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 Kelvinsmom - Michelle on August 13, 2008 at 12:40pm
The times of crying do get better, but with that said, if you read writings like you just wrote, it makes me sad again, especially some of the poems on here. After getting over shock, I like others on here, realize, that we do need to move on the best we know how and help raise monies and help make DMD known and to get the best treatment possible today for our sons. There is a lot of hope today, more than ever and we just need to live each day praying that it will happen for our boys. Michelle
Comment by Lisa Tepper on August 13, 2008 at 11:49am
Hi everyone,
My name is Lisa and my son Brad was diagnosed last November 6th. That diagnosis date is one you never forget. It is the biggest before and after of your life. Before Nov. 6th everything was pretty great and I looked forward to watching my boys grow up. And now I just want time to stop so his condition doesn't worsen. He will be 5 on Aug. 23rd. We were shocked when the dr told us. We just thought he would need some physical therapy. He couldn't jump or pedal a tricycle. He didn't go up steps very well. He didn't run as fast or climb as well as other kids. I knew something was wrong but I had no idea it would be so serious. I still cry sometimes. I couldn't write this without crying. But I don't cry in front of my boys (our youngest is 2 and thankfully doesn't have DMD). I don't won't them to have a sad mommy. I want them to have happy memories of fun family times together. But still it is hard for me not to be depressed. It is something I am struggling with. Hopefully it will get easier. I am praying for a treatment or cure that will set all our sons free from this.
Comment by Janet Moses on July 14, 2008 at 6:54am
My Grandson Logan was diagnosed with DMD about 2 weeks ago. We live near Kansas City. He will be 4 on August 5. I also have a hard time making through each day without crying. We also noticed Logan had problems with stairs and keeping up with others his age, but since he is small for his age we thought that was why. I have hope and faith that our children and grandchildren will be cured.
Comment by Regina on July 10, 2008 at 11:37pm
My son Jordan was diagnosed 3 weeks ago, just short of being 6 1/2. I still don't know if I am a carrier. It's almost surreal to look at these postings, b/c they all sound like I could have written them! My son has always toe walked and bounced around-- so much so that he was tigger for his first Halloween, b/c he loved to bounce. Now that they have told me, I can see how he struggles when climbing, but he has never complained, and he can run all day and keep up with his friends. He was always the slowest on the soccer field, but we just thought it was b/c he is so small. His Father and I are both under 5'6", and I wouldn't have really expected him to run as fast as the bigger kids. Right now he's running and riding his bike and scooter. If it wasn't for his slight difficulty with stairs (which he never articulated, and I just noticed after realizing his 4 yr old sister didn't have the same problem), I would never have thought anything was wrong. I'm still waiting for the day when I can get through w/o crying, but at the same time, I thank God for every good, happy, day he is having right now.
Comment by Aimee Ealy on July 10, 2008 at 7:44am
Jill-

I felt the exact same way after Liam's diagnosis. I remember thinking, "how can the world keep going as usual when my heart is breaking?" But with 3 little boys to take care of, I couldn't just stop. One night at dinner, my older son was playing with Mr. Potato Head and opened up his trunk backside, and a rolled up piece of brown Play-doh fell out. We all started laughing hysterically and of course the boys said "Mr. PotatoHead pooped!" It was in that moment I realized it would be okay and life could go on. Thank God for little boys!
Comment by Aimee Ealy on July 10, 2008 at 7:35am
My son Liam was just diagnosed in October, at 3. He will be 4 in August. He has 2 brothers, almost 6 and 2 1/2. Although we have opted not to test our other two boys, the oldest is fine and would have showed some signs by now, and our youngest is so phyically advanced for his age, we don't think he has DMD. I have found out that I am a carrier. I am glad we did not know this until after we had our youngest, or we would not have him now.
Comment by Jennifer Collier on June 24, 2008 at 3:38pm
Hello - I am Jennifer and my son Ryan was diagnosed with DMD on May 29, 2008. At the beginning of last week, I found out that I am a carrier of the disease. The beginning of this summer hasn't been too great! Hope it gets better!!
Comment by Jill Keenan on June 21, 2008 at 7:36pm
Connor's Dad: I had a love/hate feeling with the pediatrician who first diagnosed Wyatt with MD. Her office is near our home and I would go out of my way so as not to pass by there. She is a great dr. so I didn't want to change but boy was it hard to go back to that office and see her--luckily is was only 3 wks ago, so I've had time to "adjust!" You live in Houston, so there is no way to never see an oleander--they are everywhere, eh?
Comment by Connor's Dad - Brian on June 21, 2008 at 9:58am
Our son Connor was diagnosed 1 month shy of being 2 1/2 on May 22, 2008. We took Connor to the emergency room due to repeated vomiting at bed time and our fears that he may have ingested an Oleander bloom and put an Oleander twig in his mouth. The blood tests revealed a CK level of 30,000 and after an ambulance ride to Texas Children's Hospital in the Houston Medical Center and another blood test that confirmed the astronomically high CK levels the ER Doctor asked if Muscular Dystrophy ran in our family. Our lives changed direction on a new path on Thursday May 22nd just like it changed on Thursday December 22, 2005 when Connor and his fraternal Twin Austin (non-DMD) were born.
I pulled all the Oleander plants from our yard and gave these plants to family members who do no have young kids, but we will always remember Oleander as this fateful plant gave us a head start in helping our son with the biggest Challenge of his life.
Comment by Jill Keenan on June 7, 2008 at 2:03am
My son, Wyatt, was diagnosed 3 wks. after his 4th b-day. Oct. 15. 2007 will forever be D-day for me! (Unfortunately it is my sister's b-day as well and she lives close by so I can't really blow her off ;) Now I can see the signs ("muscular legs," occasional falls, endurance, the way he hops and goes up stairs) but the diagnosis seemed to come from no where. I took him in b/c of his waddling gait--wasn't concerned in the least; figured he might need a bit of PT to fix the gait. If only, huh? So, here we are 7 mos. after D-day, and I have found that the sun still shines, even though for a while I wasn't sure if I would ever, ever see it! I never knew my heart could literally feel so heavy. It has gotten "better"--still a roller coaster, with the highs and lows, but the highs definitely out number the lows! It's a double-edged sword and bittersweet, but all the hugs and kisses from my blue-eyed boy make the clouds go away!
 

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