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MCADD on Willem's Blog

Hospitalised with MCADD

Averting a metabolic crisis by infusion

May 4, 2021
This week our son was hospitalised because a regular illness caused him to keep vomiting, a dangerous situation if you're diagnosed with MCADD.

This week we experienced the first time that our son was hospitalised since he was diagnosed with MCADD, a metabolic condition that limits his body's ability to utilise fats for energy. Do you or your kid have MCADD? Then, read along and don't worry, as everything will be allright!

Six months with MCADD

Thoughts and tips on the daily life as parents

June 24, 2019
It's six months since our son was born with MCADD, a good moment to reflect upon the experience of being a parent with some thoughts and tips.

Tomorrow it's six months since our son was born, a good moment to reflect upon the experience of being a parent of a kid with MCADD. This metabolic condition demands special attention on the feeding schedule and preparation for situations when things go different. It's good to share that this has quickly become normal for us, here are some thoughts and tips.

Born with MCADD

Medium chain acyl-CoA dehydrogenase deficiency

Jan. 29, 2019
Our son was diagnosed with MCADD days after he was born. We experienced a metabolic crisis but were lucky to be just in time!

Just days after our son was born, we ran into trouble when our little man didn't want to eat anymore. Repeated attempts to feed him failed as he appeared to be too tired to drink from his mother. When we measured his body temperature we were shocked, only 33º Celsius! What followed was nothing less than an incredible emotional rollercoaster!

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Ella's Kitchen fruit pouches are a perfect way to offer something sugary - we always have a few in stock for MCADD emergencies
Ella's Kitchen fruit pouches are a perfect way to offer something sugary - we always have a few in stock for MCADD emergencies
Dealing with MCADD, the L-Carnitine medicine and Fantomalt energy powder (photo by Ellen Middelkoop)
Dealing with MCADD, the L-Carnitine medicine and Fantomalt energy powder (photo by Ellen Middelkoop)
Saving the life of our son - note the heart rate monitor being unable to detect heart activity (the green question mark)...
Saving the life of our son - note the heart rate monitor being unable to detect heart activity (the green question mark)...
Nurses explain what they measure - making the kids (and parents) feel comfortable in the hospital
Nurses explain what they measure - making the kids (and parents) feel comfortable in the hospital
It felt like victory to see him drinking again!
It felt like victory to see him drinking again!
Sleep data during the first six months
Sleep data during the first six months
Magic potion from the local academic hospital (UMC Amsterdam)
Magic potion from the local academic hospital (UMC Amsterdam)
The hallways in the Kinderziekenhuis are full of interesting things to allow the kids a little break from being a patient - I'll happily play along!
The hallways in the Kinderziekenhuis are full of interesting things to allow the kids a little break from being a patient - I'll happily play along!
Time to wake up (photo by Ellen Middelkoop)
Time to wake up (photo by Ellen Middelkoop)
Hot drinks for father and son on the go
Hot drinks for father and son on the go
At least he got a cool Garfield adhesive band aid
At least he got a cool Garfield adhesive band aid
VU Amsterdam emergency room
VU Amsterdam emergency room
Bring your bunny rabbit when you're going for an infuse!
Bring your bunny rabbit when you're going for an infuse!
Boink boink, hello daddy! Playing around!
Boink boink, hello daddy! Playing around!
Feeding at night (photo by Ellen Middelkoop)
Feeding at night (photo by Ellen Middelkoop)
Hello from the emergency room - connected to the infusion system
Hello from the emergency room - connected to the infusion system
Fighting cramps with Infacol and reflux with Nutriton
Fighting cramps with Infacol and reflux with Nutriton

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