Comments for Living with LCHAD

Comment on Resources by andyweedman

andyweedman — Thu, 01 Sep 2011 15:27:50 +0000

Hi Doug,

Sorry it took so long to reply. My daughter Abby was born in February with LCHAD so things as you can imagine have been busy! It is so great to hear from other familes affected by LCHAD especially those with older children. It is very encouraging to hear that if managed LCHAD is just another life obstacle you have to deal with and adapt to.

We are taking a similar approach with our children. We are not letting LCHAD define our children. LCHAD is an ever present fact but we want them to live their lives just like any other child.

If you’d ever like to do a write up of Doug’s story let me know. I’d love to post it to share with other familes.

Comment on Zack’s Story by andyweedman

andyweedman — Thu, 01 Sep 2011 15:17:10 +0000

Hi Ashley,

Zack had surgery to perform a nissen fundoplication to help with the reflux. While it prevented him from throwing up he started dry heaving and sometimes it came out the other end. Over time the dry heaving went away but it did take a while.

When was your child born? We had our third child on 2/4/11 who also has LCHAD. She is between 10 and 11 lbs and throws up at least once a day. She is on portagen formula with added polycose, carnitine and prevacid (reflux medicine).

Comment on Zack’s Story by ashley blairsville ga

ashley blairsville ga — Wed, 31 Aug 2011 16:53:36 +0000

hi my name is ashley i am 27 i also have a child thats been diginosed with lchadd i still dont completlely understand all of it just that she has to eat every four to five hours she is seven months now and she weighs 11 pounds she seems to be doing well as far as being alert and playful coo’s and all that she still vomits alot though with her milk as i ask her doctors about this they just give her that stuff u mentioned they have gave to ur son did he grow out of the vomiting or was something else needed in order for him to hold down his milk ? this all is very scary to be honest but i would not make it with out her in my life and need all the advice i can get thanks ashley!

Comment on Resources by scott schulte

scott schulte — Tue, 10 May 2011 09:17:25 +0000

Our son Doug is a sophomore in a high school. He is a strong, active LCHAD teenager. He has struggles but overall does quiet well. He plays football and earned his varsity letter in wrestling this year. As a 9th grade he placed 4th in the state of Utah in junior high state wrestling and captained their national youth football title team. I do not tell u this to brag but rather because as a coach I was devastated when I was told my son would never play sports, etc. We decided at a young age we would allow Doug to live HIS life and set aside our fears. I am glad we did so and we all understand the risks, but he is living, not just existing.

Hope to hear from you.