Welcome to Hot tips – practical advice for CF families. We have collated lots of helpful ideas and suggestions from across the CF community, with input from Jan Tate, our Starship nurse specialist. The content on the website is for informational purposes only and is not intended to be a substitute for professional medical advice or treatment.
- Pack a bag of goodies, toys and activities that are only for hospital stays.
- Get out and about during the day if you can, even if it’s just for an hour. Walk around the grounds or head to the domain.
- Take in your own coffee mug. It feels great to drink out of a proper coffee cup.
- If someone offers to help while you’re in hospital – say yes!
- If you want to try home IV’s just ask.
- Be honest with your child and tell them exactly what the procedures will be.
- Involve your child as much as possible in any decision-making concerning hospital admissions.
- Involve the hospital play specialist. Apart from providing activities for your child, they have the skill and expertise to help you child manage difficult procedure. Help your child build up a rapport with them.
- Ask your child’s school teacher if the class could write letters to them while they’re in hospital.
- Skype with family and friends and school mates.
- Visit the ward when you are in clinic so you and your child can have a look around at the bedrooms, bathrooms and playroom– so the ward is familiar if they need to be admitted in the future. Meet some of the nurses and the play specialist on the ward.
Tips for helping keep the bugs away
- Avoid mud-slides (risk of nasty bacteria can be quite high).
- Rotting onions grow Cepacia.
- Stay away from orchid cactus indoor plants. When in bloom they produce bad pollen. Persons with respiratory problems may find symptoms occur fast. Green cacti are OK.
- Keep PWCF well away from spreading compost and potting mix bags.
- Apply common sense to the most ‘high risk’ places like compost heaps, any stagnant water, potting mix and fridges where bacteria is high.
- Try and avoid hay. It’s not good for your lungs if it’s blowing around as it can contain fungal spores.
- Vases filled with water for cut flowers should be rinsed and replaced with fresh water every day. Stale water can grow Pseudomonas.
- Wipe your front loading washing machine drum after every use and run a bleach wash once a week because the drum breeds smelly mould.
- Sometimes dishwashers can grow a fungus called exophiala which looks like black slime in the rubber seal. It’s a good idea to look out for it. To get rid of it, you can use either water and bleach, or vinegar, and scrub it away using and old toothbrush. Wipe with a sponge.
- People with CF should avoid hot pools (especially thermal pools), spa pools and mud pools.
Tips for physio
- Try blowing games like rice bubbles versus cornflake races.
- A small rebounder in the house is good to use for physio in the wet winter months.
- You could have a ‘physio pillow’ and DVD which they can only use during physio time.
- Moon hoppers are great physio.
- Tickle Time’ is great during physio time.
- Using a swiss ball can make physio a bit more fun.
Tips for medications
- Know which medications need to be kept in the fridge and which don’t. Make sure you keep them out of direct sunlight – especially
- When you’re travelling by plane keep your medicines and necessary supplies in your carry-on bag, not your suitcase.
Tips for giving enzymes
- Give creon granules on puree – curved spoons are soft and easier to push to the back of the mouth, helping to push down your child’s tongue.
- When you think your child is ready to wean onto tablets, put a whole capsule under yoghurt on a teaspoon and they will probably swallow it without knowing!
- Mammoth Supply Company- Peanut butter ice cream. 14.6g of fat per 100g = 7.4gfat
- Mini cinnamon and sugar donuts. One has just under 5g of fat. Great for packed lunches.
- Chocolate covered strawberries. 200grams of melted chocolate buttons. It dries instantly on cold strawberries.
- GU chocolate puddings in the yoghurt or dessert section at the supermarket. Each one contains a very high 26g of fat!
- Cooking tip for schnitzel. Soak in olive oil and salt before flour. Then coat in egg and fresh breadcrumbs – you can also add Parmesan to the crumb mix.
- Flax seed oil is great to add to yoghurts, porridge, custard etc. You can buy it from most health food shops.
- Milk biscuits, cranberries and raisins are great for energy.
- When making chocolate muffins use Ensure Plus instead of milk.
- Avocado Oil is high in healthy fats. Also Rice Bran Oil is high in calories and a good price.
- Hot Milo/chocolate with cream (30mls of cream is 10.5g fat). Pam’s “Choca” is a good high calorie mix because it contains malt.
- Try Snicks Pork Crackling. This can be bought in small packets. It is high in protein, high in fat and calorific!
- Try Meadow Fresh thick creamy vanilla custard – 8.7g of fat per 100 mls.
- Mild cheese has around 37% fat, more than the stronger flavoured Tasty Cheese can provide and you can use more without increasing the cheesy taste of a dish.
- Frying pre-cooked veggies in butter and salt adds more calories.
- Porridge is a good start to the day. Add cream, full fat milk and sugar.
- Semolina is great for little ones. It is quick and easy to prepare. You could use formula to make it up and add some salt and butter.
- Olive oil or canola cooking oil can be added to baked beans, mashed potato, spaghetti etc. Best to add it quickly just as you dish up the meal.
Tips for keeping your nebuliser clean
- Use a pickle container with drainer. Sistema Klip ones are good.
- Pour boiled water over them after every use and air dry.
- Once a week boil in a pot for 10 minutes.
- Don’t boil or wash the tubing and the filter pads.
- Change the tubing at least every month. Contact your home care team for this.
- If you have moisture left in your nebuliser after treatment, leave the machine running for a few minutes after you disconnect the nebulising bowl. The compressor will run air through the tube.
Staying well in summer
- Make sure your children stay well hydrated. Ask if they can keep their drink bottle on their desk at school.
- The heat and all that running around in the sun means people with CF will burn more calories and loose salt when they sweat. Pack plenty of salty snacks such as – nuts, pretzels, potato chips and trail mix.
Simple CF life hacks
- Freeze extra fruit gel in ice cube trays then defrost as needed.
- Package food into enzyme portions in snap lock bags.
- Familiarise yourself with how to read and understand the nutrient panel on food packaging.
- Put a sticker with the amount of Creon required on each item in your child’s lunch box.
- Keep a notebook with non-urgent questions to ask at your next clinic appointment.