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Resource Type: Article

Does my baby have cystic fibrosis? Your baby does not have a diagnosis of cystic fibrosis (CF). The screening result from the heel prick was positive but the follow-up sweat test does not confirm a diagnosis of cystic fibrosis. Visit the NHS page on the newborn blood spot test for more information....

Resource Type: Article

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Resource Type: External

An information resource by the Children’s Liver Disease Foundation about cystic fibrosis and liver disease. A number of children and young people with cystic fibrosis develop liver problems later in life.

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Resource Type: Article

12 to 19 year olds with cystic fibrosis should do at least 30 to 60mins of moderate to vigorous exercise daily. Resistance training should be done 2 to 3 times a week, including exercises for your arm, leg and tummy muscles. What counts as moderate activity? When you are working at a moderate...

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Resource Type: Article

Outpatient clinics Clinics are Monday morning, Wednesday afternoon and alternate Friday afternoon (this clinic is for specific organisms). Clinics keep patients who have and do not have bacteria separate to keep everyone safe. Your follow-up clinic appointment will either be sent in the post or...

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Resource Type: Article

Blowing games, or deep breathing games are designed to promote deep breaths and to fill the lungs with air. The extra air can also get behind secretions and help to move them out of the lungs. When should they be done? Blowing games should be done 1 or 2 times per day for around 10… Continue...

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Resource Type: Article

Physical activity is encouraged from birth. Young children aged 1 to 6 should take part in at least 60 minutes of developmentally appropriate activities throughout the day. Children with cystic fibrosis should also do at least 1 session of structured exercise at least 15 minutes each day. This may...

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Resource Type: Article

Children aged 7 to 12 should do at least 60 minutes of moderate to vigorous activity everyday. Activities should involve exercises that help build up muscle and bone strength. What counts as moderate activity? When a child is working at a moderate intensity they should feel that they are breathing...

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Resource Type: Article

What is percussion and postural drainage? Percussion and postural drainage is a chest physiotherapy technique to help clear mucus from the lungs. It includes:  Postural drainage, which uses gravity in a few positions to help drain mucus from different areas of lung. Percussion (patting), which is...

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Resource Type: Article

Bone health Childhood is an important time for building strong, healthy bones into adulthood. As adults get older, bones become thinner and weaker and can sometimes be more likely to fracture. In cystic fibrosis, bones are at risk of becoming weaker at an earlier age. This is called cystic fibrosis...

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Resource Type: Article

Flucloxacillin This is an antibiotic which is given to protect your baby’s airway from a bacteria called staphylococcus aureus. This is a common bacteria in young children, so the antibiotic needs to be given 2 times a day for the first 2 years of their life. If this bacteria is found on snot...

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Resource Type: Article

The Cystic Fibrosis Team can be contacted on the below numbers, all 3 phones are in the same office, so if we don’t answer please leave a message. Cystic fibrosis nurses: 0114 305 3366 and 0114 271 7319 (answerphones), and 0114 271 7375. Dietitian: 0114 271 7212 Physiotherapist: 0114 271 7273...

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Resource Type: Article

Nebulisers are used to convert liquid medicines into fine droplets which can be breathed directly into the lungs. Your child has been prescribed DNase (Pulmozyme). DNase is a copy of an enzyme that occurs naturally in the body. It helps to thin down sticky mucus and makes it easier to clear. When...

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Resource Type: Article

What is infection control? Infection control means using ways to prevent or reduce the spread of infection. Infection control can keep your child healthy and is an important part of cystic fibrosis care. Why is infection control important for people with cystic fibrosis? Infections (‘bugs’, or...

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Resource Type: Article

PEP stands for positive expiratory pressure. Bubble PEP is a treatment to help children who have a build-up of mucus in their lungs. Who should complete bubble PEP? Bubble PEP can be used by any child who has difficulty clearing mucus, most commonly those with cystic fibrosis or those who have just...

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Resource Type: Article

What is pseudomonas aeruginosa? Pseudomonas aeruginosa or ‘P. aeruginosa’ is the most common organism causing chronic lung disease in patients with cystic fibrosis. Chronic infection with P. aeruginosa can increase the number of chest infections and in some people, can accelerates the...

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Resource Type: Article

Timetable during inpatient stay Download a PDF of the timetable during inpatient stay What do I need to bring with me? You will need to bring with you: medicines, inhalers, physiotherapy equipment, nebulisers clothes, nightwear, toiletries (toothbrush, hairbrush and so on) nappies or sanitary wear...

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Resource Type: Article

If your child has any of these bacteria they can still go to school or nursery. Children sometimes come to clinic and have a cough but we do not find any bacteria on their swab samples. We will treat these symptoms with a course of antibiotics. Sometimes children may come to clinic and have...

Resource Type: Article

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Resource Type: Article

Nebulisers are used to convert liquid medicines into fine droplets which can be breathed directly into the lungs. Nebulised hypertonic saline is often used for children with cystic fibrosis. Hypertonic saline is a salty solution which can help to clear mucus from your chest. It works by making mucus...

Resource Type: Article

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Resource Type: Article

You should always follow the instruction leaflet provided with the I-neb. You will be taught how to use the I-neb by the physiotherapy team when it is issued. Promixin This is an antibiotic and is a form of Colistin. When using the I-neb you must use the grey chamber. Make up the Promixin as...

Resource Type: Article

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Resource Type: Article

Nebulisers are used to convert liquid medicines into fine droplets which can be breathed directly into the lungs. Your child has been prescribed Bramitob. Bramitob is an antibiotic (Tobramycin) and by nebulising it the medicine gets directly into the lungs to target where bacteria are growing. When...

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Resource Type: Article

Nebulisers are used to convert liquid medicines into fine droplets which can be breathed directly into the lungs. Your child has been prescribed Colomycin. Colomycin is an antibiotic (Colistin) and by nebulising it, the medicine gets directly into the lungs to target where bacteria are growing. How...

Resource Type: Article

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Resource Type: Article

Males with cystic fibrosis can make sperm normally. Potential fertility problems for males with cystic fibrosis The problem in most males (about 98%) with cystic fibrosis is that the tube which carries the sperm is blocked or not there. This does not affect the ability to have erections and sexual...

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Resource Type: Article

A woman’s reproductive system with cystic fibrosis is mostly likely to be normal. Potential fertility problems caused by cystic fibrosis A problem that could happen is the cervical mucus (in and around the cervix) can become thicker and stickier than normal. This may reduce the ability of sperm to...

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Resource Type: Article

A cough can be a problem for people with cystic fibrosis. People with cystic fibrosis have thick, sticky mucus in their lungs which is hard for them to clear. This sticky stuff is a good place for bacteria to grow and a if your child gets a cold or viral infection, it can lead to… Continue...

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