Acute kidney injury (AKI) is when the kidneys stop working over a short period of time – a few days or a few weeks. It is sometimes called acute kidney failure (AKF) or acute renal failure (ARF).
Useful links for long term health conditions
Learn the basics about food allergies, their symptoms and how they are diagnosed. If your child has a dry skin, itchy nose, sneezy nose, wheezy chest or queasy stomach then they may have an allergy. More information available here.
Information on food allergies can be found here.
Anaphylaxis (pronounced ana-fill-ax-is) is a severe and potentially life-threatening allergic reaction. If your child has a dry skin, itchy nose, sneezy nose, wheezy chest or queasy stomach then they may have an allergy. More information available here.
Arthritis doesn’t just affect the elderly. Find out more about conditions affecting the bones and joints of children and young people; to hear the experiences of a young person with arthritis, click here.
Don’t let asthma stop your child living their life. Learn more about asthma and find ways to help your child stay well.
Brain tumours are quite complex - at present, over 130 different types of 'high grade'(cancerous) or 'low grade' (non-cancerous) brain tumours are known. Find key information about brain tumours in children and young people including symptoms, diagnosis and treatments, and read advice on living with, or caring for someone with, a brain tumour.
The Children's Trust Brain Injury Community Service is the the UK's leading charity for children with brain injury and neurodisability.
7 young people are diagnosed with cancer every day in the UK. Your child doesn't have to face cancer alone - find out about cancer types, treatments and living with cancer as a teen or young adult. This information has been written specifically for young people and reviewed by other young people with cancer.
Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
For more information on CFS and the Specialist Chronic Fatigue (ME) Service for children and young people anywhere in the UK, please click here.
Chronic kidney disease (CKD) is a lifelong condition. The kidneys gradually stop working as well as they should. This usually happens over many years.
The Pain Toolkit is for people who live with persistent pain and Healthcare teams who support them. It helps people allover the world self manage persistent pain.
There are many young people in the UK who are born with a cleft lip or palate. Some of them have shared their stories about everything from school to surgery.
Growing up with coeliac disease, especially in childhood, can have its challenges, especially as children/young people begin to eat out more with friends. Don’t let your child be embarrassed about having coeliac disease; it’s part of them and their friends will understand.
Cystic fibrosis(CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs,especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. Find out more…
Diabetes is a serious and complex condition where your blood glucose is too high, this can happen when your body doesn’t produce enough insulin or the insulin it does produce isn’t effective (Type 2 Diabetes), or when your body can’t produce any insulin at all (Type 1 Diabetes). Growing up with Type 1 or Type 2 Diabetes can be tough but there’s lots of support available for children, young people, young adults and their families. Listen and watch the experiences of others living with diabetes on the DigiBete website; learn more about diabetes by visiting the JDRF and Diabetes UK websites and find out how you can get involved in Type 1 Diabetes research by clicking here.
‘Why do I have eczema?’ is a question asked by a lot of children with eczema. Find out more about eczema or listen to the experiences of other young people with eczema and find out how, as a parent, you may be able to answer some of these questions for your child.
If your child has epilepsy, they probably have all sorts of questions about how epilepsy could affect their life.
You can listen to the experiences of a young person with epilepsy by clicking here. Young epilepsy provides great help and support.
Focal segmental glomerulosclerosis (FSGS) and IgM nephropathy cause nephrotic syndrome. This causes swelling in the body, especially in their face, legs and feet.
Glomerulonephritisis a group of conditions that cause inflammation (swelling) in the kidneys. Children with glomerulonephritis have blood and protein in their urine, and may have swelling in their body, especially in their face and legs. Find out more…
Haematuriameans there is blood in the urine (wee). If there is a lot of blood, the urine may be red or dark brown. In most children, haematuria is not serious. In some children, it is a sign that there is a problem with their kidney and these children may need special treatment. Find out more…
In haemolytic uraemic syndrome (HUS), the small blood vessels inside the kidneys are damaged. There are changes in the blood and the kidneys stop working properly.
What are bleeding disorders? How do you diagnose and treat them? Can there be any complications? These are all legitimate questions for any parent to have. Find out more about haemophilia here.
Click here to read lots of useful information from the British Heart Foundation on heart conditions in children.
Henoch-Schönlein purpura (HSP) is a condition that affects different parts of the body. Tiny blood vessels in the body become inflamed or swollen.
It’s important for a child with HIV to know that they are not alone. Allow your child Hear the experiences of other young people living with HIV here. You can also find ways of accessing local support for your child as well as the Body & Soul Beyond Boundaries programme.
To watch a video on misconceptions about HIV please click here.
If you have a child with hydrocephalus, click here for more information and advice provided by the Hydrocephalus Association.
Hypertension means that your blood pressure is too high. In some children, hypertension can be a serious condition. It can increase the risk of getting other diseases, especially if the hypertension continues into their adult years. Find out more…
Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease, affecting more than 300,000 people in the UK. Yet it is largely a hidden disease, and one that causes stigma, fear and isolation – it’s thought that many people with the condition go undiagnosed and suffer in silence. It doesn’t have to be like this. Learn more….
Don’t let a medical condition change your child's life. Change the way they deal with it – by living as best they can with the security of a Medi band or Medic alert medical ID bracelet or wristband.
Climb is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.
Mitochondrial Disease is a chronic, genetic disorder that can be inherited in a number of ways. Because there are many forms of mitochondrial disease and therefore Mitochondrial disease presents very differently from individual to individual.
When a person has Mitochondrial Disease the mitochondria in the cells are not producing enough energy. Sometimes they are not very efficient or they do not work at all. Depending on which Mitochondria are affected will depend on which organs are affected.
Activities like running, swimming, cycling or even simple ones likes walking or breathing can be difficult or completely impossible if you are suffering with Mitochondrial Diseases.
For help and for more information, visit the Abel Foundation website by clicking here.
Bladder problems are not a subject that is openly discussed, hence there is a general lack of public knowledge on what it is like to have Mitrofanoff. Mitrofanoff Support offers emotional support and reassurance to anyone who may be about to have, or already has a Mitrofanoff and the people closest to them.
A multicystic dysplastic kidney (MCDK) is a kidney that has not developed normally in the womb. Instead of a working kidney, there is a bundle of cysts, which are like sacs filled with liquid.
Living with a neuromuscular condition can be a steep learning curve for both the child and the parent, but support is available. Find out more…
In nephrotic syndrome, the kidneys leak too much protein into urine, leading to a drop in the levels of protein in the blood. This causes swelling in the body,especially in the face, legs and feet. Find out more… About half of children with steroid-sensitive nephrotic syndrome (SSNS) have frequent relapses. This means that although the nephrotic syndrome gets better with steroids, it keeps coming back in a short space of time. Learn more about frequently relapsing nephrotic syndrome.
Neurofibromatosis type 1 is a condition that causes lumps called neurofibromas to grow on the covering of nerves. Although doctors sometimes call the lumps tumours, they are not cancer.
PIGN causes inflammation (swelling) in the kidneys. Children and young people with PIGN have blood and protein in their urine, and may have swelling in their body, especially around their face and legs. Find out more…
Proteinuria means there is an abnormal amount of protein in the urine (wee). Normally there is very little protein that is lost in the urine. Find out more…
Renal dysplasia (or kidney dysplasia) means that a kidney does not fully develop in the womb. The affected kidney does not have normal function – which means that it does not work as well as a normal kidney. It is usually smaller than usual, and may have some cysts, which are like sacs filled with liquid. Find out more…
Renal hypoplasia (or kidney hypoplasia) means that part of a kidney does not fully develop in the womb. The kidney may only be slightly smaller than usual or it may be tiny. Because of its size, it may not work as well as a normal-sized kidney. Find out more…
Advice on what you can do for your child if they have scoliosis or if they have just been diagnosed with it. Find out more…
The Sickle Cell Society provide a booklet containing all you need to know about sickle cell disease and how you can help your child. Download it here.
Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. Find out more…
Syncope (pronounced sin-co-pee) is a medical term for a blackout that is caused by a sudden lack of blood supply to the brain. Reflex syncope is one of the most common forms of syncope. Find out more…
Thalassaemia is a complex condition affecting the blood that requires constant monitoring and treatment.
An estimated 1 million people worldwide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood. Find out more…
A urinary tract infection (UTI) is a common infection that may cause your child pain when they pee. Sometimes it can result in a kidney infection. Find out more…
Von Willebrand disease is the most common type of bleeding disorder: it’s estimated that around 1% of the world population may be affected. It affects the blood’s ability to clot and can cause symptoms such as easy bruising, nosebleeds, and heavy periods. It may also be hard to stop bleeding after injury or surgery. Find out more…
There are many sensory issues associated with sleep including:
- Sensitivity to sound, touch, and visual stimuli which can be distracting and distressing and can affect the process of falling asleep.
- Interoception difficulties, particularly recognising when hungry, full or thirsty or when the person is tired.
- Some children are more sensitive to foods like sugar, caffeine and additives which keep people awake.
Look at the bedroom environment to see what may be affecting their ability to go to sleep and stay asleep. Do their pyjamas and bedclothes feel comfortable, are they too hot or cold? Is it too light or too dark, too noisy or too quiet? Perhaps it is too cluttered and stimulating. Think about your child’s diet. Are they eating too early or not having enough to eat? Are they eating food that can stimulate them close to bedtime. There can be added difficulties where children have restrictive diets but some simple adjustments of what is eaten and when can make a big difference.
Sticking to the same routine helps your child to know what to expect at bedtime and helps them feel secure. It also helps to support your child’s internal body clock and keep it on track. The age related sleep advice and information on this website can help with establishing routines. Some children will benefit from using picture timetables, timers or social stories to help them understand their bed-time routine. More information about visual supports can be found on these websites
Visual Resources | Autism West Midlands
Visual Supports | Autism Toolbox Autism Toolbox
Your child may be feeling overstimulated after a busy day and needs help to wind down, or their environment may be overstimulating with lots of toys, TVs and computers within reach. Avoiding TV and computers or hand-held devices an hour before bedtime can help your child to wind down. Activities that are good for the wind down period are jigsaws and colouring. Having a relaxing bath and milky drink can help some children, but for some children having a bath can over-excite them so they may need to have their bath earlier in the day.
Children who wake to use the toilet, wet the bed, or who wear nappies or pull-ups at night that need changing may have disturbed sleep. Eric, the children’s bowel and bladder charity are a good source of advice on this topic.
What might help
Keeping a sleep diary
A sleep diary can help you understand what may be causing difficulties with sleep. Fill it out every evening and record as much as you can. You can use it to spot patterns and make changes that may help.
The Sleep Charity have templates you can download; one for teenagers and one for younger children.
Seeking advice and help from sleep services
There are organisations that can help you if you are having difficulties with your child’s sleep. There are many national organisations, including those who specialise in sleep for SEND families, and there are also community-based services in Shropshire, Telford and Wrekin. Click the link at the bottom of page to visit our support services page.
Understanding sleep cycles
The circadian sleep cycle is a 24-hour cycle that helps govern essential bodily functions especially the sleep-wake cycle. It plays a vital role in a person’s ability to sleep in one consolidated block of time at night and to stay awake during the day. As the sun sets in the evening, the brain begins producing melatonin, a hormone that induces sleepiness. Core body temperature also drops.
As melatonin and tryptophan (an amino acid which helps produce melatonin) are naturally produced in the body, there are things you can do to help their production. Darkness helps to promote the production of melatonin which is why it is a good idea to put your child to sleep in a darkened room, and light emitting devices such as tablets and phones also can destroy Melatonin so should not be used for at least an hour before bed. New research shows that limiting exposure to screens and increasing physical activity levels during the day has a positive effect on children's overall physical, mental health and wellbeing, including sleep.
Setting a waking time consistently even in holiday times, called ‘anchoring’ the wake time, can help to reset the body clock over time. This should be accompanied with exposure to lots of light on waking to support circadian rhythm.
Melatonin and tryptophan occur naturally in some foods and drinks such as milky drinks and cereals which is why having a milky drink before bed can help settling to sleep. For more information visit Diet & Sleep - The Sleep Charity
Prescriptions of melatonin
Behavioural strategies and practical solutions are the best way to address sleep difficulties, but if they are having a significant impact on your child’s ability to function, a drug form of melatonin is sometimes prescribed for neurodivergent children. As the drug’s function is to re-set sleep and wake cycles, it works best combined with good sleep hygiene practices. It is important that is it taken under medical supervision and not purchased on-line so that it is closely monitored for dosage and side effects. It should be prescribed for the shortest period necessary as the long-term effects of the drug on children’s development are not yet known.
In Shropshire, Telford and Wrekin the Community Paediatric Service and the BeeU Service (CAMHS) can prescribe Melatonin for children and young people who meet ALL of the following criteria.
- the child/young person must be open to and being treated by the service due to a neurodevelopmental/mental health need (diagnosis not required)
- sleep issues are causing significant impact on the child/ young person, for example due to daytime sleeping or behavioural problems that are impacting daily functioning or educational attendance
- behavioural approaches have been tried and failed. These may have been offered by the service (where available) or by community sleep support services.
GPs are unable to prescribe Melatonin although they sometimes issue repeat prescriptions when prescribing has been started by a specialist (such as a paediatrician or child psychiatrist).
Further support
Click on the link below to visit a page with information about
- national websites and sleep organisations
- local community services in Shropshire, Telford and Wrekin.