My daughter has MCAD Deficiency

Tangie - posted on 02/18/2009 ( 9 moms have responded )

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My daughter was diagnosed with MCAD Deficiency (Medium Chain Acyl coa Dehydrogenase) when the hospital did the newborn screenings almost 6yrs ago. Its was one of many on the screening panels. Its considered to be a metabolic disorder in which case she cannot fast. She's missing a fatty oxidation enzyme which allows you to store energy when you have gone without eating for sometime. In her case no longer then 10-12 hrs without food, bascially overnight. Special attention also has to be made if she's sick and continues to vomit and not keep anything down. In that case I would take her to the hospital and they would give her fluids with a double dose of sugar in it. Thank GOD she has only been to the hospital once for her disorder, she was sick and didn't want to eat. She's doing very well. Although, she does eat quite often and I'm wondering if her metabolism is burning twice as much because of the MCAD. She sees a Genetic Specialist once a year...will have to ask this year.

When I tell people of her disorder, no one seems to have heard of it. Just wondering if any other Moms out there have a child or children with MCAD.

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User - posted on 08/19/2013

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Just to let all of you know I have a 14 year old son with MCAD. He was born in 1999. He was diagnosed before newborn screening was in place because my momma gut feeling made me ask the doctors about the possibility of it. The only reason I even knew about it was that 10 years earlier my sister had a baby girl Rebecca who died at 9 months old. We didn't know she had it until after. Back to Sam my son, he has only had a handful of episodes with the worst being a case of the ROTA virus when we took a trip to New Orleans to visit family. He was in the hospital for the whole week. He was almost 3 at the time. Since then we have only been in for an IV about 5 and rarely has it been overnight even. I just want to encourage you to follow your momma instincts and learn all you can about this disorder.

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Valeriaromagnoli - posted on 05/06/2017

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Hallo to everybody. I am writing from italy. My daugther Marta has 5 months and gas mcad. I would like to speak and chat with you in order to know something more about this illness. My email address is mcad.malattia.metabolica@hotmail.com
Write me please. Thank you very much!!!

Athena - posted on 03/12/2014

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My son has MCAD. He was diagnosed when he was a newborn. His levels were the highest they have ever seen. He is now 6 months. I understand the stress, it really sucks, but he is my little guy and ill power through it. He had RSV and was hostpitalized just for overnight. Now he is doing really good. Still has a cold but he can get over that with the nebulizer. I hope everyone is doing good and good luck families. :)

Danielle - posted on 01/26/2012

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Thanks! It is hard to find people who know what you go through and the stress it has on the family!!

Jessica - posted on 01/26/2012

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im so sry to hear bout ur childs pain. i hope they can find something to help quickly. if eating is painful at times i would fins the highest carbohydrate juice to give between meals. their bodies with mcad must have high carbs. so a high carb would help alot on reducing an episode. best wishes to you guys! any questions or if u just need someone to talk to im here for ya

Danielle - posted on 01/26/2012

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Thanks Jessica! We are learning as we go for sure! She is having alot of digestion issues and we see the GI drs tomorrow. She might be dairy and or soy intolorent and may have reflux so it is a struggle just to get her to eat due to pain.

Jessica - posted on 01/25/2012

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My daughter will be 2 this March. She was diagnosed at 2weeks old. Up til she was 5mon old she had so many episodes. One episode we almost lost her. She suffers from brain damage from the episode. They ended up putting a g-tube in her which has been so helpful. This is a very serious disease. A helpful and useful website that has a lot of mcad information, diets etc is the FOD (fatty oxidation disorders) website. Just Google FOD support! That weboage is wonderful! Good luck to u and your little one

Danielle - posted on 01/24/2012

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My Daughter was also diagnosed with MCAD from the newborn screening she is 3.5 months and so far no hospital visits yet. Although, we came close when she got RSV but we made it through that!

When did you find out how long she could go before she needed to eat? We are still learning and figuring things out. Is there any info that could tell us?

User - posted on 04/16/2009

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My daughter (almost 4) also was diagnosed with MCAD with the newborn screening. She has been hospitalized four times for IV fluids. (All for viral illness.) Thank goodness it's almost been two years since her last hospitalization. My daughter eats like a bird, which makes it a bit more stressful for me. Not only does she eat so little, but she is soooo picky which makes getting her to eat so much more difficult. She has only a handful of foods that she will eat, but hey, at least she is alive and well! My son was tested and does not have it. All I know is I am so thankful for newborn screening otherwise my girl may not be here today!

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