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 parents are waiting for answers and are very worried because this case is the second one in Greece!
Please let me know if you have the same experience as it would be very helpful to gather information and share tips.
Thank you in advance.

marija567 marija567
10 Responses Feb 18, 2009

my daughter is almost 3 years she had vlcad and is taking oil c7 a experimental oil, she is better but 2 years ago she was on the hospital for 1 month, this condition is so hard but god is big

My daughter is now 6 months old and we found out she had VLCAD when she was 2wks old right after we found that out she caught RSV and stopped breathing on me while i was holding her at home, she was then hospitalized for 2 wks she has to eat every 2-3 hours, We are still having trouble completely understanding this whole thing, Does anyone know of a Recipes for foods that kids can eat?

I am 22 years old and I have been dealing with VLCAD my whole life. Yes, it is the worst pain of my life when it hits me. I want to pretty much just die. But I will say that it is controllable. As long as I make sure I eat regularly and try not to get too stressed out about things (stress plays a big deal into it) I can usually avoid it. For me whenever I am having an "Episode" (what we call it) related to eating (sometimes I forget) it is easy for me to get the pain to go away sooner once I eat. Also living it it my whole life I can feel it coming on. But whenever I get an "Episode" related to stress there is nothing I can do about it except lay there and try to stop stressing about things, These are the most painful episodes that come on quicker and last much longer (for days). For the most part I can controll everything though and the only time I ever have to go to the hopital for this is if I have the stomach flu or can keep anything down. I have not had children yet though and I am very worried about how me getting pregnant will affect my body. Me and my husband are plannning on having a child within the next few years and this is one of the reasons that I am holding back. SO far the only thing my doctor has told me is that whenever I have a child I need to have a c-section because apparently the stress of labor will kill me. Which doesnt scare me at all but what I am worried about is the 9 months of carrying a child. Has anybody that has VLCAD every been pregnant and how did it affect your body while so?

I have VLCAD, an adolescent onset form. My last pregnancy was published and available for reference. I was still sick in my first trimester. The second and third were great with a normalizing of all my labs. Cesarean was found to be a less safe option. Vaginal delivery with early epideral and forcept assist was the best option. The baby and I made it out alive. The baby was healthy and I returned to prepregnancy health.

My son was diagnoised with VCLAD at birth but has been doing very well. He has been very active and we have been doing all the normal activities like swimming, playing in baby gym and going to school. Even when he was down with really high fever , he didn't want to drink his monogen milk for 10 hours, he was still fine, doctor didn't need him to be on the drip cause his glucose was fine. So I am learning how to cope with his condition. <br />
<br />
At parties i have to watch him closely cause people like to feed him fatty foods. Once he licked butter cream off another kid's fingers, but nothing happened to him. <br />
<br />
His milk is very expensive but as long as it is giving him he vitamins, we will go for it. <br />
<br />
We see his genetics and dietitian regularly. I really pray for his condition to be mild.

Iam sorry i have to comment on what woodfort1 said i hope i dont affend you but After 16 years off having vlcad iam 31 now . i think its hard to say there are far more worse things to suffer from. In my case, its getting worse every year i got older (physicaly and mentaly) even when iam on a phone i have to switch arms now. iam getting jalous on people in a wheel chair who can drive 3 km on pure arm power (also a lot off respect ). i can sleep for 6 ours iff i want to sleep more i have to wake up after 6 ours to eat iff i dont. i wake up with really sore muscles i have to brush my teeth before i take a shouwer cause afterwards i dont have any energy left . dont speak about the sugardrops the also verry annoying . Yes indeed there are a lote worse diseases but this is a verry verry bad one . indeed iam not gonna dei cause it, but it made me a prissoner at home. i have all day every day sore muscles on a good day iam able to do some light stuf like folding the clothes from the dryer or do some little shopping . Every thing you do is a afford and a pain and you never know how much pain youre gonna gain . It hurts when people says ,there worse things to have . iam in 16 year old battle who goes on for the next rest of my life and its getting only harder instead of easyer and iam a lucky one till my 15th year i was able todo anything and i did annything . but youre daughter never gonna have a normal day of life so please dont say it annymore ...iam sorry that i responded like that but ii think people have to reconise that metabolic diseases are proberly on the toplist of bad things to have . And yes we can have fun , and enjoy life but its gonna be a struggle the rest of our lifes . but i want to wish you the best with you and youre daughter and the rest off you're famliy and all the other people with or have to deal with vlcad .<br />
keep on smiling and fighting <br />
<br />
i hope i didnt affend you or hurt you re feeling cause that was not the purpose iff i did iam realy sorry and sorry for the bad english its not my first language so i hope i did expressed my self as i meant it ,

My son is 5 yrs old and had to be hospitalized about 4-5 times through his childhood. Any time he starts vomitting and can not hold down his food, I take him to the ER. Better to be on the safe side. It seems as he gets older his body can handle illnesses better. He is a great boy! We keep him away from sports that require large muscle activity like hockey and soccer. He likes golf and piano as we tried to direct him to muscle-friendly activities. I do not think he understands his condition completely, but whenever someone offers him chocolate he states he is "allergic." He is something else:)

I'm afraid I can't comment on a child as I wasn't diagnosed with it until my late forties, but going by the answers above, and my own experiences with this, I'm sure he'll be fine, and being so young he'll be able to adapt so much better.

once you obtain the information you need, vlcadd is managable. my daughter is going on 8 months and presentedi her 27th hour of life. control their diet and try to keep them from getting sick as much as possible. we have found it is better to be proactive and overreact rather than wait to long for medical treatment for our daughter. vlcadd is intimidating, but there are far worse things to suffer from.

Hi my son has VLCAD. He's now 5 years old. There are many variations to the condition. Luckily, my son has a mild version and thankfully the VLCAD has not affected him in his development or activities. However, it still means that we have to stick to a low fat diet. For us, it's essentially anything 97% fat free. They do lead normal lives - the only time I feel a difference is when he is sick and doesn't want or keep down any food. That's when trips to the hospital to be put on a glucose drip may be necessary.<br />
We live in Victoria and we get great support from the Metabolic Unit at the RCH.<br />
To the lady from WA, I don't know what the facilities are like over there, but over here, there is a dietician that helps us with lists of food that are low in fat. I am sure if you call them, they can send you the information.<br />
I too was overwhelmed when I first found out. It does get easier and there are now so many low fat versions of things around. What I now see as a positive is that, because of the VLCAD, the whole family has taken on a new healthier way of eating which can only benefit us.<br />
Good luck

Hi, My daughter has just bee diagnosed with this disorder 2 weeks after her birth. She is now 5 months. It was very hard trying to understand what this was and the risks involved. We are still waiting on test results like her skin biopsy and second lot of bloods. I do not know when this was posted but he should be fine. It is lucky that it diagnosed early. We were told it can be controlled through her diet. It is hard to understand and to adjust as i have 2 other children that do not have this disorder and with my daughter having this it means our whole family have to change the way we eat. It is very rare but i believe that if i keep an eye on what she eats and i get support from family and friends then she will be fine. Just dont be afraid to contact the doctor whenever you are worried. It may sound like you are repeating yourself many times but you must do what is the best thing for your baby. We live in Western Australia and not many children have been diagnosed so i am finsing it hard myself to find support groups and information from anybody. So if you know anymore than that for me or even recipes that would be great. I need as much help as i can get to help me deal with this. Thankyou