn't want you to think this post was being ignored.
I'm sorry about your DD diagnosis ((hugs))
I don't have any advice but I just wanted to say I'm sorry.
Big {{{hugs}}}
I'm so sorry for your DD's diagnosis.
This is a group that works mainly with Duchenne's MD, but it may be a good resource to get some support and guidance.
https://www.parentprojectmd.org/site/PageServer?pagename=nws_index
I just want to wish you luck.
What I did was find as many people in our area that had the same issues the boys had and got all the info I could from them about which doctor's they use and their experiences and advice. That is all I have that is really in relation. GL
Although it's not the same diagnosis, I thought I would offer the little advice I have. My goddaughter has Down Syndrome, and her family has found great support in a local Down Syndrome organization in our city. There is usually a national organization that can offer general support, and many cities have their own offshoots to support individuals in their community. I would google muscular dystrophy to find the national organization, and their site may lead you to local resources. I would also run a separate search for "muscular dystrophy + your city and state" in case there is a group not affiliated with national.
As far as specialists and support, the local organization connected her with parents that could talk to them about their experiences. They also offered advice as far as early intervention, names of physical therapists, pediatricians, etc. Having other parents to talk to about these things helped them tremendously.
Sorry I can't be of more help. Keep reaching out for information like you are. GL to you.
edit to add:
Here's the MDA site. https://www.mda.org/ You'll see a box on that page to enter your zip code for the nearest local office.
Here's a site focusing on family support. https://www.mdff.org/
I don't know anything about either one of these, but I figured I could start the search for you since you have enough on your plate. GL
Bubblegum Explosion
Here's a link to the MDA site where you can find a local office. I would think they could put you in touch with other parents, support orgs, etc., in your area.
https://www.mda.org/locate/
I'm so sorry you're going through this. Good luck with everything.
Hey there, I know you're probably very scared and upset. I wanted to share with you my colleague's story-- he has a son who actually attends our school and is a senior. He has MD and I *never* would have known. He's an athlete and popular and looks completely healthy. The only reason I found out is because he is having surgery in his feet to correct a muscular problem in his feet / calves. So I hope that provides you with a story of hope and certainty that DD can live a totally great life!