Medical mystery

Imagine having to sacrifice your favourite food for a week, or worse still, being unable to eat any food at all. Well, this is the struggle that five-year-old Kaleb Bussenschutt endures on a daily basis. Kaleb and his mum Melissa join TODAY from our Adelaide studio to discuss Kaleb’s condition.

Kaleb suffers from a rare condition that has puzzled his family and doctors alike. There’s no known reason why, but food makes him violently ill and fills his stomach with ulcers. Kaleb is allergic to almost all food - he cannot put anything in his mouth other than water and ice.

He is fed for 20 hours a day through a machine that pumps nutrients directly into his stomach. Kaleb cannot even share pencils with friends in case he accidentally ingests a bit of food left there. Doctors have not been able to identify exactly what is wrong with Kaleb and consequently have not had any success finding a cure.

The Bussenschutts are trying to raise money for more research and have organised a bike ride from Melbourne to Adelaide next year. For more information or to contribute phone 0417 814 870.

Medical details

  • About one in 20 children have some sort of food allergy, but most allergies are mild and many disappear in time
  • Cases like Kaleb's are incredibly rare
  • Experts refer to the current generation of children as "Generation A", in reference to the increasing number of allergies, and have called on governments to invest in more research in the area

Allergy statistics in Australia

  • The frequency of allergic disease has approximately doubled in the last 25 years
  • 20% of Australians have at least one allergy, one of the highest rates in the developed world
  • Peanut allergies in children have doubled in the past 5 years with approximately 2% (or 2 in every 100) children affected

The Australasian Society of Clinical Immunology and Allergy (ASCIA) state that in Australia and New Zealand, around:

  • 1 in 3 people will develop allergies at some time during life
  • 1 in 5 will develop atopic dermatitis
  • 1 in 6 will have an occurrence of hives (urticaria)
  • 1 in 10 people have asthma
  • 1 in 20 will develop a food allergy (usually transient)
  • 1 in 100 will have a life-threatening allergy known as anaphylax

Managing allergies

  • Allergies are a significant problem in Australia and should not be ignored
  • Untreated allergies can have an impact on quality of life
  • Hayfever, for example, results in poor quality sleep, fatigue and daytime sleepiness
  • Adults and children are often more irritable and moody than healthier people and find it harder to make decisions
  • School-aged children with hayfever can have issues at school with concentration and have difficulty recalling information taught in class
  • Untreated allergies can also worsen other chronic respiratory problems such as asthma, sinusitis and skin disorders such as eczema and urticaria (hives)
  • When food allergy does occur, reactions are usually of rapid onset, severe and obvious
  • They are almost always accompanied by rashes, throat swelling, vomiting or sometimes a more subtle worsening of atopic eczema
  • Nuts, fish, shellfish, milk and eggs are the most common food allergies in children and can be tested to detect sensitivity
  • Some allergies to foods, drugs and insect stings can lead to a potentially life threatening reaction called anaphylaxis - a systemic allergic reaction which can be fatal, and leads to the death of 10 to 20 Australians each year
  • BUT, anaphylaxis is readily treated with a medically prescribed Epi-pen carried at all times and easily administered by people at risk
  • With appropriate diagnosis and management most asthma, eczema and allergy sufferers will lead normal, active lives with little disturbance to their quality of life

What Melissa says...

When did you first realise that kaleb was suffering such a rare form of food allergy?

At the age of 18 months old. I’d give him something little to eat and within a short time he would have diarrhoea and his backside would burn in his nappy. We kept taking him to the hospital... We thought it might have been a viral infection or tummy bug. We ultimately found out that he is highly intolerant to milk and soy protein - so, we took it out of diet but we increasingly had more problems with him.

Little did we know he was in so much pain... He's got severe malabsorption, so he doesn't absorb food. Doctors have "no idea" exactly what is wrong with him except that food makes him violently ill and fills his stomach with ulcers. They're doing tests to find out why it is that he can't eat food. It can be really hard. If we go out to dinner, to a restaurant, he gets a cup of ice and he'll say `What are you eating?’, ‘What does it taste like?’ or `It's not fair'.

What was this initial period of time like for you?

Horrible... I felt like it was something I did wrong. I’d give him dinner and then wonder how much longer it would be until he was sick.

Does Kaleb understand the severity of his condition? How do you explain this to a five year old?

He understands that food makes him sick. He doesn’t really understand it all completely - it's somewhat difficult to understand. He knows he'll get ill from putting food in his mouth.

How are his friends around him? Do they understand the severity of his condition?

The kids are generally good but he's an easy target to be picked on. He’s doing okay... During lunch and recess the teachers give him jobs to do to keep him distracted. He wears a special coloured vest so that teachers can see him when he's in the playground and to remind other students not to tackle him or play rough so his stomach isn't hurt - he has a button in his stomach. He's fed through his stomach at school... he has a full time nurse with him.

How do you feel eating in front of Kaleb, say at a restaurant?

At the start it was very difficult but he now knows that his parents need to eat. We distract him... He can have a glass of ice but we try not to go to dinner a lot...

Has this situation become easier with time?

No, it’s gotten harder... When we all go out to catch up with friends, everything is about food... At birthdays, barbecues... It's all about food. Even at birthdays he can't have his own cake... It breaks my heart... Kaleb had a birthday party in February, with a clown and face painting - and a birthday cake. He still wanted a birthday cake, but he wanted his sister to eat it. He still wanted to blow out his own candles, but he wanted his sister to have his cake. Socially, he is affected by that.

Tell us more about the charity bike ride from Melbourne to Adelaide next year...

It's going along the great ocean road to raise as much money and awareness as we can. We're putting everyone outside their comfort zone... Living a week as what it’s like as Kaleb. The bike ride is nine days long and a concert will be put on at the end with singer Andy Seymour. The principal will also be organising a battle of the bands. The school community is getting involved - the principal and the pastor, as well as parents. Kids will be taken out of school. The principal wants to make this a bi-annual event.

We're asking for sponsors and supporters to come on board and help us make this happen.

Next Tuesday night we'll be having a meeting in regards to this ride. It will take place at the Golden Grove Lutheran Primary School, in the church complex.

How confident are you that doctors will find a cure?

I don’t know... Some days I think Kaleb might be able to eat again, some time days I'm more negative... It’s an unknown thing. Something that's not in my hands.

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