Children’s Cystic Fibrosis Information Videos Launched

Physiotherapy Techniques- How to use a Pari PEP

Physiotherapy Techniques- How to use a Pari PEP

The Children’s Cystic Fibrosis team at Leicester’s Hospitals have created a series of short videos on YouTube to help provide advice, information and tips to parents and carers looking after children who suffer from Cystic Fibrosis.

Naomi Dayman, Clinical Specialist Physiotherapist, and Claire Fallen, Senior Physiotherapist, came up with the idea to produce short informational films so that those looking after children with Cystic Fibrosis could check they were using equipment in the right way and using the proper techniques.

Naomi explains further: “The Children’s Cystic Fibrosis Team at the Leicester Royal Infirmary are responsible for delivering a new diagnosis of Cystic Fibrosis to patients across Leicestershire and North Northamptonshire and managing their care needs. It is an overwhelming experience for these families due to the extensive therapies that are required to keep their children as healthy as possible. Meeting each health professional and taking on board the regimes that their child requires can be an overload of information and generate many questions that often arise outside of their clinic appointments.”

Claire added: “It was clear to me that we could help families to process and understand the importance of completing airway clearance techniques including how to use and maintain their equipment. These videos provide quick and easy access to information that may not have been fully understood in the clinic environment.” For example, the team often received questions about how to use Baby PEP (positive expiratory pressure) – the method of using a small piece of equipment used to help check a child’s airway clearance. One of the short films runs through a simple demonstration of the equipment.

One family that use the Children’s Cystic Fibrosis Service are the Jefferys. Jack and Sophie’s second little boy, Stanley-Ray, was diagnosed with Cystic Fibrosis at 20 days old. Leicester’s Hospitals have been part of their journey as Jack explains: “The support from the hospital has been fantastic, they are always on hand to answer any questions we have, nothing is too much trouble and they make time for whatever needs we have. the team don’t just treat the patient, they also get to know the family, which helps a lot especially in the first year when everything is new and appointments are more regular.”

Videos:

The Children’s Cystic Fibrosis team wanted to receive some feedback from families that use the service and Jack and Sophie kindly volunteered. Jack and Sophie have seen all the videos online, saying: “The videos are great, it’s good that there is now something like this that is readily available for new parents to see, your given so much information at first and it can be quite daunting so it definitely helps being able to see things for yourself. We would also like to say thank you to all the team help in different ways and all deserve special recognition in the areas they cover and the amazing jobs they do. As we’ve said they go beyond the call of duty.”

Consultant Erol Gaillard believes that the videos will be extremely helpful: “Regular daily chest physiotherapy is an absolutely essential part in the management of children and adults with cystic fibrosis. There are a number of available physiotherapy devices working in slightly different ways. Despite regular reminder sessions in clinic the videos produced by our children’s physios Naomi and Claire are a fantastic resource for patients and parents. The videos describe in good detail the function of the device and the breathing technique required to get the most out of the physiotherapy devices. In addition there is information on cleaning and maintenance of the equipment.

“These videos are a brilliant way for patients and parents to review their technique in their own time, to remind themselves of the best way to use them and to clarify questions they may have but did not feel confident to ask.”

Get it off your chest CF Blog:

Jack and Sophie decided to start a blog not long after the diagnosis, not only as a diary for Stanley (who will be 1 on 22 July) but also to raise awareness of the condition and for other parents with a newly diagnosed child to be able to look online and see something positive. The majority of blogs on the internet are by CF sufferers themselves in their late teens rather than parents straight from diagnosis and focus on adapting to life with CF or the feelings and thought processes that hit you.

Sophie added: “Cystic fibrosis has now become a part of our lives; treatments have become part of our normal daily routine – having a routine is definitely the key! It allows us to still do all the things we would have done before. We are still learning about CF all the time, things have now settled down from those first few months and everything isn’t as daunting as it once was. When you’re first given the diagnosis it’s hard to imagine how anything can be ‘normal’ again, but it’s possible. You change and adapt, there are so many new treatments coming up allowing people with CF to lead longer and happy lives, we are positive about what the future holds.”

One thing they have learned is CF is unpredictable. One minute you can be eating dinner and the next on the way to the hospital, things can really change that quickly! Routine, preparation and forward planning are the main things, daily routines, preparing medicines, day packs and ensuring things Stanley encounters are as germ free as possible. Forward planning: family parties and making sure we know about the runny noses or colds lingering around!

When they started the blog the main aim was to spread the word of Cystic Fibrosis and to offer a helping hand. Jack explains further: “I felt I wanted to do something big for charity to help get the word out there but also in a way as a coping mechanism in the early months following diagnosis, as a kind of focus. The CF Trust are the charity who we are primarily raising money for but we also want to help CF Team at Leicester Royal Infirmary also, as a token of our appreciation and to ensure they can keep on doing the amazing job they do.

“The London to Paris bike ride was the first big charity event I came across – it involved six months of training and the bike ride itself was more than 300 miles over four days on just two wheels. No amount of training could have prepared us for the bike ride looking back now, the sheer height of the hills and valleys were one hell of a challenge but our goal got us through to the finish line – raising awareness for Cystic Fibrosis. We want to go even bigger than the bike ride in the future – climb mountains, trek deserts (The North Pole has even cropped up as an idea!) and ultimately organise our very own charity challenge in the years to come.”

Majority of parents don’t follow the recommended food guidelines for their toddler

Majority of parents don’t follow the recommended food guidelines for their toddler

Majority of parents don’t follow the recommended food guidelines for their toddler

New research shows that only 14% of parents follow the recommended serving frequency for each of the food groups when feeding their children

New research released today from the Infant & Toddler Forum finds that whilst the majority of the nation’s parents are confident about what food groups to include in their child’s diet, they struggle to put their knowledge into practice. Over a third (35%) are worried they do not give their children the right balance of foods and more than a quarter (26%) feel their child is not getting enough variety.

Amongst the surveyed parents of children aged 1-5, whilst 80% of them correctly identified the key food groups that when combined form a balanced diet, improving their know how is key, and nearly a third (28%) take the advice given to them by experts on what they should be feeding their children.

Few parents also know how often to include the food groups over the day. Only about half of the parents were aware that they should offer their toddler meat, fish, eggs, nuts and pulses two or three times a day despite it being the most important food group for iron, which one in eight toddlers don’t get enough of in their diet.

Similarly, nearly 65 % of the surveyed parents mistakenly thought they should only offer their toddler starchy food; like bread, rice and pasta, once or twice a day, with only 28 % being aware that they need to be offered 3-to-5 times a day.

Parents were found to be cautious of sugary foods – 22% think there should be a complete ban on giving their child cakes, biscuits and sweet puddings, yet it is acceptable for children to have these foods once a day. But confectionary and sweet drinks, including fruit juices, need to be limited to once a week.

When it comes to seeking advice on their child’s diet, about a third turn to fellow parents when out of ideas on how to manage their child’s diet and almost four in 10 use the internet and social media platforms to learn new recipes.

Judy More, Paediatric dietitian and member of the ITF says: ‘some parents find feeding their toddlers a challenge as they are not sure about the best foods to offer, and how much they should expect their toddler to eat.  However, we know that those working with and caring for toddlers are constantly innovating to solve everyday challenges. So, who better to recommend practical ideas to help take the guidance and make it easy for everyone to use’.

Dr Gillian Harris, Child and Clinical psychologist and member of the ITF added: “It’s never too early to start promoting positive behaviour and healthy eating habits to help parents strike the right balance in their toddlers’ diets Following on from last year’s #rethinktoddlerportionsizes campaign, the Infant & Toddler Forum are calling upon parents to share their practical ideas to feed toddlers well at every meal time via a new ideas-sharing online community.

The Science of peer pressure –

We all have faced it. Everyone in all generations go through peer pressure and there is no way escaping it, but surely there are ways to come through it positively. Peer pressure can impact in either ways, positive or negative but its on us to take on the type of impact. This peer pressure can start to influence us from as early as 3-4 years of age, as soon as we get the little understanding of our surroundings, situations and actions. Its up to us adults to make the kids learn the right & wrong of things and situations and take a call on our actions, not succumbing to others unreasonable demands. Kids do not require scolding for every wrong deed. Treat them as little individuals and make them understand how their actions influence others or how they will feel if some-one else does that to him.

Friends can insist, bully and compel for unfair demands or to perform any unjust action. But if we teach kids to just take time to realize and understand the pressure and what could be the effect of it. This way they can slowly learn to accept or reject the peer pressure by considering the outcome and take actions responsibly. This will help shape their life positively.

Here is an infographic depicting some ways to teach the kids to handle peer pressure effectively.

 

The Science of Peer Pressure
The Science of Peer Pressure by Wooden Toy Shop

Anxiety disorders in children

Anxiety in Children

Anxiety in Children

Introduction

It’s normal for children to feel worried or anxious from time to time, such as when they’re starting school or nursery, or moving to a new area.

Anxiety is a feeling of unease, such as worry or fear – it’s an understandable reaction in children to change or a stressful event.

But for some children, anxiety affects their behaviour and thoughts on a daily basis, interfering with their school, home and social life. This is when you may need professional help to tackle it before it becomes a more serious issue.

So how do you know when your child’s anxiety has reached this stage?

Read on to find out:

Where can I go for further information and support?

What are the signs of anxiety in children?

Anxiety can make a child feel scared, panicky, embarrassed or ashamed.

Some of the signs to look out for in your child are:

  • finding it hard to concentrate
  • not sleeping, or waking in the night with bad dreams
  • not eating properly
  • quickly getting angry or irritable, and being out of control during outbursts
  • constantly worrying or having negative thoughts
  • feeling tense and fidgety, or using the toilet often
  • always crying
  • being clingy all the time (when other children are ok)
  • complaining of tummy aches and feeling unwell

Your child may not be old enough to recognise why they’re feeling this way.

The reason for the anxiety (if there is one) will differ depending on the age of the child. Separation anxiety is common in younger children, whereas older children and teenagers tend to worry more about school performance, relationships or health.

What types of anxiety do children and teenagers experience?

Common types of anxiety in children and teenagers are described below.

A fear or phobia about something specific

Children are commonly afraid of things like monsters, dogs or water. This is a perfectly normal part of growing up, but has the potential to become a phobia (a type of anxiety disorder) when the fear becomes overwhelming and affects your child’s day-to-day life.

Read about phobias.

Feeling anxious for most of the time for no apparent reason

While it’s normal for children to frequently have fears and worries, some anxious children may grow up to develop a long-term condition called generalised anxiety disorder when they become a teenager or young adult.

Generalised anxiety disorder causes you to feel anxious about a wide range of situations and issues, rather than one specific event.

People affected by it feel anxious most days and often struggle to remember the last time they felt relaxed.

Read more about generalised anxiety disorder.

Separation anxiety

Separation anxiety means a child worrying about not being with their parent or regular carer.

It is common in young children, and normally develops at about six months of age. It can make settling into nursery or school or with a child minder very difficult.

Separation anxiety in older children may be a sign that they’re feeling insecure about something – they could be reacting to changes at home, for example.

Social anxiety

Social anxiety is not wanting to go out in public, see friends or take part in activities.

Social ‘shyness’ is perfectly normal for some children and teenagers, but it becomes a problem – ‘social anxiety disorder’ – when everyday activities like shopping or speaking on the phone cause intense, overwhelming fear. Children affected by it tend to fear doing or saying something they think will be humiliating.

Social anxiety disorder tends to affect older children who have gone through puberty.

Read more about social anxiety disorder.

School-based anxiety

Some children become anxious about going to school, schoolwork, friendships or bullying, especially if they’re changing school or moving up a level.

They may not always share these worries with you, and instead complain of tummy aches or feeling sick. One of the signs is crying or seeming tired in the morning.

This may be a problem that needs tackling if it is significantly affecting their daily life (see below).

Less common anxiety disorders

Post-traumatic stress disorder and obsessive compulsive disorder are other anxiety disorders that can occasionally affect children, but are usually seen in adults.

It’s rare for children to have panic attacks.

When is anxiety a disorder that needs treating?

It is probably time to get professional help for your child’s anxiety if:

  • you feel it is not getting better or is getting worse, and efforts to tackle it yourself have not worked
  • you think it’s slowing down their development or having a significant effect on their schooling or relationships
  • it happens very frequently

How serious can it be?

Long-term anxiety can severely interfere with a child’s personal development, family life and schooling.

Anxiety disorders that start in childhood often persist into the teenage years and early adulthood. Teenagers with an anxiety disorder are more likely to develop clinical depression, misuse drugs and feel suicidal.

This is why you should get help as soon as you realise it’s a problem.

Where should I go for help?

Seeing your GP

You can talk to your GP on your own or with your child, or your child might be able to have an appointment without you. The doctor should listen to your concerns and offer some advice about what to do next.

Your child may be referred to the local child and adolescent mental health service (CAMHS), where the workers are trained to help young people with a wide range of problems. Professionals who work in CAMHS services include psychologists, psychiatrists and psychotherapists. They should offer help and support to parents and carers as well as the child. Learn more about CAMHS.

Youth counselling services

If your child doesn’t want to see a doctor, they may be able to get help from a local youth counselling service.

Youth counselling services are specially set up for young people to talk about what’s worrying them, and get advice.

For more information, visit Youth Access, the largest provider of young people’s advice and counselling services in the UK.

Telephone or online help

Telephone helplines or online services can be helpful for children and young people, who may feel it’s easier to talk to someone who doesn’t know them. See Where can I go for further information and support?

How can an anxiety disorder be treated?

The type of treatment offered will depend on what is causing your child’s anxiety.

Counselling

It can be helpful for your child to talk in confidence about what is worrying them to a trained person, especially as it’s someone they don’t know.

If your child is being seen at CAMHS, they might see a child and adolescent psychotherapist or a clinical psychologist. If they are at a youth counselling service, it will be a trained youth counsellor or psychotherapist.

These sessions can help them work out what is making them anxious and how they can work through the situation.

Cognitive behavioural therapy

Cognitive behavioural therapy (CBT) is a talking therapy that can help your child manage their problems by changing the way they think and behave.

It has been proven to help with anxiety that isn’t severe, and is commonly offered to young people who are anxious.

Your child will work with the therapist to find ways to change the way they think and find strategies for coping in situations that make them anxious. They’ll usually have 9-20 sessions.

It’s not clear whether CBT is effective for children younger than six years of age.

Learn more about CBT.

Medication

If your child’s anxiety problem has not got better, your doctor may talk to you about trying medication.

A type of antidepressant, called a selective serotonin reuptake inhibitor (SSRI), may help your child feel calmer and differently about things.

Antidepressants usually take around two to four weeks to work properly, so you or your child may not notice the difference immediately.

It’s natural to be concerned about side effects. Your child should be aware of any possible adverse effects and should tell you or their doctor if they happen. Read more about SSRIs.

What can I do to help my child?

If a child is experiencing anxiety, there is plenty parents and carers can do to help. First, it’s important to talk to your child about their anxiety or worries. Read our advice on How to help your anxious child.

Why are some children affected and others not?

Genes and personality

Some children are simply born more nervous and anxious and less able to cope with stress than other children.

A child’s anxious personality may be partly determined by the genes they’ve inherited from their parents. Parents of anxious children may recognise the signs and remember feeling and behaving the same when they were younger.

Stressful environment

Children can pick up anxious behaviour from being around anxious people. If you’re worried that your child might be influenced by our own behaviour, you might want to listen to these podcasts offering advice about anxiety and worry and explaining how you can take control of your anxiety.

Some children can also develop anxiety after a series of stressful events. They may be able to cope with one of these events, but several difficult events together may be too much for them to cope with. Examples are:

  • Frequently moving house and school – it can be hard to settle when you’re always expecting change
  • Divorce or separation of parents, especially when there are new step parents and siblings (although many children will adapt to this and settle in time)
  • Parents fighting or arguing
  • Death of a close relative or friend
  • Becoming seriously ill or injured in an accident
  • Having someone in the family who is ill or disabled
  • School-related issues such as homework or exams, or bullying or friendship problems
  • Becoming involved in crime
  • Being abused or neglected

Medical conditions

Children with certain conditions such as attention deficit hyperactivity disorder (ADHD) and autistic spectrum disorders may experience anxiety as part of the symptoms of their condition, because of differences in the way their brain functions.

How common are anxiety disorders in children?

Nearly 300,000 young people in Britain have an anxiety disorder.

In the UK, anxiety disorders are estimated to affect 5-19% of all children and adolescents, and about 2-5% of children younger than 12.

Separation anxiety is the most common anxiety disorder in children younger than 12.

Shine the Magazine – a new online publication for teens with disabilities

Shine a magazine for teens with disabilities

Shine a magazine for teens with disabilities

My name is Michaela Quigley, and I am a senior magazine journalism major at S.I. Newhouse School of Public Communications at Syracuse University in New York.  I am the founder of Shine the Magazine.

Growing up, I played soccer with my friend Miranda. The coach did not play her in the games because she has a disability. The second year that we played, however, new coaches took over the team. These two coaches played Miranda in the games. When the season ended, Miranda’s mom thanked the coaches for allowing her take part in the game. Miranda’s mom should not have had to thank the coaches. Miranda is an athlete.

I am launching Shine the Magazine. Shine is an online publication for teenagers and young adults with disabilities. It caters towards both boys and girls/men and women with physical and intellectual disabilities. Shine does not discriminate against anyone. The teens with the disabilities will be the writers and the readers. It is for teens with disabilities by teens with disabilities.

The publication will be a general interest magazine. Its sections will include life, food, sports, fashion, and entertainment. If the writer wants to talk about their disability, they can. If they want to write about something else, like a sport they enjoy, they can also do that. These teens have interests beyond their disabilities. Sometimes too much of a focus is put on the disability and not the person, so I want to change that. The readers could find a new sport that they didn’t know about or that they didn’t think they could play by reading Shine and learning about other people’s experiences.

Teens are not limited to written articles. If someone would rather make a video, they can submit one. The video doesn’t have to be fancy. It can simply be a video of the person telling their story. The teen can also submit videos that someone else made about himself or herself. Shine also welcomes photo submissions. Through Shine, teens with disabilities can become journalists, writers, videographers, and photographers.

The missions of Shine include, creating a community, learning from others, giving people a voice, and allowing people’s abilities to “Shine.” After talking to one parent, she said it is hard for her son to find people to talk to who have gone through similar situations as him. Shine will allow people to comment on other’s stories and start a conversation. Another parent said her daughter’s friends don’t include her. With Shine, her daughter will have a community supporting her.

I chose to create an online publication instead of a print publication because online allows for the content to be more accessible. The website will have features like text to speech or options to enlarge the font. If someone submits a long article, Shine will create a summarized version in case someone didn’t want to read a long story. The videos will also have closed captioning.

The website will be launching in June. Once Shine gains readers, I will look into buying an office space. This will probably be a few years away, however. I plan on hiring people with disabilities to help increase the employment rate of those with disabilities. Through Shine, young adults can become paid editors. I also plan on holding workshops for teenagers with disabilities who are interested in the journalism field. The workshop would teach the teens writing, editing, and photography skills.

I am currently looking for readers and writers. If you are interested in learning more or are interested in submitting a story to Shine, please email Michaela Quigley at shinethemagazine@gmail.com. If you want to write a story, but are having trouble deciding on a topic, Shine can help! Again, email Michaela Quigley at shinethemagazine@gmail.com.

Miranda’s nickname is Sunshine, hence the name Shine. I look forward to connecting with you! Let your abilities Shine!