Early Years (diagnois-age 6)

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Early Years (diagnois-age 6)

Members: 174
Latest Activity: May 16, 2018

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Study of DS-5141b in Patients With Duchenne Muscular Dystrophy

Started by Archana Maringanti. Last reply by Jay Griffin Apr 6, 2016. 1 Reply

Which exons are to be skipped for deletions in exons 46-47 ?

Started by Archana Maringanti. Last reply by Archana Maringanti Mar 29, 2016. 2 Replies

Exon 50 deletion?

Started by Corinne King Mar 5, 2015. 0 Replies

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Comment by Candace Miller on May 1, 2010 at 9:28pm
I am sorry to hear about both of your sons. I know how you feel!! I have a 5 year old with DMD and his little brother born on Feb. 11, 2010 was diagnosed at 10 wks old with DMD as well. It's so hard especially when they are so little because there is nothing to do for them yet. Just sit and watch and wait for symptoms to show up. I am going to start stretches and everything and make it a game for him as we work with his brother. There are no local support groups for us either and I don't know of anyone else within an hour of our town dealing with this diagnosis.
Comment by Veronica E. on November 19, 2009 at 11:19am
I'm sorry to hear that both of your sons have Duchenne. I had three uncles with Duchenne, and I think having each other was a great comfort to them. And while it's so scary to think about the future, but my uncles who basically had zero treatment for Duchenne -- no steroids, no stretches or PT, no special wheelchairs or even particularly comfortable beds -- really loved their lives and were, overall, happy young men.
Comment by Marian Lamberson on November 19, 2009 at 9:29am
take it step by step and try not to think too much into the future. the braces for my son was fun. I am sure there were parts of him that were scared or afraid, but he seemed happy. they asked him what his favorite hockey team was and printed that on his braces. a man with 2 boys with dmd told me in my darkest time that when it comes to DMD, looking to the future is senseless, the obstacles aren't nearly as traumatic as when thought is put into it beforehand.
your son will be okay, you seem to be a wonderful mum and they are lucky to have you. take care, hope this helps...:)
Comment by Courtney Price on November 19, 2009 at 9:02am
Alot has happened in this last year with my sons. My 4 yr old was diagnosed with duchenne and I knew it was fast progressing but he is now going to get fitted for braces. I dont know much about them because I have never known anyone who needed them. I have also in the last 2 months foung out that my 2 yr old also has duchenne. It is a hard blow, but i have found it harder for me because there are no support groups in my area, and I have never met anyone who has gone thru this.. I would like to try and find others that are dealing with this but I dont know hwere to start. if anyone would have ideas please let me know.
Comment by Candace Miller on October 19, 2009 at 10:47pm
Courtney - My 4 1/2 year old was just diagnosed with DMD in July 2009. He was going on and on about not wanting to go back to the doctor after he had the 6 vials of blood taken for the genetic test. I told him that his muscles were a little weak and he needed to go in to see the doctors so that they could keep checking his muscles and see how they were working. He refuses to really accept anything is wrong as he has "big strong muscles just like superman". I don't want to upset him too terribly. As he gets older he will ask more questions and I will give him more details but for right now I want him to just enjoy being himself and live his life as a "normal" happy 4 year old. He knows something is up and that he has to go to the doctor. He hasn't really missed a beat except for the tired 4 year old "But my muscles are too tired to go up the stairs mom". LOL I didn't know whether to laugh or cry the first time he pulled that on me. That's my wonderful little man and I wouldn't change him for the world. I say it all depends on the personality and what you are comfortable with telling him. I am taking it one day at a time. I know he will ask but I try not to think too hard about it. The more I think about it the more complicated the explanations become in my head and my son is the type that just wants to get to the point. He just wants a direct answer so he can process it and deal with it in his own way which usually means "Oh okay." and back to business. He's a strong boy and I just hope that I can keep his head up so that even when it gets hard he will keep looking up and keep taking things one day at a time. I hope this helps. I am sure every parent has their own ways of telling their children. This is my way based on his personality. You will find your way of telling your son too. I know there will be a day when it will be a burst into tears as he realizes the severity but I try not to think about it. It's taken a couple months of anxiety meds to get me to this point so it definitely hasn't been easy. (Especially considering I just found out a week ago that I am having another boy in February.) Hope this helped a little!!
Comment by Jeffrey Botwin on June 14, 2009 at 10:10pm
The initial explanation I gave to Ben is that everyone's muscles have a sort of "Jelly" in them to protect them and help them to be strong. I told him that his body doen't make enough of this "Jelly", and that is the reason for all of the tests and doctor appointments, so we can find some way to fix it. After a while, as his curiosity and interest led to further questions, I have givren him more information, and at this point, he knows that he has Muscular Dystrophy, he knows that his is called Duchenne, and he seems fine with tasking the steriods, vitamins and supplements with no resistance or difficulties. He still isn't aware yet of the long term consequences, other than the likelihood that he will eventually require a wheelchair. On long outings that involve extensive walking, like when we visited the National Air Museum, he was ok with taking rest periods in a wheelchair, although he wanted to still walk whenever and as much as he was able to. We all need to pray that a cure or at least a better regimen of extenders becomes available, but I really do believe thast the more they know and understand about what they have and what it does to them, the better they are able to cope with it.

Keep the faith!
Comment by Courtney Price on June 13, 2009 at 10:16pm
thank you for your input..i tried to talk to him, and though he still doesnt seem to understand i will keep trying..I think your right, i think he will be better knowing now before it progresses any farther..
Comment by Jeffrey Botwin on June 11, 2009 at 10:37pm
I think that while it is difficult and even heartbreaking to discuss with our sons, we need to at least have them understand what is going on within their individual capacity to do so. While we certainly don't necessarily want to go into detail about the gravity of their future situation, the level of frustration seems much lower when they understand that there are real reasons for what they go through, and for their limitations. At least this is what I have found.
Comment by Joshua's mom on June 11, 2009 at 4:27pm
We found out Joshua's diagnoses when he was 6 months. It became part of our regular conversation. We started by telling him about his disease and what it does to his body; how it starts from his legs and works its way up his body; and someday he may need to use a wheelchair. He was about three when we told him all of this. I'm glad we did though because when he was asked by other kids why he was so slow; why he climbed stairs the way he did; and why he had to take medicine etc., he was able to tell them... and his teachers. They are sponges and they understand quite well without it making them upset. The more they know about their own bodies and why, they less confused they become. But that's my opinion.
Comment by Courtney Price on June 11, 2009 at 2:53pm
Hello. My son is three and was just diagnosed about 6 months ago. He has not yet been started on anything but goes back to the MDA in about a week for his check up. He doesnt understand what is going on and i am having a hard time understanding it myself. I noticed little things with him climbing up stairs and having trouble getting up from the floor. I had talked to his Dr about it so she decided to do a test to see if he had any inflammation in his muscles. She called a few days later and then it was neurologist apts and tests to find out what type he had. Finally after the long wait and searching what it meant and reading about the different types, the neurologist called for an appointment for us to hear the results. I was hopeful it wasnt gonna be anything serious, then the dr told me it was duchenne. It is hard and has been hard. I havnt yet tlked to him to explain what he has. Im not even sure if he would understand. Does anyone have any advice on how to talk to him and try to make it a little easier to explain? Many thanks!!
 

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