I Have Vlcad Deficiency

A VLCAD Deficiency anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with VLCAD Deficiency. You're not alone. 30 People

    Granddaughter With Vlcad

    Hello,My 2 1/2 year old granddaughter was diagnosed with VLCAD at the newborn screening test. She was put on a lowfat formula within a week of being born.It is a very scary thing to hear, because there is very little info out there. Although she is very healthy and bright, she...
    coolchick22 coolchick22
    46-50, F
    2 Responses Apr 19, 2011

    Finally Diagnosed

    Timeline: Feb-Mar/2010: Constant headaches, daily. Living on Excedrin, but never fixed it. When they got really bad, wrapped long sleeve shirt around my head over my eyes and tied it as tight as possible sitting reclined in recliner. Never saw doc, and they went away completely...
    stm121184 stm121184
    31-35, M
    4 Responses May 26, 2013

    Preparing Family For The Vlcad Low Fat Diet

    So far my son is 5 months with vlcad. Things are going good. He takes pregestimil formula with half breast milk every feeding. The formula taste so terrible this was the only way he would take it. I refused to stop breastfeeding him. As a family we are now preparing to all get on...
    Sfleadams Sfleadams
    26-30, F
    Jan 25, 2012

    Whole Life Living With Vlcad

    I am 24 years old. I was diagnosed with lcad when i was seven. And later diagnosed with vlcad when i was 16. My sister and brother also have been diagnosed with vlcad. Before i was my first diagnosis i had been in the hospital a few times only for the doctors to say they didnt...
    mel3396 mel3396
    26-30, F
    2 Responses Sep 14, 2013

    Thinking of leaving this forum

    as don't seem to have much replys from VLCAD people but if anyone does message regarding VLCAD and I don't reply straight away, I do have a face book page along with some others with VLCAD who have set up pages but please join me on there if you feel you are alone with VLCAD...
    Gemh28 Gemh28
    36-40, F
    Apr 5, 2014

    Vlcadd Too....

    My son was diagnosed with vlcadd at birth but has been doing very well since. Even When , he went without food for more than 7 hours,he was fine .Will be good learning experience for me to hear form other people on your experiences with vlcadd, thank you.
    morocha19 morocha19
    26-30, F
    2 Responses Feb 16, 2011

    18 months since diagnosis of VLCAD

    and I'm having more relapses than ever, the cold weather lately is having a big effect and my hormones too. I feel so alone with this and really could do with a VLCAD buddy to get some diet tips etc from and generally to support each other as this disease is rare and no cure...
    Gemh28 Gemh28
    36-40, F
    Dec 7, 2013

    Infant Vlcad

              Hello from Ontario Canada,our granddaughter has just been dianosed with VLCAD,She is just 13 days old. Because this is so very new our son & daughter-inlaw are having a very hard time.Is there anything that anyone can share...
    grammycbn grammycbn
    3 Responses Apr 19, 2010

    My Little Angel

    Fay from Kuwait .she daignosed with vlcad when she was two weeks .now she is turning 10 months .she is a lovely kid beautiful and active.now she is sick from the changing of the weather and I noticed that she wanna sleep a lot .I feed her every one hour drink her monogen then i...
    Ghalaro7i Ghalaro7i
    1 Response Nov 22, 2011

    My Baby Was Daigonised With Vlcad On The 2nd Day Of His Birth

    Hi there,My baby was diagonised with VLCAD on the 2nd day of his birth and today he is 4months and 12 days old and he is doing fine,but the only thing is keeping him up with his monogen feeds and as he doesnt take his bottle,cries and wriggles if offer a bottle but since last 2...
    karteek09 karteek09
    1 Response Feb 11, 2012

    Baby With VLCAD

    Hello, I live in Greece. One friend of mine has brought to life a baby who has been diagnosed with VLCAD. The baby is a 26-days-old boy. He has been tested when he was born in a clinic and the doctors found he has VLCAD.. His DNA has been sent in Barcelona, Spain. The...
    marija567 marija567
    10 Responses Feb 18, 2009

    Adult Onset Vlcad

    I am a 34 year old female. I was diagnosed with VLCAD when I was 25, but had been experiencing symptoms from age 20. For me, my episodes consist of severe muscle cramping (rhabdomyolisis) and myoglobinuria. The cramping lasts about 2 days followed by 3 days of fatigue and feeling...
    MEG79 MEG79
    36-40, F
    5 Responses Apr 24, 2013

    Cookies For Vlcad

    Hi everyone. My son is 18 months and of course he loves sweets and cookies. I found a recipes that is low fat and super delicious. Here it is.. 1 cup of oatmeal 1 banana Optional: Raisins, Craisins, and cinnamon amount your choice, adds natural sweetness to the cookies. Preheat...
    Sfleadams Sfleadams
    26-30, F
    1 Response Feb 16, 2013

    my baby is 3 months and she had an metabolic

    crises and had to have two blood transfusions and to hart surgeries in one has anyone been through this if so how long was the recovery process what did you do for comfort thanks so much
    littlemissfosha littlemissfosha
    1 Response Jul 4, 2015

    Vlcad diet is sooooooooooo hard!!!

    I just recently got diagnosed VLCAD...I became paralysed from hips down for over half a year I was in a wheelchair, I have al sorts of tests done on me but they couldn't figure out what I had, I was 19 at the time I went through a lot for 2 years I'm 21 now and the DR just...
    Kuri786 Kuri786
    18-21, F
    5 Responses Jan 16, 2013

    18 Months Old, Vlcad And A Virus

    We had our first scary moment with vlcad. It started around 3pm on a Monday, Ethan started to run fever. At the same time, the fever a low fever, Ethan was also teething. I gave him some ibuprofen, and waited to see what would happen next. Around 7pm Ethan's fever came back with...
    Sfleadams Sfleadams
    26-30, F
    2 Responses Feb 16, 2013

    Vlcad Daughter

    Our almost 3 month old daughter, the youngest of 5 children was diagnosed  at birth. At 23 days old she caught my cold and had her first crisis, which led us to isolation at CHEO. I don't think i have ever been so scared in my life, up until then it was words on a page, just...
    richmirefamily richmirefamily
    7 Responses Aug 8, 2010

    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
    4 Responses Jun 10, 2011


    Hi I've just found this site and was diagnosed with Vlcad Deficiency only 18 months or so ago? This could be a bit long and if so I apolgise but as I don't know of many people...if any with this deficiency I'll give a histroy of my symptoms and what eventually led to the...
    Saulhudson Saulhudson
    46-50, M
    10 Responses Feb 22, 2010

    My Son Was Diagnoised With Vclad At Birth But Has Been Doing Very Well

    My son was diagnosed with VCLAD at birth but has been doing very well since. even when he was down with high fever, he went without food or drink for more than 10 hours, he was fine. Will be good learning experience for me to hear form other people on your experiences with VCLAD...
    healthymama healthymama
    Feb 7, 2011
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