A guide for parents and carers to help children understand more about: Enzymes Malabsorption High energy foods

Transcription

1 A guide for parents and carers to help children understand more about: Enzymes Malabsorption High energy foods The education packs are not intended to replace any advice given from a specialist CF team

2 Enzymes What to know Pancreatic enzymes eg. creon are taken by mouth with food. They come in several forms as capsules filled with powder, beads or granules, and in several strengths. The CF team will help you find the best type of enzyme that will work best for your child. They are needed to help the natural enzymes that digest fat protein and starch in the body. How many enzyme capsules your child has will depend on the following: How much of your child s natural enzyme reaches the small intestine How much your child eats What kind of foods especially how much fat and protein your child eats The right amount of enzyme You may wonder How do I know if I am giving my child enough enzymes? Children who are not having signs of malabsorption-(fatty stools / bloating /wind /tummy aches) and are gaining weight and growing well are probably getting enough enzymes. (See next section for more information on malabsorption) How enzymes work in the body Enzymes are taken with food and travel into the stomach. Most enzymes have a special coating that keeps them from being destroyed by the acid in the stomach. From there the enzymes pass into the small intestine where they digest the food. Nutrients from the food are then absorbed into the body by blood vessels of the small intestine. Enzymes and Different Types of food Foods are made up of carbohydrates, proteins and fats. Enzymes are needed to digest fat protein and starch. Extra enzymes are needed with fatty foods, as fats are more difficult for enzymes to breakdown. Foods that contain mainly sugar such as fruit, fruit juice,squash, jelly and ice lollies do not need any enzymes. Skills to learn -What you can do Your goal is to give the right amount of enzymes to prevent symptoms of malabsorption. You can: Learn how and when to give enzymes. Make a plan for adjusting enzymes. Learn to balance the amount of enzymes with the amount and types of food your child eats. Solve problems with taking enzymes /enzyme refusal.

3 When and How to give Enzymes Enzymes need to arrive in the small intestine at the same time as the food. Enzymes should be taken at the start of eating. If the meal lasts longer than 30 mins more enzymes need to be given. WHEN Infants and children often do better when they take enzymes before a meal. They may be bored toward the end of the meal, and this can make it harder to get them to take the enzymes. Some children vary the amount of enzymes they take based on how much they eat at each meal.if you are not sure how much your child is going to eat you may want to give some at the beginning. Then as you see how much your child is eating, you can decided how many more enzymes to give. Children who take several enzymes with meals do better taking them throughout each meal. If you gave your child enzymes before a meal and then your child ate little or nothing offer some milk within 30 minutes and try not to worry. When your child forgets to take enzymes at mealtimes take them within minutes after the meal. HOW Infants and children who take enzymes granules The granules should not be chewed or crushed. Mix granules with 1-2 teaspoons of food that does not require chewing eg. yogurt jam, fruit puree. The granules should be swallowed as soon as they are mixed with food. Enzymes may irritate the gums and tongue if they remain in the mouth Make sure your child drinks after taking enzymes. Learning how to swallow pills By the age of five, most children can learn to swallow pills.a child s muscles need to develop a certain level of co ordination to learn this skill. If you think your child is ready, go through the steps below with your child. Remember as you work with your child that pressure or stress will not be helpful. Here are some pointers to help: Lots of praise and support your child s effort and willingness, do not punish your child. If one of you gets frustrated try again another time. You can demonsrate how to take a pill. Try practicing with your child for 5 mins. Follow the steps below Wet your mouth with a sip of water. Stick out your tongue. Place the pill length ways on the back of your tongue over the hump. Bring your tongue back into your mouth. Keep your head straight or tilted back slightly. Take a sip of water and swallow.

4 If that way doesn't work try this: Take a large sip of water but don t swallow. Tilt your head back so you can open your mouth with out water dribbling out. Put pill into mouth and use your tongue to move the pill and the water to the back of your mouth back. Swallow. Adjusting the Amount of Enzymes You will work with the CF team to find out the right amount of enzymes to prevent malabsorption How will I know this? Signs as to when the enzyme dose needs to be changed Enzymes may need to be adjusted when the meal or snack contains more fat than the usual amount. Signs of malabsorption -(fatty stools / bloating /wind /tummy aches) when taking the usual amount of enzymes- this is when the pancreas has fewer natural enzymes to digest food. Major changes in your child s diet. A plan for adjusting enzymes Work out with the CF team how and when you can adjust the dose. Example: Foods with more fat. Maximum amount of enzymes you would be allowed to increase safely. How soon you would expect the symptoms to improve after increasing the enzymes. Balancing Enzymes Work out with the CF team a range of enzymes to have with meals and snacks. High Fat foods Get to know which foods contain extra fat. Check labels and the foods that cause your child to have malabsorption. Discuss with the dietitian how many enzymes are needed. Questions Does your child take the same number of enzymes with every meal or snack? If the same amount is given with every meal or snack do you notice signs of malabsorption?

5 If you notice sings of malabsorption talk to your dietitian at your CF centre What your child can do to help them learn about enzymes TODDLERS Taking Enzymes Remembering to take with meals and snacks as part of their routine at meal and snack times. Learning why enzymes are necessary. Use the enzyme packs to show where the enzymes work to change food, so that the body can use it to "Go and Grow" Enzymes are "food helpers". CHILDREN Taking enzymes Let your child count out the enzymes by 3-4 years of age Talk about how many enzymes are needed with food and milk. This will help your child make the connection between food and enzymes. Talk about why enzymes are needed. As soon as your child is willing, use information on swallowing enzymes. Use the education booklets with your child to help them understand about enzymes see selection below

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7 Malabsorption MALABSORPTION This is when food is not completely digested and cannot be absorbed into the body. The food which contains calorie/energy protein and other nutrients pass out of the body into the stools. What happens when food is not absorbed? Your child may not gain weight Painful symptoms : Increased stools/loose stools/ greasy/oily stools Colours - pale/yellow/orange stools Lots of wind Bloating Painful cramps When can malabsorption happen? Increased appetite without increasing enzymes. A child may start to eat different foods with more fat or protein. The natural enzymes are reduced and you may show signs of malabsorption. How to monitor for malabsorption Increased number stools. (normal number stools 1-3 babies,toddlers 2-3,children 1-2 daily) Large bulky and soft stools. Loose stools but not watery. Greasy or floating stools. Foul smelling stools. Other signs Excess wind -from undigested food being broken down by bacteria in the gut. Bloating -excess gas and undigested food can make your child feel full. Cramps and pain. Change in appetite -eating more food, as food is not being digested. Poor weight loss or growth. Rectal prolapse -when the rectum protrudes out of the body due to poor muscle tone usually occurs under the age of 3 years. Is it malabsorption or diarrhoea? If the stools are watery this may be caused by a virus or bacterial infection or a change in anti biotic treatment. Do not change enzymes and check with CF team.

8 Deciding how to Monitor Your Child Toddlers: Checking the stools every day is not a good idea unless they are in nappies. Helping them learn to use the bathroom and not getting in the way is important. Most toddlers are interested in poos. Checking will probably be automatic as toddlers need help in wiping. Preschoolers: Avoid checking unless your child has symptoms. Keep it simple and tell them what you are looking at and what action you will take. E.g. 'This stool looks greasy we will try an extra enzyme and see if that helps'.in this way checking for malabsorption will be routine. School-age children: Children need privacy as much as possible. By 7-8 yrs many children will start to check their own stools. Talk to them directly about malabsorption Eg."You said you had a lot of wind today. Check to see if your stool looks greasy. Maybe the ice-cream you had at Sam's house needed more enzymes or did you forget to take your enzymes? "This will help you talk to your child about enzymes matter of factly. Teens: Your child needs to be completely independent encourage your child to talk to the CF team to learn how to fully manage symptoms of malabsorption. Talking about stools: For most of childhood talking about stools is embarrassing. This is normal as they become more concerned about modesty and privacy. Adults gain the acceptance of stools and malabsorption. In order to help your child, avoid talking about stools in front of other people. Only discuss with other carers or medical staff. When talking about stools describe what you see in simple terms and what action you will take if there are signs of malabsorption. Your child will soon understand that the purpose of looking at stools is to solve problems.

9 Making a plan Does your child have any of the following symptoms? loose stools large amount stool greasy /floating stools lots of wind foul smelling wind /stools bloating stomach pains lots of liquid +stools Check list Check the following if there are signs of malabsorption. The following questions can be reasons for malabsorption. Have enzymes been taken? Y/N If no remember to take next time. If meal took longer than 30 mins were more enzymes given?y/n If no remember to take more enzymes after 30 mins of eating. If a large meal has been eaten have the enzymes been given at the beginning and the middle of the meal?y/n If no by splitting the dose the enzymes may mix better. Infection or change of antibiotics?y/n If your child has an infection this may be the cause of the malabsorption Are the enzymes stored in a cool place and are they in date? Y/N If no your enzymes may not be working properly. If all the above are OK try the following and use the food and enzyme diary. Write down all food eaten in the previous 24 hrs.was there more fat than in the food normally eaten? Y/N If no review over a week and discuss with the dietitian if ENZYME dose needs increasing. If yes increase by 1 enzyme per meal or snack. If this is more than your maximum dose, contact the dietitian. Review in one week. If no improvement contact CF Team. Goals Questions : What can you do to help your child monitor for malabsorption? How have you and your child talked about malabsorption? What is your plan if symptom of malabsorption appear? Who can your child talk to in the CF team about malabsorption?

10 High Energy Foods Helping your child eat a high-energy high protein diet The body needs energy /calories for all functions digestion, breathing, growing, moving. Why a child with CF needs more calories: Enzymes do not digest all the food and some energy is lost in the stools. Extra energy from calories is used to fight chest infections. If there is a temperature even more calories are needed. Breathing with damaged lungs or during infections is hard work and it burns up a lot of calories. Children need to eat a high calorie diet to store up some energy for when they are unwell and they may not feel like eating. When children don t eat enough calories they may not get enough energy to play and do sports or grow. If children are underweight this makes it harder to fight infections and more weight maybe lost. A high energy diet Often children cannot eat large quantities of foods so packing in the calories into all foods can help. What can you do: Help your child to have a good appetite. Give foods with lots of calories. Plan meal that can be served to the whole family. Building a good appetite: Regular meal times This helps to prepare your child for meal and snack times at certain time of the day. The body will begin to prepare for food at these times. When the meal arrives the child will expect to eat. Children will feel less pressurised to eat when they do not have to face food all the time

11 Limit meals to 30 minutes This will help space your meals to 3-4 hours apart. This will give your child time to get hungry and look forward to the next meal. A shorter mealtime may save it from seeming like a punishment for the child and the rest of the family. Children are less likely to eat as the meal drags on. Don t threaten your child with ending the meal. Make mealtimes a positive time Try to sit down as a family in a special place as this will be a signal to eat. Avoid unpleasant topics of conversation during meals. Children like to eat with other people around. Avoid coaxing arguing or pleading with your child or explaining about nutrition this may make your child eat less. You do not want your child to feel that eating is a medical task it needs to be a pleasant part of every day. Use your child's developing skills to make mealtime fun Children feel good about learning new skills. Young children may like to eat with a fork and spoon. When young children first learn to eat by them themselves they may eat less. In the long term this is better than the parents feeding them. Older children may enjoy helping to prepare the meal. They can stir bake or set the table. Picky Eaters Offer nutritious foods. Avoid squash, fizzy drinks,sweets and juices. Family Meal times Ideas to do high calorie foods : Separate containers /jugs for high calorie drinks and foods. Use same foods but add extra sauce or cheese, margarine or butter. Salad can be given with salad dressing and a high calorie side dish. High calorie foods Snacks between meals and bedtime. High calorie snacks. Add calories to foods. Limit low calorie food. Talk to your dietitian about foods to give Use UK CF Trust booklet for ideas

12 The UK Nutrition Education Program can help your child understand more about : How Enzymes Work How Many Enzymes do I need? Matching Fat and Enzymes Swallowing Enzymes Taking Enzymes at the Right Time Remembering Enzymes Looking at Labels Kids Poos Food and Enzyme Diary Vitamins and Salt Are You Getting the balance Right? Energy Foods for Kids Are You Growing? The education packs are not intended to replace any advice given from a specialist CF team Produced by: North West Midlands Cystic Fibrosis Team University Hospitals of North Midlands NHS Stoke -on- Trent, ST4 6QG Staffordshire, England Contact: sue.bell@uhnm.nhs.uk Tel: Acknowledgements: North West Midlands CF Centre U.K Cystic Fibrosis Trust for Clinical Improvement Grant. Australian Nutrition Education Program - Princess Margaret Hospital Perth Australia. U.K Dietitian s Interest Group. Produced 2004 version3 Reviewed 2015 Review 2018