Resources

Medical Reference:

NLB – http://ghr.nlm.nih.gov/condition/long-chain-3-hydroxyacyl-coa-dehydrogenase-deficiency

Family Support:

Fod Support (make sure you sign up for the discussion group here so you can talk with other LCHAD families)   - http://www.fodsupport.org/

People with LCHAD

Zack & Abby (My Children) – http://www.lchad.com

Adam – http://www.adamslchad.com/

Additional Family Stories – http://www.fodsupport.org/family_stories.htm

  1. 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.

    • 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.

    • Doug
      So glad to hear these stories. Our son, John, was diagnosed at age 4. He is a typical, out of control, 9 year old. He also plays football and baseball. I had an emotional day today. We got the results of his baseline ERG and it shows some abnormalities. His yearly eye exams have always been perfect. He has never complained of any eye problems. Any encouraging words you have? John has his own mutation of LCHAD. One common and one of his own.
      Just curious if Doug has had an ERG and if things have been okay. I am really having a difficult time with news like this.
      Thanks so much…Tina (mom)

      • 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.

    • John GIangrande

      Hi there Doug

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

    • 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.

  2. It seems like you guys have managed their care pretty well!! Do you like the Bard? My LCHADer, 2.5, has a mickey and we battle with balloon leakage. She is managing a lot better now, than she ever has. She is in preschool for the first time this fall, she just started eating a little bit PO, but juggling sensory issues and the pump so frequently makes it difficult for her to get hungry, but we are going to get there! Im super proud of how far she’s come. And its so nice to know older kids and their parents who have lived through it.

    • Abby is 2 now and has been on a feeding pump exclusively for a while now. She’ll taste almost anything and sit at the table and “eat” with us but won’t swallow anything. I’m sure this will improve with time. We do like the bard. Zack had a mic-key and the balloon always ruptured and it leaked.

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