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Sometimes, children and young people show concerning behaviour when they are trying to communicate something important about the way they are feeling, but cannot find the words. Over time, behaviour can become 'learnt' because of the preditable reactions of others. At the most simple and common level, for example, if a parent gives in to a young child crying for a toy, the child will soon learn that the behaviour of crying will get the result they want and they will transfer the behaviour to other situations.

At a more challenging level, a child or young person may show self-injury or violence to express what they cannot with words. It is usually fear or anger that causes this behaviour. It is important to understand what feeling is driving the behaviour. The behaviour can be made worse by other factors, such as the level of demand, hunger, pain, personal loss or trauma, for example.

We have put together a download of top tips that you might find helpful as well as video of a workshop on how to manage concerning behaviour.

There are a number of resources that may also be helpful to you and your child in better understanding the function of the behaviour and how to support them to find better alternatives.

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When should you worry?

CAMHS Behaviour of Concern Referral Guidance

What we do, what we don’t do and what you can do if you are worried about your child

All behaviour has meaning. Children and young people communicate through their behaviour, especially those who have not acquired language and vocabulary skills to tell the adult what the problem is. A young person’s behaviour can be made stronger and more likely by how it is responded to. Here’s a guide to help you know how best to support your young person if they are behaving in a way that is concerning. This is not an exhaustive list; there may be other behaviour and responses to this which have not been included:

12-18 months

12-18 MONTHS

Contact your health visitor or GP if your baby is 12-18 months and they…

  • Have lost skills which they could do before
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own
    • You find it difficult to move your baby’s arms or legs, making it tricky to change their nappy or clothes
  • Feel very floppy when they are awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag their leg or foot when crawling or walking
    • Use one arm to pull to stand more than the other
    • Rarely use one of their arms to pick up toys, or eat and drink
  • Finds it hard to stand or walk, for example:
    • Can’t pull to stand
    • Fall over a lot when standing still
    • Doesn’t cruise (walk while holding on to furniture)
    • Walk on their tiptoes a lot

18-24 months

18-24 MONTHS

Contact your health visitor or GP if your baby is 18-24 months and they…

  • Have lost skills which they could do before
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own
    • You find it difficult to move your baby’s arms or legs, making it tricky to change their nappy or clothes
  • Feel very floppy when they are awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag their leg or foot when crawling or walking
    • Use one arm to pull to stand more than the other
    • Rarely use one of their arms to pick up toys, or eat and drink
  • Find it hard to balance when standing still, or fall over a lot
  • Can’t walk by themselves
  • Walk on their tiptoes a lot
  • Are suddenly unsteady when walking

2 years

2 YEARS

Contact your health visitor or GP if your baby is 2 years and they…

  • Have lost skills which they could do before
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own
    • You find it difficult to move your child’s arms or legs, making it tricky to change their nappy or clothes
  • Feel very floppy when awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag one leg or foot behind them when crawling or walking
    • Rarely use one of their arms to play, eat and drink
  • Find it hard to balance when standing still or fall over a lot
  • Can’t walk by themselves
  • Mostly walk on their tiptoes
  • Are suddenly unsteady when walking
  • Haven’t started to run
  • Move from laying down or sitting to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing, this is called Gowers sign as demonstrated in the image below:
Picture 5, Picture

3 years

3 YEARS

Contact your health visitor or GP if your baby is 3 years and they…

  • Have lost skills which they could do before 
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own
    • You find it difficult to move your child’s arms or legs, making it tricky to change their clothes
  • Feel very floppy when awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag one leg or foot behind them when walking
    • Rarely uses one of their arms to play, eat and drink
  • Find it hard to balance when standing still or fall over a lot
  • Can’t walk by themselves
  • Mostly walk on their tiptoes
  • Are suddenly unsteady when walking
  • Have not started to jump or run
  • Move from laying down or sitting to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing, this is called Gowers sign as demonstrated in the image below:
Picture 5, Picture

4 years

4 YEARS

Contact your health visitor or GP if your baby is 4 years and they…

  • Have lost skills which they could do before
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own
    • Find it tricky to change their clothes
  • Feel very floppy when awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag one leg or foot behind them when walking
    • Rarely use one of their arms to play, eat and drink
  • Find it hard to balance when standing still 
  • Suddenly become unsteady when walking
  • Find it hard going upstairs or uphill
  • Trip or fall a lot
  • Walk on tiptoes most of the time
  • Feel pain in their arms or legs
  • Move from laying down or sitting on the floor to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing, this is called Gowers sign as demonstrated in the image below:
Picture 5, Picture

5 years

5 YEARS

Contact your health visitor or GP if your baby is 5 years and they…

  • Have lost skills which they could do before
  • Feel very stiff, for example:
    • Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
    • Find it difficult to change their position on their own 
    • Find it tricky to change their clothes
  • Feel very floppy when awake
  • Move their arms or legs in repetitive, jerky, or strange ways
  • Use one side of their body more than the other, for example:
    • Lean to the side when they sit
    • Drag one leg or foot behind them when walking
    • Rarely uses one of their arms to play, eat and drink
  • Find it hard to balance, or trip or fall a lot
  • Persistently walk on tiptoes  
  • Suddenly become unsteady when walking
  • Feel pain in their arms or legs
  • Move from laying or sitting on the floor to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing, this is called Gowers sign as demonstrated in the image below:
Picture 5, Picture

12 months

Your Child By TWELVE Months

Social/Emotional Milestones

  • Copies other children while playing, like taking toys out of a container when another child does
  • Shows you an object she likes
  • Claps when excited
  • Hugs stuffed doll or other toy
  • Shows you affection (hugs, cuddles, or kisses you)

Language/Communication Milestones

  • Tries to say one or two words besides “mama” or “dada,” like “ba” for ball or “da” for dog
  • Looks at a familiar object when you name it
  • Follows directions given with both a gesture and words. For example, he gives you a toy when you hold out your hand and say, “Give me the toy.”
  • Points to ask for something or to get help

Cognitive Milestones (learning, thinking, problem-solving)

  • Tries to use things the right way, like a phone, cup, or book
  • Stacks at least two small objects, like blocks

Movement/Physical Development Milestones

  • Takes a few steps on his own
  • Uses fingers to feed herself some food

18 months

Your Child By Eighteen Months

Social/Emotional Milestones

  • Moves away from you, but looks to make sure you are close by
  • Points to show you something interesting
  • Puts hands out for you to wash them
  • Looks at a few pages in a book with you
  • Helps you dress him by pushing arm through sleeve or lifting up foot

Language/Communication Milestones

  • Tries to say three or more words besides “mama” or “dada”
  • Follows one-step directions without any gestures, like giving you the toy when you say, “Give it to me.”

Cognitive Milestones (learning, thinking, problem-solving)

  • Copies you doing chores, like sweeping with a broom
  • Plays with toys in a simple way, like pushing a toy car

Movement/Physical Development Milestones

  • Walks without holding on to anyone or anything
  • Scribbles
  • Drinks from a cup without a lid and may spill sometimes
  • Feeds himself with his fingers
  • Tries to use a spoon
  • Climbs on and off a couch or chair without help

2 years

Your Child By Two Years

Social/Emotional Milestones

  • Notices when others are hurt or upset, like pausing or looking sad when someone is crying
  • Looks at your face to see how to react in a new situation

Language/Communication Milestones

  • Points to things in a book when you ask, like “Where is the bear?”
  • Says at least two words together, like “More milk.”
  • Points to at least two body parts when you ask him to show you
  • Uses more gestures than just waving and pointing, like blowing a kiss or nodding yes

Cognitive Milestones (learning, thinking, problem-solving)

  • Holds something in one hand while using the other hand; for example, holding a container and taking the lid off
  • Tries to use switches, knobs, or buttons on a toy
  • Plays with more than one toy at the same time, like putting toy food on a toy plate

Movement/Physical Development Milestones

  • Kicks a ball
  • Runs
  • Walks (not climbs) up a few stairs with or without help
  • Eats with a spoon

2.5 years

Your Child By Thirty Months

Social/Emotional Milestones

  • Plays next to other children and sometimes plays with them
  • Shows you what she can do by saying, “Look at me!”
  • Follows simple routines when told, like helping to pick up toys when you say, “It’s clean-up time.”

Language/Communication Milestones

  • Says about 50 words
  • Says two or more words together, with one action word, like “Doggie run”
  • Names things in a book when you point and ask, “What is this?”
  • Says words like “I,” “me,” or “we”

Cognitive Milestones (learning, thinking, problem-solving)

  • Uses things to pretend, like feeding a block to a doll as if it were food
  • Shows simple problem-solving skills, like standing on a small stool to reach something
  • Follows two-step instructions like “Put the toy down and close the door.”
  • Shows he knows at least one color, like pointing to a red crayon when you ask, “Which one is red?”

Movement/Physical Development Milestones

  • Uses hands to twist things, like turning doorknobs or unscrewing lids
  • Takes some clothes off by himself, like loose pants or an open jacket
  • Jumps off the ground with both feet
  • Turns book pages, one at a time, when you read to her

3 years

Your Child By Three Years

Social/Emotional Milestones

  • Calms down within 10 minutes after you leave her, like at a childcare drop off
  • Notices other children and joins them to play

Language/Communication Milestones

  • Talks with you in conversation using at least two back-and-forth exchanges
  • Asks “who,” “what,” “where,” or “why” questions, like “Where is mommy/daddy?”
  • Says what action is happening in a picture or book when asked, like “running,” “eating,” or “playing”
  • Says first name, when asked
  • Talks well enough for others to understand, most of the time

Cognitive Milestones (learning, thinking, problem-solving)

  • Draws a circle, when you show him how
  • Avoids touching hot objects, like a stove, when you warn her

Movement/Physical Development Milestones

  • Strings items together, like large beads or macaroni
  • Puts on some clothes by himself, like loose pants or a jacket
  • Uses a fork

4 years

Your Child By Four Years

Social/Emotional Milestones

  • Pretends to be something else during play (teacher, superhero, dog)
  • Asks to go play with children if none are around, like “Can I play with Alex?”
  • Comforts others who are hurt or sad, like hugging a crying friend
  • Avoids danger, like not jumping from tall heights at the playground
  • Likes to be a “helper”
  • Changes behavior based on where she is (place of worship, library, playground)

Language/Communication Milestones

  • Says sentences with four or more words
  • Says some words from a song, story, or nursery rhyme
  • Talks about at least one thing that happened during her day, like “I played soccer.”
  • Answers simple questions like “What is a coat for?” or “What is a crayon for?”

Cognitive Milestones (learning, thinking, problem-solving)

  • Names a few colors of items
  • Tells what comes next in a well-known story
  • Draws a person with three or more body parts

Movement/Physical Development Milestones

  • Catches a large ball most of the time
  • Serves herself food or pours water, with adult supervision
  • Unbuttons some buttons
  • Holds crayon or pencil between fingers and thumb (not a fist)

5 years

Your Child By Five Years

Social/Emotional Milestones

  • Follows rules or takes turns when playing games with other children
  • Sings, dances, or acts for you
  • Does simple chores at home, like matching socks or clearing the table after eating

Language/Communication Milestones

  • Tells a story she heard or made up with at least two events. For example, a cat was stuck in a tree and a firefighter saved it
  • Answers simple questions about a book or story after you read or tell it to him
  • Keeps a conversation going with more than three back-and-forth exchanges
  • Uses or recognizes simple rhymes (bat-cat, ball-tall)

Cognitive Milestones (learning, thinking, problem-solving)

  • Counts to 10
  • Names some numbers between 1 and 5 when you point to them
  • Uses words about time, like “yesterday,” “tomorrow,” “morning,” or “night”
  • Pays attention for 5 to 10 minutes during activities. For example, during story time or making arts and crafts (screen time does not count)
  • Writes some letters in her name
  • Names some letters when you point to them

Movement/Physical Development Milestones

  • Buttons some buttons
  • Hops on one foot
RED
AMBER
AMBER
Green

GREEN

Coping / needs support; These are experiences that most young people will have from time to time.

Type and nature of situation that may impact on a young person’s behaviour

It is common for children and young people to behave in ways that concern adults from time to time. Examples of situations which might provoke these feelings include:

  • Not feeling heard or understood; difficulties expressing themselves.
  • Demands being made (and having to do things they don’t feel able or want to do).
  • Perceived or real pressure or expectations by others.
  • Uncertainty and unpredictability (such as the way adults respond).
  • New/ unfamiliar things and change/ transition.
  • Inconsistency (such as; inconsistent rules or boundaries, disrupted or chaotic routines and living environment).
  • Conflict (either witnessing this or being part of this).
  • Perceived or real rejection or abandonment by others.
  • Perceived or real being ostracised (being left out) and not having or feeling connected to others.
  • Low self-esteem and beliefs of being a failure/ not being good enough.

Factors such as tiredness, hunger, not feeling physically or being in pain well can impact on how young people cope, respond and behave.

Some young people with physical disabilities and conditions, learning disabilities or those with neurodevelopmental difficulties (such as Autistic Spectrum Condition or Attention Deficit Hyperactivity Disorder) may have additional difficulty in being able to identify, express and communicate their emotions, thoughts, needs or preferences. This struggle may result in strong emotional responses and behaviour of concern.

What you might see or a young person might report

  • Appearing unsettled, distracted or irritable.
  • May appear more challenging or oppositional/ argumentative.
  • Shouting or verbally aggressive (e.g., name calling, swearing).
  • Crying or becoming distressed.
  • Not telling the truth.
  • Avoidance of or refusal to doing things when asked or expected.
  • Withdrawal from spending time with friends or family or persistently seeking reassurance.
  • Having bad dreams/ mild sleep disturbance.
  • Having some physical symptoms such as feeling sick, hot and clammy, tummy aches.
  • Appearing restless and fidgeting.

Things to try, support and Next Steps

  • Normalise that having feelings such as worry, sadness, frustration, guilt or shame are natural emotions and responses to events and situations.
  • Try to identify the situation which has led to the young person experiencing a strong emotional response. It may be possible to problem solve the situation. If not, acknowledge and validate the young person’s feelings.
  • Make sure basic needs have been addressed e.g., the young person is getting good quality and enough sleep, is not thirsty or hungry and is not feeling unwell or is in pain.
  • Ensure that messages, rules and boundaries, language and adult behaviour is consistent, reliable and predictable.
  • Prepare young people for change, transition, unfamiliarity or unpredictability (e.g., give warning, discuss worries and concerns, problem solve how to do things, offer support).
  • Give children limited options (i.e., choose this or that)- as too much choice can be overwhelming.
  • Ensure routines in the morning and evening.
  • Stay calm and be clear in your own communication. Avoid getting into lengthy debates, explanations or arguments.
  • Use techniques to help young people manage their emotional responses in more helpful ways here are some strategies to try;

An A-Z of coping strategies: https://youtu.be/5EXpkVw3fh0

How and when to use a coping box: https://youtu.be/OyfgodSSdV4

  • Role model and demonstrate that you can do things even when you experiencing strong emotions and have urges to respond or behave in certain ways. Young people often learn and copy language and behaviour that they experience so try to respond in ways that role model to the young person.
  • Watch our parent/ carer workshop on Coping and Resilience Skills here: Film to be added
  • Watch our parent/ carer workshop on Challenging Behaviour: https://youtu.be/RMPn3gTEh5Q
  • Download our top tips sheet for parents on how to manage challenging behaviour Film to be added

AMBER

Needs help; These are challenges that some young people experience and may need some support with.

Type and nature of situation that may impact on a young person’s behaviour

More concerning behaviour may (or may not) be in response to events such as:

  • An upsetting or traumatic life event or repeated upsetting or traumatic events (e.g., bullying).
  • Feeling threatened through experiencing abusive behaviour (neglect, emotional, physical, sexual, financial).
  • Unpredictable and distressing environments (witnessing aggression/ violence).
  • A result of misusing elicit substances (e.g., drugs or alcohol).

In some cases behaviour of concern may be in response to a mental health difficulty or crisis.

What you might see or what a young person might report

As well as the features in Green, the following might also be present:

  • Resistance to doing things; requiring a lot of cajoling or persuading.
  • “fight or flight” responses such as becoming distressed or agitated, running away/ hiding or becoming verbally or physically aggressive towards others including intimidating and threatening behaviour.
  • Shutting down and becoming uncommunicative; withdrawing and not engaging with others or in activities they previously would.
  • Telling others information which is concerning and not factually correct.
  • Disrupted sleep (difficulties getting to or staying asleep, nightmares/ night terrors).
  • Persistent physical or verbal seeking reassurance.
  • Some episodes of panicking such as getting distressed, racing heart rate, quicker breathing, upset tummy, feeling sick, feeling dizzy or faint.
  • Demanding things be done in certain ways or requesting others to do things for them.
  • Engaging in impulsive, reactive or risky or potentially harmful activities such as substance usage (drugs and alcohol), risky sex (including online sexual activity), petty crime.
  • Truancy/ not attending or engaging at school/ college.
  • Families might also find themselves struggling to do things as they normally would as they may make adjustments to accommodate how the young person is feeling or responding.

Things to try, support and Next Steps

As well as the steps in Green the following might be helpful:

  • Watch our parent/ carer workshop on how to support anxiety here: https://youtu.be/LMFQHABnH1M
  • Share concerns with your child’s school/ college. Work on a plan together so there is a consistent approach from all adult care givers.
  • Access pastoral support from school/ college. Discuss with your child’s school accessing the Primary Behaviour Service.
  • Consider accessing help from a local counselling service.
  • Seek advice, guidance and support from Young Minds Parent Helpline:

08088025544

Depending on the context and/ or the triggers and contributing factors for the emotional responses and behaviour of concern, other services may be helpful e.g., family guidance if there is family breakdown or conflict.

RED

Needs Specialist Treatment or a Crisis Response; These are difficulties that cause a significant impact and a young person may need specialist support.

Type and nature of situation that may impact on a young person’s behaviour

Despite trying advice in the Green and Amber stages, the young person still experiences behaviour of concern.

More extreme or concerning behaviour may (or may not) be in response to events such as:

  • An upsetting or traumatic event or repeated upsetting, threatening or traumatic events (e.g., bullying).
  • Abuse (emotional, physical, sexual, financial).
  • A result of misusing elicit substances (e.g., drugs or alcohol).
  • In some cases behaviour of concern may be indicative of a mental health difficulty or crisis.

What you might see or what a young person might report

The features in Green and Amber may be more frequent and intense plus, the following might also be present:

  • Persistent refusal to leave the house or attend/ take part in activities such as school, hobbies, interests, seeing friends.
  • Significant impact on health and wellbeing such as not sleeping or eating for a sustained period of time. May show signs of physical compromise (ill health) as a result of this.
  • Withdrawn and uncommunicative or not wanting to be left alone at all- this may seem uncharacteristic or age inappropriate for some teenagers.
  • Becoming agitated, distressed, oppositional or aggressive towards others (including verbal and physical aggression/ violence towards others).
  • Age inappropriate sexual activity/ behaviour (particularly for young people aged 16years and under).
  • Reactive and impulsive behaviour such as running away which may place them or others in danger.
  • Criminal behaviour.
  • Families will find themselves struggling to do things as they normally would, that family functioning is disrupted and they are required to make significant adjustments to accommodate how the young person is feeling or responding

Things to try, support and Next Steps

As well as the steps in Green and Amber the following might be helpful:

  • If a young person or someone else is in immediate danger with potential for harm, you must consider contacting the emergency services (Police and or ambulance).
  • Speak with your child’s GP.
  • Speak with your child’s school/ college and the School Nursing Team and or the pastoral department.
  • Depending on the context and/ or the origins of the emotions being experienced and the nature of the behaviour of concern, other services may be helpful. There may be a role for other services such as Children’s Services or other statutory or voluntary organisations that can support if there are clear triggers for the behaviour of concern e.g., abuse, domestic violence etc.

08088025544

  • Consider making a self-referral to a CAMHS Service.

Please note, that CAMHS may only provide an assessment and offer an intervention if the behaviour or concern is in relation to a mental health difficulty or crisis.

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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.

Haemophilia

By the time you are a teenager, you may already be used to living with a bleeding disorder. However not all people with bleeding disorders are diagnosed earlier on in life, and a bleeding disorder may be entirely new for you. The information here should be able to reassure you about your bleeding disorder, and let you get on with the enjoyment of being a teenager..

Heart conditions

If you have a congenital heart condition, you might feel like you don't want to know every detail because it scares you. In fact you're not alone - many adults feel the same way. Find out more…

Henoch- Schonlein purpura (HSP)

Henoch-Schönlein purpura (HSP) is a condition that affects different parts of the body. Tiny blood vessels in the body become inflamed or swollen.

HIV

It’s difficult being a young person with HIV but you’re not alone. Hear the experiences of other young people living with HIV. Find ways of accessing local support as well as the Body & Soul Beyond Boundaries programme.

Click here to watch a video from the BBC called HIV Positive: Seriously, you can't catch it from kissing.

Hydrocephalus

If you’re a teenager or young adult affected by hydrocephalus, it’s important to remember that you’re not alone. You’ll find useful information to help you overcome the different challenges you may face.

Hypertension

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…

I

Inflammatory Bowel Disease

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….

Info about your child's medication

M

Medical ID and alert products

Don’t let a medical condition change your life. Change the way you deal with it – by living as best you can with the security of a Medi band or Medic alert medical ID bracelet or wristband.

Metabolic conditios

Climb is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.

Mitochondrial disease

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.

Mitrofanoff

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.

Multicystic dysplastic kidney (MCDK)

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. Find out more

Muscular Dystrophy

Living with a neuromuscular condition can be a steep learning curve, but support is available. Find out more…

N

Nephrotic syndrome

In nephrotic syndrome, the kidneys leak too much protein into the 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

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. This information sheets offers you some facts and advice to help you.

P

Post-infectious glomerulonephritis (PIGN)

PIGN causes inflammation (swelling) in the kidneys. 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…

Primary immunodeficiency

If you are a young person with a primary immunodeficiency, there are probably loads of questions you’d like to know the answers to, things you maybe feel a bit embarrassed to ask about or you simply don’t know who to ask. Learn more here…

Proteinuria

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…

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Renal dysplasia

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

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…

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Scoliosis

Advice on what you can do if you have scoliosis or if you have just been diagnosed with it. Find out more…

Sickle Cell Disease

Advice for young people living with sickle cell disease. You are not alone. Click here for more information.

Spina bifida

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

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…

T

Thalassaemia

Thalassaemia is a complex condition affecting the blood that requires constant monitoring and treatment. However, it is no longer just a disease of childhood; with our current level of knowledge, of treatment, of support and care there is no reason for a young person with thalassaemia to not reach their full potential.

Tuberous Sclerosis

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…

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Urinary tract infection (UTI)

A urinary tract infection (UTI) is a common infection that may cause you pain when you pee. Sometimes it can result in a kidney infection. Find out more…

V

Von Willebrand Disease

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…