I am a stay at home mom. I enjoy scrapbooking and painting.
About my family:
My husband is an electrician apprentice. My son Michael is a very talkative and inquisitive three year old. My son Mac is a cute little two year old. Both boys enjoy keeping their mother on the run. :)
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Armona , Ca
Comment Wall (6 comments)
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My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.
Please let us know if you would be willing to speak with one of my colleagues or I in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.
Please let me know if we can contact you at your convenience.
Thank you for your time and cooperation in this effort.
I am so sorry for your news. Welcome to the Duchenne community. Everyone here understands and you are not alone.
My son Levi was 23 months old when we found out. He is now 6 yrs old and doing well. I feel "lucky" that we were able to find out when he was so young. We've been able to adjust and develop a great group of supporters. As it turns out I am a carrier, that was one thing that we found out within the first month. We have 3 other children who thankfully do not have DMD.
Getting baselines are important though every boy progresses differently. You may have to insist on baselines as they will tell you that he is too young. You will be given a lot of advice you are your sons advocate make the choices and decisions that fit your family.
You may want to ask about the leg braces, our Levi has been wearing them since he was 2 and it seems to help. There are also stretches that help. Massage therapy, swim therapy. Vitamins. Levi has been on prednisone for almost 3 yrs without any noticeable side affects, lately though we have noticed that his appetite has increased.
We see Dr. Craig McDonald at UC Davis and Shriners, up in Sacramento. (We have been able to get his leg braces there free of charge.) CCS-California Childrens Services are very helpful offering Physical Therapist & Occupational Therapy.
I don't want to overwhelm you with too much info but know that I am just up the way in Los Banos. A phone call away 408-710-9641. firstname.lastname@example.org don't hesitate to call.
Welcome Christina! We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - email@example.com
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.
I was trying to send a long comment under the CA families discussion. When Nicholas was first Diagnosied we asked for a referral to CCS for Physical therapy and Occupational therapy. Also he may need night splints right now and they are very expensive, even with Insurance so must of us in Ca us Shriners in Sacramento for the splints (they are on average $3000.) Ask about steroid choice, Prednisone or Deflazacort. Deflazacort is not FDA approved but has the lesser of the side affect compared to prednisone. you DO NOT have to use steroids. Ask for a copy of his Genetic report. CoQ10 is commonly used, we use Idebenone which is expensive and they are similar. Vitamin D3 is determined by labs. We see Dr. John Day at Stanford and Dr. Brenda Wong in Cincinnati. We opted for early baselines in Pulminology and cardio. We saw a nutritionist, ask for a referral. Our boys should be limited on sodium, sugar and fat. Not only are these important for when/if steroids are started but for the muscles and heart. One thing to remember is every Duchenne child is different just like every other child and just because one has a problem with speech or heart doesnt mean yours will. But early baselines and evaluations can help. There is so much going on in our community that hope is abundant. on Facebook we have a lot of groups that vary from supplements to education. All the Duchenne families know one another and unfortunately we have to travel far to see each other. But well worth the visits and its great for our kids to meet other boys like them. you can call me anytime, day or night. my email again is firstname.lastname@example.org or #(831)524-0748. I hope I could help, there is so much that you will learn and not all of it will apply to your son as each boy may progress different.
Hi Christina,sorry you had to join this elite group, but welcome.You will find an abundance of info and support right here.There is loads of research happening so keep positive.Your boy is quite young,so enjoy him.I would advise you to find out the genetic dna results ,or maybe you have them.Let me know if it is a deletion,duplication or point mutation .Knowing this lets you read up on relevant research.Lets you breath a bit deeper...A good healthy diet , swimming and low impact exercise are good at this stage. Try not to take on too much,can be very overwhelming.I admire you ,it was sEveral months before i could even read about it , but there is light at the end of the tunnel.
Read about health supplements especially idebenone and protandim on this site as well.