Is your child suddenly losing limbs? Should we be aware of this AFM (Acute Flaccid Myelitis)?

Is your child suddenly losing limbs? Should we be aware of this AFM (Acute Flaccid Myelitis)?

Imagine, your naughty little one has been playing since morning, and by evening suddenly says, 'Mommy/Dad, I can't lift my arm', or while walking, his leg suddenly goes numb and drags him to the ground. Can you imagine what it feels like at that time? Today we are going to talk about a rare but very serious neurological condition that can suddenly and without any prior warning cause the limbs of our children, and sometimes adults, to become numb. This is called AFM (Acute Flaccid Myelitis) . This may be new to you when you hear this. So let's talk about it in detail.

What is this new disease, AFM (Acute Flaccid Myelitis)?

Simply put, AFM (Acute Flaccid Myelitis) is a rare but very serious neurological disease. What happens in this is that some of our muscles and reflexes suddenly weaken. To be precise, they become 'flaccid' , which means they become lifeless. These symptoms can appear suddenly, and sometimes it can even affect the ability to breathe. That's why it's so dangerous.

Did you know that our spinal cord is like the main communication center of our body? It has two parts, one is the 'gray matter' and the other is the 'white matter'. In this condition called AFM, the gray matter is mainly affected. This gray matter is where the nerve cells that control our muscle movements are located. So imagine what happens when something like inflammation, that is, swelling, occurs in such an important place? That's when the muscles don't get the right messages, and they suddenly become weak and lifeless. In fact, our central nervous system , that is, this gray matter in the brain and spinal cord, is the most essential part for us to function normally.

This diagnosis, AFM, is relatively new. Doctors and researchers first described it in 2014. Before that, people who showed symptoms like these were classified as having another neurological condition called ``Transverse Myelitis.''

Is AFM the same as the Guillain-Barré Syndrome (GBS) that many people are familiar with? Is it different?

Yes, this is an important question. Both AFM and Guillain-Barré Syndrome (GBS) are rare, muscle-weakening neurological diseases. But there are clear differences between the two.

In GBS , our own immune system, the system that protects us from disease, mistakenly attacks our own peripheral nerves . These peripheral nerves are the nerves that travel from our central nervous system to our limbs and other organs. This is called an autoimmune response . But in AFM, it directly affects the gray matter in the spinal cord.

Another difference is that in GBS, muscle weakness usually starts in the legs and then spreads to the upper body. In AFM, muscle weakness can start in either the arms or legs. Sometimes, it can affect just one arm or leg on one side.

Importantly, AFM usually affects young children , especially those between the ages of 1 and 7. GBS is most common in adults over the age of 40. So it's important to keep these differences in mind.

Who is most likely to develop AFM?

As I said before, about 90% of AFM patients are young children . It mainly affects children between the ages of one and seven. However, that doesn't mean that adults can't get it. Although very rare, adults can also get AFM. Therefore, it's good for everyone to be aware of the symptoms.

How common is this? What is the situation in Sri Lanka?

AFM is a very rare disease . For example, researchers in the United States estimate that less than one in a million people develop AFM each year. However, despite its rarity, there has been a slight increase in the number of AFM cases reported recently.

This disease is usually reported in clusters in certain geographical areas. Also, a certain seasonal pattern, especially a biennial pattern, has been observed. For example, such clusters of patients were reported in California in 2012 and in Colorado in 2014. If we talk about the situation in Sri Lanka, since this is very rare, there is still a lack of clear data about the reports in our country. However, if something like this increases somewhere in the world, it is important for us to be aware of it.

What are the symptoms of AFM? How is it diagnosed?

The symptoms of AFM usually appear suddenly . They can become severe within a few days, sometimes hours. The main symptoms are:

  • Sudden loss of sensation in the arms or legs: This is the most important and dangerous symptom. It may be one arm or leg, or both arms or both legs.
  • Loss of muscle tone: The muscles feel very loose to the touch.
  • Loss of reflexes / areflexia: Doctors tap the knee with a small hammer, and those reflexes disappear.
  • Loss of coordination and balance: You may feel unsteady when walking and may not be able to control your body properly.

These are the main symptoms that are seen. In addition to these, other symptoms may appear:

  • Difficulty moving the eyes or drooping eyelids.
  • Drooping of one side of the face or weakness of the facial muscles.
  • Difficulty swallowing (dysphagia).
  • Slurred speech.
  • Pain in the arms, legs, neck, or back.
  • Loss of control over urination and defecation.

AFM can affect any one of your arms, legs, or all four limbs. However, it most often affects the upper limbs , which are the hands.

Difficulty breathing - this is very dangerous!

Sometimes, AFM can also affect the muscles that are essential for our breathing . If this happens, it can lead to a very dangerous condition called respiratory failure . This is life-threatening, so immediate medical attention is necessary .

Symptoms of respiratory insufficiency are:

  • Rapid and shallow breathing.
  • Excessive fatigue and drowsiness.
  • Restlessness.

If you or your child develop any symptoms of AFM, seek medical attention immediately. Don't wait, as this can quickly become serious.

Why does this AFM occur? What is the cause?

Researchers still don't know exactly what causes AFM. However, they believe that viruses , especially non-polio enteroviruses, are involved. Many people who develop AFM have a mild respiratory illness, such as a common cold or flu, before developing symptoms.

Researchers and doctors have identified two types of viruses, specifically Enterovirus D68 and Enterovirus A71, in many AFM patients. Enterovirus D68 usually causes respiratory illnesses and is known to spread about every two years in the summer and fall in countries like the United States.

How to accurately diagnose AFM? (Diagnosis)

Diagnosing AFM can be challenging for doctors because it is a rare disease and its symptoms are similar to other neurological diseases such as Transverse Myelitis, Guillain-Barré Syndrome (GBS), and Polio .

Your doctor will ask you about your symptoms and medical history. They may then order or perform several tests to confirm AFM and rule out other conditions. These tests include:

  • Physical exam.
  • Neurological exam.
  • MRI (Magnetic Resonance Imaging) of the spine and brain: This is the most important test to confirm AFM. It can look for changes (such as inflammation) in the gray matter of the spinal cord.
  • Spinal tap/Lumbar Puncture: This involves taking a sample of cerebral spinal fluid (CSF) and checking it for signs of inflammation.
  • Nerve response tests: For example, `(Nerve conduction studies)`.
  • Muscle response tests: For example, Electromyography (EMG).

The doctor comes to a conclusion after conducting all these tests.

What are the treatments for AFM? Can it be cured?

Unfortunately, there is no cure for AFM yet . Therefore, the main goal of treatment is to manage symptoms and help you recover as much as possible. If possible, it is best to see a neurologist who has experience with and researches AFM.

Physical therapy and occupational therapy are important for limb weakness. These help strengthen muscles and improve movement. Neurologists usually recommend other treatments based on the individual patient's needs. For example, peripheral nerve surgery, which prevents muscle wasting, has been successful in some AFM patients.

Because AFM is a rare and relatively new diagnosis, scientists and doctors still have a lot to learn about the disease and its treatments. So research is ongoing.

Is there a way to prevent AFM from developing?

Since the exact cause of AFM is not known, there is still no specific way to prevent it .

However, since several viruses, including enteroviruses, are thought to be associated with AFM, we can reduce the risk to some extent by taking steps to protect ourselves from viral infections. These include:

  • Always wash your hands thoroughly with soap and water. Especially before and after eating, after using the bathroom, after touching an animal, and after caring for someone who is sick.
  • Avoid touching your face with unwashed hands.
  • Avoid close contact with people who are sick.
  • Get all recommended vaccinations on time.
  • Keep frequently touched surfaces (like tables, doorknobs) clean and use disinfectant.

Following these simple health habits will help protect you from many diseases.

What is the future if you develop AFM? (Prognosis)

Because AFM is a newly identified disease, researchers still don't know exactly what the long-term prognosis will be for those who contract the disease.

However, many patients gradually improve over time with continued treatment, such as physical therapy . Less than 10% of AFM patients make a full recovery. However, many people do show improvement, so it's not a good idea to give up hope.

What other complications can occur due to AFM?

As I mentioned earlier, AFM can affect the muscles needed for breathing. This can lead to respiratory failure , a condition that requires emergency medical treatment. People with respiratory failure may need machines (`ventilators`) to help them breathe. About a third of people with AFM require intubation and mechanical ventilation .

In addition, AFM can cause serious neurological complications, such as changes in body temperature, instability of blood pressure, and heart rate irregularities. These can also be life-threatening.

Therefore, it is essential to seek medical attention as soon as possible if you or your child experience these symptoms.

When should you see a doctor?

If you or your child suddenly develops muscle weakness in one arm, one leg, or several limbs , seek medical advice immediately . AFM is a disease that can progress quickly and lead to difficulty breathing. So it's important to act quickly, not to panic.

If you or your child is diagnosed with AFM, you will need to see your medical team regularly to receive treatment, such as physical therapy, and monitor your symptoms.

Finally, things to remember (Take-Home Message)

Okay, so I hope that from what we've discussed, you've gained some understanding of AFM (Acute Flaccid Myelitis). Remember, even though this is a rare disease, it's still very important to be aware of it.

  • Sudden muscle weakness is not something to be taken lightly, especially in young children. In such cases, see a doctor immediately.
  • Although there is no specific cure for AFM, there are treatments to manage symptoms and improve quality of life . Things like physical therapy are very important.
  • Researchers and doctors are still learning about AFM, so it's best to rely on your doctor's advice and follow their treatment recommendations .

Let us all take care of our children's and our own health. Being aware of rare diseases like these allows us to take quick action when needed.


` AFM, Acute Flaccid Myelitis, Muscle Weakness, Neurological Diseases, Children's Diseases, Spinal Cord, Viruses, Enteroviruses, Respiratory Distress, Paralysis

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