Wednesday, November 19, 2008

Eating Out with a child that has Fructose and Sucrose Malabsorption

Well we went to Ikea last night after dropping my husband off at the airport. I figured Cooper could eat some fructose friendly food there and my daughter could eat whatever she wanted. They ran out of fish so I ordered chips for Cooper. Most of the time that seems all we can ever order when we go out because of his intolerances to Dairy and Soy on top of his Sucrose and Fructose Malabsorption.

His response to hot chips on his plate was less than enthusiastic.

I tried to order fish but they had run out. I ordered the meatballs and Cooper was eyeing them off and crying out 'some' 'some'.
Relunctantly I let him have half a meat ball and proceeded to try to eat my meal. Once Cooper got a taste for those meatballs that was it he kept harping on at me. So in the end I think he consumed 1.5 meatballs. Well it was enough to give him awful stomach aches twice throughout the night and it went on for hours. I knew once I tried a meatball that it had the dreaded onion in it. So I felt we were going to be up with tummy pain.

It's so heatbreaking just going out, there is nothing to give them but hot chips. Imagine that being your only choice everytime you went out to lunch or dinner. Very boring.
I guess I'm going to have to get used to the idea of just packing him a meal whenever we go out.

Monday, November 3, 2008

Toddler Night Waking - Stomach Aches Cramps

Well we are still waiting for Cooper to have his endoscopy and bowel biopsy to check on his fructose and sucrose malabsorption hydrogen breath test results. I have been following a very low fructose and sucrose diet. Along with no dairy, no soy, no egg (due to protein intolerance).

Are there any other food groups left!
The vegetables that I tend to use with low levels of fructose and sucrose less than 1% include:

Mushrooms, and
Green Beans.
There are other vegetables and fruits but a two year old is hardly going to chow down on Chinese cabbage or Asparagus.

I tend to make a Zucchini sauce which is a substitute for tomato sauce. I add salt, pepper, mixed dried herbs (only a little), Nuttlex (dairy free spread), dextrose to give it a bit of sweetness, celery, broccoli and even some rhubarb which gave it a tang. He loves it. I blend half of it with some steamed water. Then pour the other half into the other veges and meat.

2 strawberries per day
Alternating with 2 finger joints sized pieces of rock melon
I'm afraid to go any higher with his dosage of fruits because he seems worse with a lot of fruit.

Beef (mince)

Corn Puffs
Corn & Rice Cakes
Biscuits (home made)
Diet Jelly
Cakes (home made)
Plain Potato Crisps

We are still using wheat (as this needs to be in his diet for the biopsy to test for Coeliac disease.
I make all his biscuits (low sucrose - use dextrose or another artificial sweetener) (low fructose - I give fruit a miss and use cocoa, or imitation vanilla flavouring) (no dairy or soy- because of his protein intolerance).

I'm very careful what I put into his mouth, but still he wakes with stomach aches almost every night. It's very distressing and wearing us down. He is tired during the day and this morning he was tired by 10am because of two episodes of night waking with stomach pain. He fell asleep for three hours, but was awake tonight with tummy ache. When he is having tummy cramps, he lay's down in a darkened room with his eyes closed, twisting in pain from the cramps. I'm always by his side. I've tried various medications to takes the pain away, panadol, natural stomach cramp solutions, but nothing works. We both just wait till the cramps in his tummy subside after about 2-3 hours per session.

All Cooper wants when he has a stomach ache is to be cuddled, he just wants to be with me, his mum. I can understand that, I just wanted my mum around me if I was feeling off colour. Yet, Cooper's problems are not once in a blue moon they are almost every night.

When we lie there in the dark together, he wraps his baby fingers in my hair and runs his fingers through it. I guess it gives him comfort to know at least I'm there with him. I almost think he thinks that stomach aches are normal. He will occasionally wince in pain and say 'Tommy Ake' in his baby voice. Bless him.

All a mum wants to do is protect her child. I am his guardian, I am his advocate, but I'm left with a feeling of helplessness. Nothing I'm doing is working. It's so frustrating. I can fix everything else in my life but not his pain. Every day I try to think what can I feed him that won't give him stomach cramps? Every few minutes I'm thinking what is causing his pain. It begins to consume almost every waking moment. Every morning I wake up, I immediately think of the list of foods that won't cause night waking. What food should I leave out today! What could have caused his stomach ache, was it the sprinkle of mixed herbs, or the rhubarb! I feel like screaming sometimes.

It's not making sense, I am following the diet. This week I've even tried to remove wheat, but without any change. Wheat has Fructans, which may or may not be giving him a problem. I try to approach every day with a positive outlook, and think about what I can prepare meal wise that will be safe. It just isn't working. It seems to have gotten worse.

I think about what it was like to have a normal life. When your baby or child is night waking in pain you can't possibly live a normal life. Life is far from normal. It affects how you think and feel. It affects your energy level, it affects you mentally and physically. It affects Cooper he's obviously tired, and therefore clingy. He was once happy to go to child care, not anymore. I can understand that, who wants to go to the child care when you have had little to no sleep and a crook stomach all night.

Well it's a brand new day tomorrow ...and maybe what I feed will work.

Tuesday, September 30, 2008

Our Fructose and Sucrose Malabsorption Story

My beautiful little boy who is only 2 years old has been diagnosed with Fructose and Sucrose Malabsorption. What a ride it's been. He also has Milk Protein intolerance and Soy Intolerance. The milk and soy intolerance were easy to overcome, compared with the Fructose and Sucrose which has been far more challenging.

He was diagnosed through a Hydrogen Breath Test which was done at the Womens and Childrens Hospital in Adelaide Australia.

Before the test I knew something was very wrong. He was always getting stomach aches, not sleeping and whenever he got stomach aches his appetite would decrease. I suspected it was something to do with sugar. A mothers instinct is very strong.

We are now waiting to have a endoscopy and bowel biopsy. I will add more to our story soon...gotta go.

Support Group For parents of children suffering from fructose malabsorption, sucrose or lactose

Google Groups

Childrens Fructose Sucrose Lactose Malabsorption Group

Visit this group

What is Fructose Malabsorption

  • What is Fructose Malabsorption

    Fructose Malabsorption is not to be confused with Hereditary Fructose Intolerance (HFI), a condition in which the liver enzymes that break up fructose are deficient. In patients with fructose malabsorption, the small intestine fails to absorb fructose properly.

    Symptoms include:

    Typical symptoms of fructose malabsorption in children or babies may include:
  • Bloating (because of fermentation in the small and large intestine)
  • Diarrhea and / or constipation
  • Flatulence
  • Abdominal discomfort Stomach pain (due to muscle spasms, which can vary from mild and chronic to acute but erratic)
  • Irritability and tiredness due to lack of sleep
  • Night Waking
  • Fatigue

There is no known cure, but an appropriate diet will help. However, it is very difficult for undiagnosed sufferers to see any relationship between the foods they eat and the symptoms they suffer, even if they keep a daily diet diary. This is because most foods contain a mixture of fructose and glucose. Foods with more fructose than glucose are a problem. However, depending upon the sufferer's sensitivity to fructose, small amounts of problem foods could be eaten (especially when they are not the main ingredient of a meal).

Nursing Education Resources Medi Smart - Carbohydrate Malabsorption in Infants

Acknowledgement Wikipedia