Childhood AML symptoms and diagnosis

Updated 10 Aug 2017

There are a range of signs and symptoms your child might get. A lot of them can be hard to spot, as they’re similar to the symptoms they might get for a range of other illnesses. It’s important to remember that not everyone will get all of the symptoms listed in this section – each child is different.

If your child’s doctor suspects AML, your child will have a set of tests to confirm their diagnosis. It’s important that you understand your child’s diagnosis – it might be a good idea to ask your consultant to write it down so you can use it if you’re looking for more information or support, or if you need to tell other people about it.

Signs and symptoms

There are a range of signs and symptoms your child might get. A lot of them can be hard to spot, as they’re similar to the symptoms they might get for a range of other illnesses. The important thing is to look out for symptoms that last longer than normal or seem out of the ordinary.

It’s important to remember that not everyone will get all of the symptoms listed in this section – each child is different.

What to look out for

  • Your child may look pale and complain of feeling tired and breathless. This is due to low levels of oxygen-carrying red blood cells (haemoglobin). This condition is known as anaemia.
  • Your child may get infections easily. This is because their body is producing abnormal white blood cells, so their levels of healthy, infection-fighting white blood cells are low.
  • Watch out for a lot of bruises or unusual bleeding. Look out for bleeding gums and nose bleeds – this is because your child may have low levels of platelets (the cells that are needed in blood clotting).
  • Your child may complain of bone pain. This is due to the leukaemia cells overcrowding in the bone marrow.

Other symptoms

Less common signs and symptoms may be caused by the leukaemia cells (the abnormal blood cells or cancer cells) spreading into other tissues. You may hear your child’s doctor talk about:

  • enlarged lymph nodes (glands): it’s quite rare to get these, but if they occur it can be anywhere – they’re usually most noticeable in the neck
  • enlarged liver or spleen: this can cause stomach pain
  • swollen gums
  • chloromas (collections of leukaemia cells, often under the skin)
  • leucostasis – this happens when there are large numbers of leukaemia cells in the blood; it can cause changes in vision, an altered level of consciousness (drowsiness) and breathlessness.

Tests and diagnosis

Your child will need several tests to diagnose AML. Some will be repeated on a regular basis to help doctors monitor their progress.

There are different types of AML, so it’s really important that you know your child’s exact diagnosis.

Tests to diagnose AML

AML is diagnosed by tests on blood, bone marrow and cerebrospinal fluid (CSF), the fluid in which the brain and spinal cord are bathed. It will usually take a few days for all the diagnostic tests to be completed, but there’s rarely any doubt about a diagnosis of childhood AML.

You can ask, at any time, for an explanation of why a particular test is being done and what the results mean.

Blood tests

Blood tests can provide doctors with a lot of information about your child’s condition.

The main blood test is called a full blood count. It measures the number and type of red blood cells, white blood cells and platelets, and will show if there are any leukaemia cells present. You may also hear these terms:

  • flow cytometry: this studies the physical and chemical characteristics of blood as it passes through laser beams; it can measure the number and type of cells in a sample
  • morphology (or morphologic analysis): this refers to what the cancerous cells look like under the microscope.

Bone marrow sample

Blood cells are made in the bone marrow, so there may be leukaemia cells there even if the blood sample is normal. A bone marrow sample can confirm a diagnosis and show what type of AML your child has.

Using a needle, a small amount of bone marrow is taken (aspirated) from the pelvis. This is usually done under general anaesthetic.

Doctors may also remove a small core of bone marrow (trephine biopsy) to examine the structure of the bone marrow, the number and type of blood cells and, if present, leukaemia cells.

Additional tests

Once doctors have the blood and bone marrow samples they need, they’ll do a range of laboratory tests to find out the type of AML your child has and the best treatment for it. You may hear these terms being mentioned:

  • cytogenetic analysis tests: these look for any abnormality in the chromosomes in your child’s leukaemia cells
  • molecular tests: these look for specific genetic faults which can give an indication of how likely the leukaemia will respond to treatment – they can also be used for monitoring response to treatment and can sometimes give an indication that the leukaemia may respond to newer drugs
  • immunophenotyping: this looks for the proteins produced by some leukaemia cells – on the aspirate this is done by flow cytometry.

Lumbar puncture

This procedure (sometimes called a spinal tap) is done to look for leukaemia cells in the cerebrospinal fluid (CSF). This is the fluid that surrounds your brain and spinal cord. A sample of CSF is taken through a needle inserted into the spinal column, in the space below the spinal cord. The procedure is usually done under a general anaesthetic.

Minimal residual disease monitoring (MRD)

This test is becoming more common for AML. Your child will have one when they’re first diagnosed, then others during their treatment, so doctors can measure how well they’re responding to it.

The test looks at a bone marrow sample and detects how many leukaemia cells remain in the bone marrow after treatment. When your doctors look at blood cells through a microscope, the lowest number of leukaemia cells they can detect is about one leukaemia cell in 20 normal cells. The MRD test is much more sensitive and can detect leukaemia cells at levels as low as one leukaemia cell in 100,000 normal cells.

The results of the MRD test will help your doctors decide how much treatment your child needs, and it may help them to predict how successful their whole treatment programme will be.

Additional tests and scans

After your child is diagnosed with AML, more tests are needed to monitor the cancer cells, measure your child’s response to treatment and check for possible complications and infections.

Liver function tests

Your child’s doctor will do these tests on your child’s blood sample, to check that their liver is working normally. This is an important test if your child is having chemotherapy because many drugs are broken down by the liver. This test checks how well the liver will be able to break down the drugs they’re going to be given.

Urea and electrolytes tests

This blood test checks how well your child’s kidneys are working. These are needed to make sure that neither the cancer nor the treatment is causing any kidney damage, and can also show if your child is dehydrated.

X-rays and scans (imaging)

Imaging tests include X-rays and scans to create pictures of what’s happening inside your child’s body. Your child may have scans if their healthcare team thinks they have an infection; if this is the case during their treatment, your child may have scans then too.

A trained play therapist will prepare your child for their scans by rehearsing what will happen to them; when children feel supported and know what to expect, they are less likely to be anxious. Very young or anxious children may be given a sedative (put to sleep for a short time).

You may be able to stay with your child during scans, unless you’re pregnant. Ask the radiographer (the person who takes and assesses the images) for advice.

This isn’t a complete list of tests; your child may need other scans such as an ultrasound or a bone scan. Your healthcare team can explain these scans to you, if your child needs them.

Chest X-ray

A chest X-ray can show up enlarged lymph nodes or if your child has a chest infection.

CT scan

A CT (computed tomography) scan is a form of X-ray that produces a detailed picture of the inside of the body. Your child’s doctor may do this scan to see if the lymph nodes, liver or spleen are enlarged.

A CT scan isn’t painful and only takes 5–10 minutes. Your child will lie on a table that moves into a cylindrical tunnel where the images are taken. Your child is never completely enclosed by the machine and will be able to talk to the radiographer all the time. Your child may need to have special dye injected into a blood vessel to get a better image.

MRI

An MRI (magnetic resonance imaging) scan shows up soft tissues (non-bony parts) and uses radio waves rather than X-rays. This test is rarely done for AML, but may be used to look at the brain and spinal cord and detect whether the leukaemia has spread to those areas.

For an MRI scan, your child will need to lie on a table that moves through the scanner. Again, it isn’t painful but it can take up to an hour to complete and some children may find it claustrophobic. As with a CT scan, your child may need to have special dye injected into a blood vessel to get a better image.

Your child's healthcare team

If your child is diagnosed with AML, your hospital should give you the names and contact details of their consultant, clinical nurse specialist and other members of their healthcare team – it's a good idea to write them down. You can then contact the team if you have any questions when you’re not at the hospital.

Children with AML usually stay in a specialist treatment hospital while they’re being diagnosed and throughout their treatment. The specialist centre will stay in charge of their treatment, and will see your child regularly.

Your child’s consultant

Most children with leukaemia, or blood cancer, are treated by a paediatric haematologist (a doctor who specialises in treating children with blood disorders) or a paediatric oncologist (a doctor who specialises in treating children with cancer). Either way, your hospital consultant will be an expert in treating your child’s condition.

Your child’s clinical nurse specialist

All children with AML will be given a key worker, usually a clinical nurse specialist (CNS). This nurse will be your point of contact with the rest of your child’s healthcare team.

The CNS will care for your child as they go through their treatment; they’ll become important to you and your family and they’ll be a key link with the rest of your child’s healthcare team. You might like to arrange a meeting with your child’s CNS when your child is first diagnosed.

Your child’s multidisciplinary team

When your child is diagnosed with AML, their condition is discussed at a multidisciplinary team (MDT) meeting. An MDT brings together doctors, nurses and any other specialist staff who’ll be looking after your child. A senior consultant usually leads these regular meetings. The team will discuss the best treatment for your child and every aspect of their care, including any changes in their condition.

Talking to other parents and patients

You might like to ask your child’s consultant or key worker if you can talk to other parents whose child has had the same diagnosis and treatment as yours. If you do, remember that someone else’s experience may differ from yours. For example, some children have side effects from a drug and others don’t.

You may also want to contact a support organisation – many provide meetings or further online support.

> Find out more about organisations that can help

Your child’s other healthcare professionals

You should tell other healthcare professionals your child sees – like their dentist or optician – about their diagnosis and any medication they’re taking.

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