I wrote you an e-mail (actually a couple) but I'm not sure if you received them. Thought I would just reply here. If you have not gone to see Dr. Mendell yet let me know. Maybe we can meet when you come down to see him. I don't think your as close to us as I originally thought.
I just noticed you are from the area. You wrote to someone saying you were going to be seeing Dr. Mendell. My son Derek see's Dr. Mendell. We live in Lewis Center. If you would like to get together send me an e-mail at firstname.lastname@example.org put PPMD in the subject line so I don't delete it.
Hi Amanda: No, don't worry too much about the far future...things are changing all the time, so just enjoy today. It's hard because time goes by so fast. It seems like just yesterday that Nicholas was diagnosed and the day when he would start to show major signs of DMD would never come. Unfortunately the day does come pretty fast. My son started steroids when he was around eight because he was in the UCLA Albuterol Clinical Trial and we were also advised by our Dr.'s to wait on steroids until he couldn't get up from the floor. Thankfully we didn't wait that long, but I definitely would have started him at four if I had been given better advice and knew more. He has all the typical side-effects now, but he is still mobile, which he may not be had he never been on steroids at all. He was on predinsone in the beginning, but due to my Dr.'s unfamiliarity with DMD, there was alot of shuffling of schedules, and in the end I put him on daily Deflazacort. It is supposed to have less side-affects, but insurance will not cover it (and I'm not sure about the side-affects...my son has gained 30 pounds in three years, not grown more than two inches, has the very round face, and a terrible temper!). But I would still have put him on steroids right away despite all that. Just remember to enjoy your family as much as you can...even though everything you do may seem to have a cloud hanging over it - there is so much hope for your son! My email is email@example.com Take care,
Hi Amanda! Just wanted to say welcome! And don't worry...as you go along, you will somehow always figure out what to do next - it just happens. My son was diagnosed at 4 - he's almost 12 now. It's amazing how much you learn - PPMD is the best place to find out what you need to know. I left you a comment yesterday, but for some reason I don't see it on the wall (I'm not too good at this yet). Your family pictures are beautiful!
Oh to have to live with this and live in OH!!! Except missing my LSU TIGERS, that would be my dream. We travel to OH 2x/yr to see Dr. Wong. You are so lucky! Email Karen.firstname.lastname@example.org to get your appt set up! Dr. Wong is awesome, amazing, wonderful!
I am sorry you have had to find us, but glad you did! We will help anyway we can, just ask!
Just wanted to shout out a welcome--you have come to the right place! Although, I am very saddened to hear of your son's diagnosis. I don't know how much you have read on this site, but lots of folks here, including myself, go to Dr. Wong in Cincinatti, so it looks like you are in the right state! She is a specialist in DMD and one of the very best in the country. She has a whole team of specialists to care for DMD boys. My email is email@example.com if you would like more info. I am new here as well--preliminary diagnosis in Oct. 07, so I certainly don't know it all but can help point you in the right direction. (Word of caution--don't believe all you read about DMD on the internet. It is a devestating disease but our guys are living much longer than in years past. And there are potential treatments on the horizon.) I would be happy to chat with you as I know what you are going through.
Hi Amanda! I just viewed your photos and you a beautiful family! How old is Cade? When was he diagnosed and what led to you bring him to the doctor? My daughter, Rhiannon Traigle, and son-in-law, Ray are both members of Parent Project as well as me and my husband. (My husband and I just joined yesterday.) Rhiannon and Ray's son, Riley, was diagnosed with DMD on January 24, 2008. His pre-k teacher felt that Riley might have a problem with his hip muscles. He was always lagging behind the other children when they would walk to the playground or cafeteria. She had the school's physical therapist evaluate him and from there, our lives changed. I know that you are going through a very painful experience at this time. There has not been a day yet since January 24th that I have not cried for my Riley. I am optimistic though, that we will see great strides made in treating DMD within the next few years. I feel that there is hope for our angels! As a member of Parent Project you will receive support, information, guidance, and resources. Rhiannon has made many friends through P.P. and has learned so much that will help Riley. If you feel you need to talk, cry, or vent, I am an excellent listener!
Just wanted to say Hi and Welcome. I am glad you found us. Everyone is like family here. Ask anything and we will answer your questions. As Danielle said it does get less rough, my son Craig was diagnosed in Feb. 2008 so we are kind of new to here too. Again we are all here for you.
Talk to you soon