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Discussions on MCAD deficiency

This blog is meant to discuss about matters that are relevant and important for patients with MCAD deficiency and their parents.
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Low fat cake

daily life Posted on Sun, March 06, 2011 16:47:35

My son with MCAD deficiency will soon celebrate his third birthday.

Does anyone know a good recipe for a birthday cake so that he can also eat from it this year?

Carnitine supplements

treatment Posted on Sun, February 13, 2011 17:48:06

A few days ago we got the news that our 2 year old daughter with MCAD deficiency will have to take carnitine supplements.

For us it is too soon to see the effect of this on her.

What are your experiences with carnitine supplements?
Was there an obvious difference before and after starting with carnitine supplements?

Bracelets or dog tags

daily life Posted on Sun, February 13, 2011 17:42:30

Because our 2 year old daughter with MCAD deficiency looks very normal (or at least since she got rid of that nasogastric tube!) I want to indicate one way or an other that she has a disease that can lead to serious complications. You never know that you would get a car accident or something!

After searching the internet I found this website:

She wears this bracelet day and night and doesn’t seem to mind. On the contrary, she will remind me quickly enough if I forget to put it on again after her bath! 😉

The advantage of this bracelet is that it is good looking and that the child likes wearing it. I assume this is different with dog tags.

An other advantage is that there is a small piece of plastic inside on which you write some data using a permanent marker. You don’t have to engrave anything, and you can easily replace it in case a phone number changes or something.
It is also water proof.

What are your experiences with this kind of thing?
Have you ever needed it?
Are they found by emergency doctors?

Glucose gels

emergencies Posted on Sun, February 13, 2011 17:34:33

In the hospital we were given prescriptions for products like Caloreen and Fantomalt that we should use when our 2 year old daughter with MCAD deficiency won’t eat or vomits. These are to be mixed with water.

Unfortunately she doesn’t want to drink this (she drinks very little even when not sick).

I read that in America there are products like InstaGlucose and GlucoBurst. This is a gel that contains high levels of glucose. With such a gel it should be OK to get small amounts of this in her mouth to give her the necessary glucose.

In Belgium I haven’t been able to find a similar product. Gels for sports are less convenient because they usually also contain cafeine, vitamins and slow sugars.

Does anyone know of such a product available in Belgium or around?

What do you do in case of emergency? All tips are welcome!

Traveling with MCAD deficiency

daily life Posted on Sun, February 13, 2011 17:28:46

Traveling abroad with a rare disease that can get critical very easily is not obvious.

Before our daughter with MCAD deficiency was born (she is now almost 2 years old) we used to be real globetrotters. We had imagined a life where we would show her the most beautiful places on this planet. But now we have become somewhat reluctant. Long travels, food you’re not used to, it can quickly lead to a problem.

What are your experiences with this?

Have you ever have to use the emergency letter your doctor gave you? What were the reactions?