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How to Help Your Child Live With Kidney Disease

Having kidney disease affects children in many ways. They may need to take medicines and alter their diet, and can also face challenges at school.

It’s only natural to worry if you have a child with kidney disease. Parents often have questions about their child’s health. We answer some of the most common ones.

It can be helpful for parents to talk to members of the renal team, such as the social worker or clinical psychologist. Other parents and patient support groups may also be able to help.

Can I give a kidney to my child?

As a parent, your first instinct may be to deal with your child’s condition by giving them one of your kidneys. Around half of all kidney transplants carried out are now from living donors.

Living organ donation usually involves one family member donating an organ to another family member or a partner. The relative is usually blood related – a parent, brother, sister or child. It’s possible for a healthy person to lead a completely normal life with only one working kidney.

Considering donating a kidney is a big step. It’s major surgery, and will only go ahead once strict rules are met and after a thorough process of assessment and discussion. Talk to your child’s renal team if you want to explore whether donation could be an option for you and your child.

Will my child grow normally?

The kidneys play an important role in a child’s growth, so children with kidney disease may not grow as well as their peers. To make the problem worse, their illness can make them feel sick, alter their sense of taste and reduce their appetite.

How to help

It’s important to make sure that children with kidney disease get enough nutrition. Talk to your child’s doctor about ways to help boost growth. Taking supplements and limiting certain foods while eating more fats and carbohydrates to increase calorie intake can help. Some children benefit from injections of growth hormone.

Will my child have a problem making friends?

Children with kidney disease can have trouble making friends and fitting in with children of their own age. This can be because they miss time off school.

It can also be because of a child’s natural concern that their kidney disease makes them different from other children. Children can lack confidence if they’re small for their age and their appearance has changed (for example, if they are bloated) as a result of their condition and its treatment.

How to help

Find ways to encourage your child to meet other children and make friends. They can meet other children through nurseries, playgroups, school and after-school clubs. Having children over for tea and sleepovers and, in the case of older children, using social networking sites, such as Facebook, can help encourage them to make friends.

Will my child have difficulties at school?

Kidney disease itself doesn’t usually cause problems with learning, but children who have had kidney disease from a young age may spend so much time in hospital that they struggle with schoolwork. They usually catch up as they get older.

How to help

If your child misses school, do all you can to help them with their schoolwork. Talk to their teachers as early as possible to make a homework plan that your child can get on with while they’re in hospital.

  • Make sure your child is getting as much extra educational support as possible from the school. The hospital teachers can also help and advise you.
  • If you have concerns about your child’s development or learning, talk to your child’s school.

Read more about how to talk to the school about your child’s health condition.

Should children with kidney disease do sport?

It’s tempting to be overprotective of a sick child. In general, sport and exercise is great for children with kidney disease. But bear in mind that they may get tired more easily than their friends and classmates.

How to help

Encourage your child to do all the activities their friends do. If your child is on dialysis, swimming might not be possible. In some cases, particularly after a kidney transplant, children should also avoid contact sports. Otherwise, they can safely take part in most sports.

What if my child refuses their medicine?

Taking medicines is part of life for most children and young people with kidney disease. They can find this a strain and may stop taking their medicines.

How to help

  • Try to work out why they don’t want to take their medicines. Children, especially teenagers, may stop taking their medicines because they can cause unflattering changes in appearance.
  • Talk to them about why taking their medicines is important for their health and what will happen if they don’t. Be careful not to scare your child into taking their medicines.
  • Explaining to older children and teenagers why they need to be responsible for taking their own medicines can make them more likely to keep taking their tablets.
  • It can also help to involve the renal team that’s looking after your child, as they will have lots of experience of tackling this problem with other children and young people.
  • It’s very important that you let the renal team know immediately if you think your child isn’t taking their medicines.

Who can my child talk to about kidney disease?

All children’s kidney teams have different professionals on hand to chat to your child. These include doctors, nurses, psychologists, social workers, play specialists, teachers and some youth workers.

How to help

Arrange for your child to talk to a member of the kidney team. It can also help if they meet a young adult who had chronic kidney disease during childhood, or another child of their own age. You can find contacts through your doctor, local support group, or the British Kidney Patient Association (BKPA)**.

How do I explain kidney disease to my other children?

Brothers and sisters of children with kidney disease may feel left out and worried. They need time with you to talk over their worries and feel part of the overall plan.

How to help

Your child’s kidney team is there to help the whole family. Ask the play specialist, psychologist or social worker to spend time talking to your child’s brothers and sisters and answering their questions.

Editor’s Note: *clarification provided for our US readers.

** Resources in the United States, the National Kidney Foundation  and the American Kidney Fund





Video: Is Your Child’s Rash Fifth Disease and Should You Worry?

In this video Dr. Rob Hicks, a general practitioner (GP) or family physician, briefly describes Fifth Disease or “Slapped Cheek Syndrome,” and how you can tell this rash apart from other more concerning illnesses.

Editor’s Note: Video Highlights

  • child-fifth diseaseFifth Disease – or “slapped cheek syndrome” is a viral infection, caused by the virus, parvovirus B19
  • It is spread in the air when we cough or laugh, when we sneeze, or in saliva and air droplets when we’re in close contact
  • It is most commonly children who get it – usually between the age of four and 12 – and can spread very rapidly throughout a classroom or school
  • The symptoms to look out for are generally those of a common cold,so sneezing, runny nose, sore throat, headache, fever.
  • But the characteristic of this infection is the rash – the blotchy red rash on one or both cheeks that gives the slapped cheek appearance
  • The rash can remain on the face, but could spread to the rest of the body,including the palms of the hands and the soles of the feet
  • Generally, it’s not painful but it might be irritating for some
  • Unlike the worrying rash of meningitis, if you press this rash it will fade
  • Symptoms are often mild and parents should follow the usual management of any viral infection,
    • Plenty of rest and plenty of fluids
    • For sore throats or a high temperature children’s paracetamol (acetaminophen) or ibuprofen is perfectly reasonable
  • If you’re not sure have a word with a pharmacist or with your doctor
  • The people who need to be concerned are pregnant women – if you get the infection in early pregnancy and you’ve not had it before it can increase the risk of miscarriage





Childhood Illnesses – Are We Winning The Battle?

As with any illness, it is best to prevent than to treat.  Our progress in battling some devastating childhood illnesses over the years has centered on the introduction and efficiency of our existing vaccines and effective preventive medications.

One of the first notable vaccines was that produced to prevent paralytic polio.   Early on this was an oral vaccine and we (of a certain age) can remember the sugar cubes given out in school followed in rapid order by oral and then injectable types of the vaccine. These obviously were very effective in eliminating the most dreaded form of polio- that which produced paralysis in children and young adults.  Again, some of us remember trying to fall asleep at night thinking of that terrible disease and the pictures of “iron lungs” (a type of whole-body respirator) lined up in the hallways of hospitals.  There was no treatment and as of today there is still no treatment.  However the severe clinical outcome has been erased.  Polio virus is still around today and is not uncommon but is such a mild illness that affected people may not even realize they might have it. (Very similar to many of our common every day illnesses)

Many of us also remember smallpox vaccine that left a puckered, stippled scar on the top of our shoulders.  As it began disappearing from the US due also to better and newer isolation techniques, it was noticed that there were more bothersome reactions than actual cases of small pox in this country.   Also worldwide there were fewer and fewer outbreaks that became controllable with the above mentioned isolation techniques.  Smallpox vaccine was discontinued.

With the advent of improved TB testing and effective medicines, a vaccine became unnecessary although the disease still exists, it is controllable and treatable.

Measles, mumps and German measles used to take its toll on primitive peoples of the world until there were effective vaccines that prevented the illnesses and sometimes the birth defects that would arise in babies born to women who had had German measles during pregnancy.

Hemophilus influenza is a common bacterium causing some illnesses in this country and around the world but the most dreaded of these was a virulent kind of meningitis (infection of the covering of the brain and spinal cord, leading to some life-long neurologic deficits in children and even death).  While I was in my training to become a Pediatrician a vaccine was developed to eradicate this illness and within a very short time the incidence of hemophilus meningitis dropped severely – today it is a rarity.

More recently we have seen the development of effective and efficient vaccines to help prevent influenza, chickenpox, hepatitis, meningitis, rabies, and the list is constantly increasing (this is not a complete list).  Along with this ongoing effort is the continued development of medications to help treat the rare illnesses that still crop up occasionally.

The bottom line is that we have many weapons at our disposal to defeat our viral and bacterial contagious diseases in children and adults but those who ignore the value of immunizations at an early age are not only placing their own children at risk but the childhood and adult population of the entire country.  Many of these illnesses are highly contagious and infectious but we must all work together to control and hopefully eventually eradicate these deadly microscopic enemies.

Video: How Big a Concern is Fever and Vomiting in Children?

In this short video, Dr Rupal Shah explains how to tell if your child’s fever and vomiting are a sign of a serious illness requiring medical attention or the result of a common virus with no cause for alarm.

Editor’s Note: Video Highlights

  • Fever and vomiting are common symptoms in childhood and there are many possible causes
  • fever-and-vomiting-in-kidsThe most important thing to consider is how well your child appears to be….
    • For example, if they’re quite drowsy and floppy or if they’re not eating, then there’s a higher chance that they could be seriously ill with a nasty infection and you should see your doctor
    • If your child appears fairly well and is still eating and drinking, is still playing and interested in their environment, then it’s less likely they are suffering from a serious illness
  • Also, if your child isn’t managing to tolerate any fluids you should take them to the doctor, since children get dehydrated quite easily
  • Fever and vomiting can be caused by fairly common viral illness, like a rotavirus infection – or tummy bug – and generally the child is relatively well and cheerful despite throwing up at times
  • However, there are more serious causes of fever and vomiting – ranging from a bladder infection all the way to meningitis
  • If you’re worried that your child is less responsive, more floppy, not themselves – then it’s always worth seeking urgent medical help





How to Recognize and Treat Headaches in Kids and Teens

Prof Anne MacGregor gives tips for parents on how to recognise and treat headaches in children.

headaches in kidsMost children and teenagers get at least one headache a year. They’re often different from the headaches that adults get, so parents and healthcare professionals can fail to notice the problem.

Headaches, including migraines, tend to be much shorter in children, according to Prof MacGregor of the Centre for Neuroscience and Trauma at Barts and the London School of Medicine and Dentistry.

In children, headaches start suddenly, with the child quickly becoming pale and listless, and often feeling sick and vomiting.

Children also generally recover very quickly. “The headache can be over half an hour later, with the child feeling well and playing outside as if nothing’s happened,” Prof MacGregor says.

Children’s headaches can also affect their stomach, so tummy ache is a common complaint, she says.

Skipping Lunch Causes Headaches in Children

“In my experience, children very rarely fake headaches,” says Prof MacGregor. “Children with headaches often get them if, for example, they skip their packed lunch or they haven’t had anything to drink all day.

“The best way for parents to prevent their children getting these headaches is to make sure they have regular meals and drinks, and that they get enough sleep,” says Prof MacGregor. “Give children a good breakfast so that, even if they miss lunch, they’ve been set up for the day. It’s also helpful to put children to bed at a fixed time each evening.”

Read more about healthy eating, including five healthy breakfasts.

Find out how many hours sleep a night your child needs.

Read advice on how much children need to drink.

Sport is a Headache Trigger for Children

Sport can trigger children’s headaches, probably because of dehydration and the effect on blood sugar. “Drinking lots of water and sucking glucose tablets (available from pharmacies and supermarkets) before and during sport can help. So can a mid-morning and mid-afternoon snack, as well as meals,” says Prof MacGregor.

Headaches and Childhood Emotional Problems

Sometimes, headaches can be the result of emotional problems. “They can come on during times of stress, like being bullied at school or because of anxiety over parents splitting up,” says Prof MacGregor. “Parents often think their child is fine, that they’re adjusting to the divorce and that they like their parent’s new partner. Sometimes, however, the child is not fine and their unhappiness is expressing itself as headaches.”

Find out if your child is depressed.

Keep a Headache Diary

It can be helpful to keep a diary of your child’s headaches. If your child is old enough, they can keep their own diary. This is a good way of working out specific headache triggers.

Keep a record of when the headaches happen. Also record any event that’s different from the normal routine or that might be relevant. This could be a missed meal, sports activity or a late night, or an emotionally upsetting incident, such as a stressful exam or an argument with friends or parents.

After a few months, look through the diaries together with your child to see if there’s a pattern of triggers that could be causing the headaches.

Download a headache diary from The Migraine Trust

Once you’ve identified possible causes, get your child to avoid them one at a time over the next few months to see if this prevents the headaches.

Headache Self Help Tips for Kids

Often, simple steps will be enough to help your child through a headache or migraine attack:

  • Lie them down in a quiet, dark room.
  • Put a cool, moist cloth across their forehead or eyes.
  • Get them to breathe easily and deeply.
  • Encourage them to sleep, as this speeds recovery.
  • Encourage them to eat or drink something (but not drinks containing caffeine).

If you think your child needs painkillers, start the medicine as soon as possible after the headache has begun. Paracetamol (*acetaminophen/Tylenol) and ibuprofen are both safe and work well for children with headaches. The syrups are easier for children to take than tablets. Alternatively, try Migraleve, a pharmacy remedy that treats migraine and is suitable for children aged over 12 (*may not be available in all countries – not available in the USA).

When to See a Doctor for Your Child’s Headaches

As with adults, most headaches in children aren’t a serious health problem. They can be treated at home with pharmacy remedies and avoided by making sure children get enough food, drink and sleep.

But don’t delay consulting a doctor or pharmacist if you’re worried about your child’s headaches, says Prof MacGregor. “I’d advise parents to seek help if their child hasn’t been helped by painkillers or if the headaches are interfering with schoolwork. It’s important for these children to get the all-clear from a doctor.”

Here is information from The Brain Tumour Charity’s HeadSmart campaign on how to recognise the symptoms of brain tumours in children.

Read more about how to treat common conditions using your local pharmacy.

Editor’s Note: *clarification provided for our US readers.

 

 





Video: Kids and Cancer – What You Need to Know About ALL

Dr Victoria Grandage, Consultant Hematologist at the Children and Young People’s Cancer Service at University College London, describes the signs and symptoms of Acute Lymphoblastic Leukemia, also known as A.L.L. She and the mother of a young former patient, Josh, talk about the treatment and experience of ALL; a cancer that, thankfully, has a high cure rate in children. Click on the picture below to go to the NHS YouTube channel to watch the video.

Editor’s Note: Video Highlights

  • Acute lymphoblastic leukaemia or ALL is a form of cancer of the blood
  • For reasons we do not yet fully understand, immature cells in the bone marrow – lymphocytes or lymphoblasts – rapidly build up and crowd out the normal bone marrow cells
  • Some of the symptoms of ALL include:
    • Anemia: tiredness, shortness of breath, lethargy
    • Infections, high fevers, maybe mouth ulcers
    • Bleeding, bruising and rashes
    • Enlargement of some lymph nodes around the neck or in the groin
    • Enlargement of the liver and spleen
    • Bone pain (a prominent symptom)

“When Josh was about two and a half, he went back to crawling rather than walking. He’d say his legs were too sore to walk and he’d crawl around for the first half hour or so (after getting up) and then start walking after that.”                                    Josh’s Mom, Angela

  • child with cancerInitial treatment, before a diagnosis has been confirmed, is supportive to address the above symptoms and can include fluids for hydration, antibiotics, and possibly a blood transfusion
  • Treatment of the leukemia itself involves chemotherapy, a broad term for many different drugs that may be given in tablet form, as injections, or directly into the blood stream as IV infusions
    • Some ALL chemotherapy drugs are also given via a lumbar puncture
  • Side effects of the chemotherapy include nausea, tiredness, and hair loss
  • Treatment begins with acute therapy – for Josh this lasted 9 months – and is followed by maintenance treatment for a couple of years
    • Josh’s total treatment lasted three years
  • The majority of children with ALL go into remission – and 75%-80% of those are cured
  • Further intensified treatment, including a stem cell transplant, may be required for children who do not go into remission

 





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