My son was Diagnosed with Duchenne January 6th, if anyone can give me information I would greatly appreciate it. I feel quite overwhelmed with it all, but I really want to get the best care for my son. We are going to a MDA clinic at Valley Children's Hospital at the end of feb, and if anyone has good advice for me to ask the doctors that would be helpful too!
Hi christina My Name is Leeandra And I live in Northern Ca. (Hollister). My son is 5 and was diagnosied 1 1/2 years ago. We have a group of parents that meet and our a VERY strong support, our group is Called F.A.C.E.S and it is through PPMD. The next meeting is February 12th in Sacramento at Shriners Hospital. I am not sure where you are located but we have many families throughout CA that are a great support system.
Please know that your feelings of being overwhelmed are very normal, this is a lot to take in! I am here for you anytime. All of us parents also have a LARGE network on Facebook as well as here.
Thanks for the information, I live about 4 hours south of Sacramento so I would not be able to make that trip. When your son was first diagnosed what treatment plan did the doctors do for him. I have read several things about Idebenone and am planing to ask the drs at his Feb clinic with MDA. MY son is 2 and really just caught it by blood tests that showed abnormal liver enzymes, and then had a whole work up of the liver- everything is fine with that, and that is when they moved towards the muscle enzymes. The things that I notice with him is that he struggles a lit bit more to climb and get out of chairs compared to his brother. Right now I am waiting to be tested if I am the carrier and if so my three year old son will also be tested. Are you the carrier?
What were questions that you first asked your doctors regarding your son's care that maybe would help me out too.
Thanks so much
Here is my number (831)524-0748 or my email firstname.lastname@example.org and we can go over it if you want. I am not a carrier my son is adopted and we are not sure if his bio is a carrier. I have a list of my initial questions still saved.
Call me or email me ANYTIME
First off I would like to say that I am so sorry for your sons diagnosis. It is a great thing he goes to MTU, but wondering why the ortho doc is suggesting you don't go to MDA clinic. Early intervention is key and you can learn more if you go, baselines are may also help. My son is 5 and had baselines at the age of 4 which has helped us to see if changes have already begun. Every Duchenne child is different but I don't see it hurting in going to the MDA clinic now. The center for Duchenne at UCLA might be close for you and a great resource. I don't want to sound pushy, just my suggestions. Hope all is well with your boy and we are all here any time you need any of us. We are also on FB and have many discussions going on which include many specialist in the Duchenne community. Best of luck to you.
Luci Nilson said:
My son was diagnosed just before his 3rd birthday last Fall through a random blood test. Genetic test confirmed DMD. My test confirmed it was sporadic NOT genetic. Still waiting for the final results of the muscle biopsy. Our lead Ortho doctor is monitoring hime every few months, but does not want us to go to the MD clinc -which he heads - yet. Not sure if this is a good thing, or not. He does go to MTU twice a week. Interested to hear from parents what we should/shouldn't be doing...