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My Son

My 9 month old was diagnosed with VLCAD and we have been learning how to cope with it. I dont know everything about it and would like any advice people can give me :)
kaycam19 kaycam19 18-21, F 3 Responses Jun 10, 2011

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Hi my son has vlcad as well diagnosed on newborn screening. He takes pregestimil formula with half breast milk. I pump all day but that's the only way he likes the formula. Vlcad so far seems not so bad with babies. If they get sick of course vomiting, diahrea, fever it's off to the hospital. The low fat diet concern come in when they start getting table food. We just decide that the whole family should diet for his benifit. Because my 5 year did not get it. Good luck to you and your family.

my 4 yr old had vlcdd they found out when they did the newborn screening. its hard sometimes which he can never try pizza french freis all the fatty stuff. he understands some of it but he would still try cupcakes etc. its very hard when we go out and eat. but we go to good gentics doctors at chapel hill nc he also has to take mct oil which helps him out his mediun chain fats which i mix it in his applesauce. im so glad i can write to other people who has this gentic disorder.

My daughter has been recently diagnosed with VLCAD on her 1st birthday after being rushed to hospital being unresponsive. She had numerous tests done to find out why she was not developing before this episode. She was born a healthy happy little girl but as time went by she began to deteriate for example holding toys at 4 months then at about 9 months not she also suffers from stiffness in her muscles which has got worse since being hospitalised. She has never rolled over, sat etc...since her episode on her 1st birthday she has lost her ability to swallow and we are not sure about her sight anymore. She is peg fed every 3 hours and I more than my ex partner am finding this very difficult to get my head around, lily is lovely and such a little fighter. But I would love to hear from other parents who are going through the same thing as I know this is so rare :)

I see this post is from 2011 but I wanted to respond just incase you see it. My Granddaughter has VLCAD and has been hospitalized more than 30 times. In spite of it all, she is AMAZING! My question for you is...Did the doctor prescribe L-Carnitine for your daughter? It really helps with the muscles. I cannot imagine where my granddaughter would be without it. Also there a FOD support Group. www.fodsupport.org, also they have a Facebook page for Living with VLCAD. Both of these sites are a great resource. They have a wealth of information! So many parents and grandparents with so much information. It may be of some comfort to you.

Take care!

Debbie