Comments for Living with LCHAD

Comment on Zack Update 3/27/2007 by Erik

Erik — Fri, 21 Sep 2012 05:40:59 +0000

no I am actually the oldest my doctor has ever heard of with my disease. and sorry if I sounded rude when I posted my comment my sister just got her license and it hit me like a load of bricks. by the way isnt it rare for a family to have multiple children th LCHAD

Comment on Zack’s Story by andyweedman

andyweedman — Thu, 26 Jul 2012 03:38:15 +0000

I don’t think Zack ever really outgrew vomiting. He had surgery when he was about 7 months old that prevents him from throwing up. For years after he would dry heave but nothing would come out. Things are better now that he is 8. We have a daughter who is 1 and she throws up all the time. It is slowly improving but still is a daily occurrence.

Comment on Resources by andyweedman

andyweedman — Thu, 26 Jul 2012 03:36:33 +0000

That’s awesome Scott,

We are taking the same approach with our children. LCHAD definitely limits then but we let them participate in whatever they want. We work very hard at helping them recognize their limits and how to take precautions to prevent an LCHAD crisis.

Comment on What is LCHAD? by andyweedman

andyweedman — Thu, 26 Jul 2012 03:34:38 +0000

Hi Brenna,

That is horrible. I’m so sorry to hear about your mom.

Comment on Resources by andyweedman

andyweedman — Thu, 26 Jul 2012 03:31:09 +0000

Hey,

I know how you feel. Zack’s retinas are starting to show some pigments as well. It’s such a helpless feeling because even if you strictly adhere to the diet etc. long term affects like retinopathy and peripheral neuropathy are always a risk. Sorry I’m not much help! If you haven’t already I suggest you check out fodsupport.org. They run a fantastic family support group and thousands of members around the world. That is how I keep up with the latest and greatest concerning LCHAD and other FODs.

Comment on Resources by andyweedman

andyweedman — Thu, 26 Jul 2012 03:25:03 +0000

Hi John,

Zack had a Mic-key and Abby currently a Bard low profile button.

Comment on Zack Update 3/27/2007 by andyweedman

andyweedman — Thu, 26 Jul 2012 03:19:22 +0000

Hey Erik,

You’re not being rude at all. LCHAD is not a walk in the park. My wife and I have 3 children and two of them have LCHAD. There have been several close calls with Zack and Abby has had a lot of trouble already even though she is only a year old. Have you been able to find any other people your age with LCHAD? It might be cool for you to meet them.

Comment on Zack Update 3/27/2007 by Erik

Erik — Wed, 11 Apr 2012 16:35:54 +0000

sorry it was eighteen years just had my birthday

Comment on Zack Update 3/27/2007 by Erik

Erik — Fri, 30 Mar 2012 16:48:41 +0000

Not to be rude but I have been living with LCHAD for seventeeen years. And yes people should know about it. But you need to realize how hard it is on the older people with this condition. When I was his age I nearly died several times so be lucky he is young now when they know how to treat it better. but trust me he will care more about how it effects him when he can’t play a lot of sports or if it effects his eyes and he can’t drive. Just remember this

Comment on Resources by John GIangrande

John GIangrande — Wed, 07 Mar 2012 21:49:47 +0000

Hi there Doug

If you don”t mind answering do you have a feeding tube( MIC-KEY Low profile) ?