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  a LOT of information. The second night there alone (with my new baby looking like an octopus with all theses wires and tubes) i broke down and cried, reality had sunk in. Now it is on to lifestyle and diet changes in our house. We are cleaning every room from top to bottom and researching diet plans. The search for other families close to us has hit a higher gear in hopes of meeting and seeing what lies in our future.
richmirefamily richmirefamily
36-40
7 Responses Aug 8, 2010

Hi please join our organisation we can support you, I have vlcad myself and set up a support foundation. you will find us on facebook called the metabolic foundation. thank you.

I am a dad of a 3 month old child with vlcad she in critical condition doctors are unsure of the disease can you help with any information that will help if so thank you

Hang in there. I'm 36 and have VLCAD. There will be struggles but fight on!

Never give up the hope,I really do believe that in the future,the missing enzyme would be created which would make the disease to treat basically. Then he just need to take one capsule everyday.

Hi - we have a daughter that was diagnosed with VLCAD at 3 months. She is now 16.

we are on Facebook if you want to join, and have a great support group, one of the families is from Denmark as well. We're lucky for now she doesn't need the MCT oil but she will be on a heart healthy lowfat diet. She is doing well right now, but cold and flu season is on it's way.<br />
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We fight and smile and pray! Good luck to you too

Hi i wanna wish youre family and you the best . and that you find a way to handle the situation in al kinds of way, i cant give you any advices cause i've got the disease from 15 th and i knew it when i was 27 so i know it for 4 years now , ive got a mct dieet (i have to use a special mid chain oil) witch i never read or hear about in the american and english forum/ groups so i dont know iff its availeble and and usefull in youre case but again goodluck for all of you i hope that you will manage .. <br />
keep fighting and smiling

wish you and your family the best as well,my 2 years old baby also have the VLCAD problem,could you tell which kind of Mct diet are you following? Now I just take the doctor's suggestion to buy the Ceres MCT oil produced in Germany instead of the normal fat.Do you also have other medicine to take ?