Cystic Fibrosis

Cystic Fibrosis and finding a nursery placement

Today is Joseph’s first full morning at nursery, he is doing two 5 hour morning sessions a week at a lovely little nursery not far from where we live.

first day at nursery!
first day at nursery!

Every parent gets a bit nervous when their child goes to nursery or other forms of childcare for the first time, but it can be especially nerve wracking and a little bit more complicated when your child has a medical condition. I’m going to share with you our experience of finding a nursery placement for Joe who has Cystic Fibrosis.

Joseph is Two years old (27 months). I gave up work to look after him so I have been his main childcare provider up till now. Joe doesn’t necessarily need to go to nursery but I wanted him to experience socialising with other children as he does not have any other siblings and has no child relatives nearby to see on a regular basis.

In the UK, if your 2 year old child is disabled and entitled to disability living allowance they are also entitled to 15 hours free nursery placement a week (term time only) with compatible childcare providers- this includes childminders. See the website for more information.

To recieve  his free hours at nursery Joe had to be reffered by a member of staff at the local children’s centre, and we needed to send in proof of his claiming disability living allowance. You can also ring your local council family liaison department for more information.

It’s also important for Joe to build up his immune system before starting school. Children and adults with Cystic Fibrosis are more prone to catching infections and “everyday bugs” that  perhaps would be harmless to other children but can be problematic for CF sufferers. Joe needs to build up his resistance to these common bugs and infections. By interacting with other children at nursery he is likely to catch many bugs and colds but his body will also get used to these bugs and will eventually be able to cope with them better as he grows older. If we were to introduce Joe to school at 5 years old without him having built up his immune system he would most likely be off sick from school a lot and very poorly so in a way it is better for him to start building resistance now in a controlled way.

It’s quite a tricky thing finding a nursery setting suitable for your child especially if they have additional needs or health problems. Here are a list of the things we looked for in a nursery for Joe:

  • We had to make sure that no other children with Cystic Fibrosis attend the nursery for cross infection reasons. The nursery must be aware that they cannot accept any new children with CF or Bronchiectasis (abnormal widening of the bronchi or their branches, causing a risk of infection) while your child is attendant at nursery, even on days when they are not present.
  • Close to home/ easily accessible in case of emergency and also understanding that Joe may need to be taken out of nursery for hospital visits etc occasionally
  • A good sickness policy for staff and children- our nursery will not accept children if they are unwell which reduces the risk of passing on infections.
  • Relatively small numbers of kids to reduce the risk of him catching loads of bugs and so that staff were not over loaded and could give him the extra attention he needs.
  • Friendly, knowledgable staff who seemed interested in his condition and eager to learn more
  • Clean and sanitary environment again to reduce the risk of him catching nasty infections.
  • focus on outdoor play and exercise
  • Joseph will have to do all his treatments and medication (except creon) in the morning before nursery so it was important that our nursery is flexible with his hours of attendance- some days it may be tricky to get all his treatments done before 8 am.

One of the nursery’s we looked at was very nice but quite dirty- they had a big outdoor area to play in which is great for kids with CF who need a lot of exercise, but it was also full of dirty equipment that had been left out in the rain, pools of stagnant water, sandpits with wet sand and just a general air of unkemptness. Obviously places that have lots of kids running around will get messy and dirty but for a child with CF Stagnant water is a no-no!

Here are a few things to look out for when looking for nursery’s for children with CF

  • Stagnant water- Children with CF must not go near stagnant water as it can carry nasty bugs that can be very harmful to people with Cystic Fibrosis
  • Hay- people with CF must steer clear of Hay as it carries mould spores that can be harmful to the lungs and can also carry nasty bugs and infections- this is particularly true for stables/ pet pens where the hay can get hot and wet.
  • Wet sand and water play tables- It is necessary that wet sand and water in water tables is changed EVERY DAY as the warm wet environment of wet sand can be a breeding ground for bugs dangerous to CFers, and the same goes for water left in water play areas.
  • Mud Kitchens- this is a new craze going round nurseries in the UK where a kitchen is placed in the garden where children can play with mud- make mud pies etc and get really filthy- it’s up to parents to decide if this is ok for there child but I would advise against a child with CF using mud kitchens as soil carries lots of germs and nasty bugs which you don’t want your child to ingest.
  • Home-made play dough- again this is fine to use but must be thrown away after 24 hours as it can carry nasty infections for people with CF due to hot, moist water content.

When we found a nursery we liked we then had to contact Joe’s CF team at hospital. They then check that they have no record of another child with CF at that nursery and write up a care plan for Joe to help the nursery staff provide the best care possible. This was followed by a visit to nursery from Joe’s respiratory nurses who gave a talk on CF to all staff who would be in contact with Joe, they went through his care plan, explained what CF is, showed them how to use Creon micro for his pancreatic insufficiency and answered any questions they might have about the condition and its impact on caring for Joe.

What to include in a care plan:

  • Explanation of CF and its symptoms in your child
  • Explanation of any medicines needed during nursery hours
  • explanation of pancreatic insufficiency
  • Importance of physical activity
  • need for salt in summer months
  • symptoms of breathing difficulties
  • what to do in emergency
  • emergency contact numbers etc

hopefully this will help anyone who is thinking of sending their CF child to nursery and is a bit nervous about it.


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