Friday, June 27, 2008

Giving a 7 year old bad news

We have known really that DS is an EDSer. We've known a couple years now since his symptoms of popping/hurting/dislocating became prominent.

At his recent annual well-child check his pediatrician decided it was time the two of us go see the hospital's pediatric genetics department.

We went this morning. I was examined, followed by DS. There is no doubt left. He has extremely prominent loose joints.

They are putting together a packet for the pediatrician and the school. They have to understand that under no condition does he play basketball, soccer, football, or anything else that extends his joints. He can stick with running, swimming, and bicycling, with swimming being the best option.

I feel badly for DH, who was an excellent football player and scouted by the pros but couldn't go any further once they found out about his multiple extensive knee rebuilds. He dreamed of having a little boy take after him.

Thankfully though I think there is some comfort in knowing DS can still be a great triathlete! He is a great runner, a little Forrest Gump, and is a terrific cyclist.

So, not all hope is lost. Knowledge is power and at least we know how to prevent all the damage I did by doing all the wrong things growing up. He hopefully will be saved a lot of heartache and hurt.


  1. What of cures for it? Maybe in a few years they will have sufficiently screwed with our genome to smack diseases like that out!

  2. Keesha...Im sorry to hear that received the confirmation that your son is an Edser...I know how difficult it is to come to terms with how it changes their school and home activities. All four of my children were dx by Dr Francomano in MD just a couple of months ago. But as you said knowledge is power... I sometimes feel like the guinea pig for my childrens sake. Ive had a hard time feeling responsible for their dx's....but have realized that I have to show my children how they can do anything they put their minds to... I pray that the Lord blesses you with the strength, patience, and ability to support your son through these difficult times. If you ever need to talk..know that Iam here.....


  3. keesha am praying for your son you know now what he faces and you can work to protect him not do the things you did because you didn;t know and now are paying the price. he will make i thru as you will your strong and a wonderful friend, i am keeping you all in my prayers hugs

  4. While I'm sure you had your suspicions, finding out for sure had to be difficult. I'm so glad that your little boy still has so many athletic options. Having you and your family to encourage him to excel while keeping him in the best possible situations is ideal. I'm so happy that you all are on top of all this. ~Leslie

  5. I pray that in our weaknesses we find great strength ~ I had hip surgery when i was 2 years old. The doctor told my parents i would walk with a severe limp and wouldn't be able to play sports at all! Seriously ~ he would roll over in his grave if he knew that I was hiking up mountains, rapelled down mountains, ran 5Ks, and played soccer ~ Running,cycling and swimming are all tough sports ~ he will surprise all of you, for sure! Hugs ~ Lace