Mia
  • Female
  • New Milford, CT
  • United States
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  • Cheryl Markey
  • Mary Sahagun

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overweight kids with DMD

Started this discussion. Last reply by Mia Jan 3, 2009. 5 Replies

 

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Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Sean
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
New Milford, CT

Comment Wall (7 comments)

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At 10:56pm on April 1, 2009, Mary Sahagun said…
Thank you Mia, we had a beautiful day doing all things Kenny.
At 3:56pm on February 26, 2009, Mary Sahagun said…
Oh, I wanted to add...EKG's didn't show anything for Kenny. When he was in the ER and in total heart failure his EKG was reading normal. A chest xray is what showed them that he was in heart failure... very strange.
At 3:50pm on February 26, 2009, Mary Sahagun said…
Kenny's ejection fraction was at 14% for two years prior to his passing. At that time it was all of a sudden and was a shock! He was doing well, never sick, never any signs of fatigue, no headaches, nothing! Doctors marveled at how well he looked and acted. Still for the next two years he was doing well and it was a shock again because he went for two years on 14% EF.

It has helped me to be able to share Kenny's story and hopefully it can help others. Thanks for your kind words.

Mary
At 2:16pm on February 26, 2009, Mary Sahagun said…
Hi Mia,

No problem, I can tell you it is important to keep a close eye on his heart functions....Ultra Sounds and MRI's. I believe heart meds introduced as maintenance are helpful. Kenny's ejection fraction was 11%, his heart was working so hard and sadly the end result was heart failure. Some signs he was getting into trouble were...swelling in his ankles and feet, gagging to the point of vomiting. The hard part is that these boys symptoms are sometimes masked. Kenny always said he felt fine and he looked great so it was always hard to tell just how sick he was. Trust your gut, get the best care possible and pray. Live one day at a time and try not to look to far ahead as it will spoil the present day. God Bless you and your son.

Mary
At 3:04pm on February 24, 2009, Joanne Keeley said…
Mia! I don't understand all of it- honestly it scares me...
I go to Dr. Brian Tseng at Mass General. Takes us 2 1/2 hrs and I love his entire staff. I love Brenda but the travel is over the top. Wyatt is very uncomfortable with his compression spinal fractures and we are in and out
of the car with him... The nurse there is Cindy and her # is 617-643-2063 direct line... They have been great with us- let me know what you decide. We are on our way back there on April 13-14 for a full head to toe check.
Please be in touch- I work M-W-F. Call me Thursday if you can or call any evening! 312-9805. Take care Mia!
At 10:06am on February 24, 2009, Joanne Keeley said…
Are you sure that you didn't get my messages back?? Did you change you e-mail??? I definitely answered and offered to meet anytime and remember wondering why I hadn't heard back. Things have been hectic here too. What's happening with Sean? I'm not happy with Wyatt's status either but Sean is older--- what's going on???
At 11:13am on December 16, 2008, Joanne Keeley said…
Mia! How are you- I never heard from you about the chair...
I didn't realize that you see Dr. Wong!
How has Sean been doing? If you get a chance give me a
call...
Joanne
 
 
 

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