My Child Has an Autoimmune Disease – What Are the Do’s and Dont’s? by Dr. Sagar Bhattad

The exact reason or cause for autoimmune diseases is still unknown. A lot of research is going into finding the cause behind the various autoimmune diseases. These diseases can either be genetic or due to environmental exposure. Sometimes, an environmental factor can trigger the underlying autoimmune disease if the child has inherited a defective gene.

As a parent, it is important to remember that autoimmune diseases are not communicable, meaning you cannot get them because someone you stay with or someone in contact with you has a disease.

How Does the Immune System Work?

The immune system is the body’s defence mechanism against various infections caused by viruses, bacteria and other germs. When a virus or bacteria enters your body and causes an infection, the immune system recognises this antigen and produces antibodies to fight it.

The main component of the immune system is the white blood cells. These white blood cells, also known as the leukocyte, are made up of

1. Phagocytes

These are cells that surround a pathogen when it enters the body. They break down the pathogens and remove them from the body.

2. Lymphocytes

This is the immune system’s memory. The lymphocytes remember the previous foreign invaders and the antibodies produced to fight them. When the infection returns, the lymphocytes produce more of the respective antibodies to effectively fight the infection.

These two cells together attack and eliminate foreign invaders or viruses and bacteria that cause infections or diseases.

The immune system is on constant watch. When it identifies an invader, it starts its attack with antibodies.

Broadly, there are two components in the immune system.

a) Innate Immunity

Phagocytes which are the first line of defense against infections are responsible for providing innate immunity.

b) Adaptive Immunity

Lymphocytes form adaptive immunity, and they have memory. In other words, lymphocytes can remember previous infections and clear them rapidly during the next encounter.

Vaccines help build immunity against particular pathogens. The vaccines introduce small doses of the infection to help the immune system produce antibodies to fight it. Once the immune system is familiar with the infection, it can effectively fight it when it tries to affect the body.

What Happens When a Child Has an Autoimmune Disease?

When a child is diagnosed with an autoimmune disease, the best possible treatment is started immediately. Autoimmune diseases can cause severe damage to the organs in the body, so treating them or controlling them at the earliest is very important. Here is what will happen.

• The doctor will treat the underlying disease.
• If the disease has impacted some organ or other parts of the body, the doctor will put the patient on treatment to control the impact. This helps arrest the damage as early as possible.
• In case the child is responding well to the treatment and medicines, the doctor will continue the same way and slowly start decreasing the dosage.
• If the child is not responding well, the medicine will be changed. The doctor might prescribe another medicine or give a combination of medicines until they can find the right fit.
• In case of autoimmune diseases affecting the joints like Juvenile arthritis (JIA), the doctor will also put the patient on physical therapy to ensure the joints don’t get affected further. Regular exercises and check-ups help monitor the joints and ensure they are fluid and don’t become stiff.
• Medications will be continued as long as needed. This could be months or years. For some children, the dependency on medication might come down and they won’t require a regular dose. For some, they might have to be on daily medications forever.
• If there are new treatments, the doctor might try them after discussing the pros and cons with the parent.

With proper treatment and constant monitoring, the child can live a regular life with minimal restrictions.

[Read : Systemic Lupus Erythematosus(SLE) in Children]

What Types of Autoimmune Diseases Affect Children?

There are around 80 different types of autoimmune diseases known to scientists and doctors. These autoimmune diseases can be classified into organ-specific and non-organ specific.

1. Organ-Specific Autoimmune Diseases.

These autoimmune diseases specifically target one organ in the body. Some of the diseases that come under this category include

• Autoimmune Hepatitis that Affects liver
• Addison’s Disease that Affects adrenal glands
• Crohn’s Disease that Affects gastrointestinal tract
• Multiple Sclerosis(MS) that Affects the central nervous system
• Type 1 Diabetes that Affects pancreas
• Ulcerative Colitis that Affects gastrointestinal tract

2. Non-Organ Specific Autoimmune Diseases

These conditions do not target a specific organ but can cause issues throughout the body. Some of the diseases in this category include

• Scleroderma
• Lupus
• Juvenile Idiopathic Arthritis
• Juvenile Dermatomyositis

[Read : My Child is Diagnosed With Juvenile Dermatomyositis ]

Which Child is at Risk For Autoimmune Disease?

 

The autoimmune disease generally runs in families. There are cases where someone with absolutely no family history of the disease can be diagnosed with an autoimmune disease.

Here are some risk factors which can increase the chances of a child developing autoimmune diseases.

1. Genes

Every human receives two sets of genes. When one of the parents or their parents has an autoimmune disease, there are high chances for them to pass down this defective gene. While one might have a defective gene, it is not necessary for them to have the disease. It only increases their risk.

2. Weight

Your weight can sometimes play havoc with your system. It can add pressure to your joints, leading to chronic joint pains or arthritis, and can also cause some organs to malfunction.

3. Age

Autoimmune diseases are prone to affect younger people than older people. It can affect children too.

4. Race

Certain races and ethnicities are more prone to some autoimmune diseases than others. The reason is not very clear but it is connected to genetics.

5. Gender

Many autoimmune diseases affect girls more than boys

6. Medicines

 

Certain medications can trigger the underlying defective gene in the body. As a result, children can develop an autoimmune disease that has otherwise been dormant until the medicine interfered.

7. Other Diseases

An existing autoimmune disease increases the risk of developing another related autoimmune disease.

8. Environmental Exposures

People living near factories emitting harmful chemicals or consuming chemical-laden products are at a higher risk of developing autoimmune diseases. The immune system can lose its balance due to constant exposure to harmful chemicals.

Can Autoimmune Disease Be Prevented?

Sadly, no. An autoimmune disease is one where the cause is unknown. When you are not sure about the cause of a disease or when it can affect the child, you cannot prevent it effectively. It is not advisable to treat something that has not occurred yet.

Even in the case of genetic health issues where the chances of a child contracting an autoimmune disease are high, you cannot prevent it completely. Doctors might prescribe certain medicines or treatments for the mother-to-be, but this can only reduce the chances of the disease passing on to the child.

Do’s and Don’ts For Autoimmune Diseases

When your child is diagnosed with an autoimmune disease, you may be at a loss not knowing what to do and what you should not. Here are a few do’s and don’ts that can help you along. Always remember to follow your child’s lead. They will communicate how they are, what they can or can’t do and what they are not OK with. Just observing them can give you a clear list of do’s and don’ts with your child.

Do’s if a Child is Identified With Autoimmune Diseases

Here are some of the things you ought to do if your child has been diagnosed with an autoimmune disease:

1. Go For Regular Check-ups

Regular check-ups for your child help keep a close watch on the disease and its progress. Catching a flare-up or new symptoms in time can help treat them early. Constant monitoring will also reduce the impact the disease can have on various parts of the body.

2. Maintain Medical Records

Record every treatment, doctor’s visit and medicine prescribed for your child. You cannot expect the doctor to keep track of everything they have done for your child. In case you need to consult another doctor or a specialist, they will need records of everything to understand the disease and diagnose it correctly. Keeping a record of the medicines and the way your child reacted to them can be very useful. You can avoid medicines that have not worked well for your child.

3. Administer Medications

Administer the prescribed medications as per instructions. Ensure you follow the dosage recommendations, brands, and timings, exactly as prescribed.

4. Follow-Ups

In case of new treatments or revisiting the problem at a later date, you need to follow up with the medical care professionals. This will help you keep a close watch over the disease and can help treat it effectively. Missing a crucial medicine or appointment can have unfavourable outcomes.

5. Research

Do your research on the disease, the medicines, the treatments, etc. This does not mean you Google everything and ambush your doctor with questions. Follow research papers, talk to other parents, doctors, and learn more about the disease and the progress in treatment options. When your doctor discusses these with you, you will be in a better position to understand and take a call.

6. Join Communities/ Support Groups

There are many patients including kids suffering from autoimmune diseases. Joining a support group or a community with similar health issues will be reassuring, as you won’t feel alone. It can be emotionally very helpful for both you and your child. Both of you will be able to connect better with people who understand what you are going through.

7. Accompany Them

No matter how old they are or how used to the treatments they are, try to accompany them as frequently as possible. Though it is a “regular” procedure or therapy, they are going through a difficult phase, and they know they might have to live with this disease. Giving your child the moral support they need can do wonders for their mental health.

8. Empathise

It may be difficult in all ways – emotionally, physically and even financially, to support a child with an autoimmune disease. However, it is important that you empathise with them and hear them out when they want to talk about their illness and fears. When they feel heard, they don’t feel alone.

9. Encourage

Encourage your child to take up activities. It may be physically limiting or difficult but if your child wants to do it, encourage them. They might come up with a way or learn to cope with the demands. Give them the confidence that they can live a regular life like other children their age.

10. Give Options

If you notice your child is not liking or is unable to do something children their age do, give them options. If your child has severe juvenile arthritis and is unable to play physical sports, give them a choice between a board game and a physical game probably. Let them know they have a choice, and they have control over it. This leaves the door open for them to attempt something, but they also know they can wait and try later.

Don’ts if a Child is Identified With Autoimmune Diseases

While it can be very tempting to do some of these at some point or the other, please refrain from doing these:

1. Self-Medicate

The disease is persistent and not permanently curable. So, you are aware of the medicines the doctor might prescribe. However, unless the doctor has instructed you to administer certain medications without consultation, or on a regular basis, never self-medicate your child. You might end up overdosing on them as you may not be aware of the other medicines or combinations the doctor has given your child.

2. Miss Appointments

Be it a follow-up, a regular check-up or scans, if you are unable to make it, always reschedule. Do not skip it. Autoimmune diseases need constant medical monitoring to check for flare-ups or changes. Missing these red flags can be dangerous for your child.

3. Ridicule The Child

If your child is unable to perform physical activities or any activities for that matter like other children their age, do not compare and ridicule them. Yes, you may think this reverse psychology might work on the child and push them to try harder, but you might end up breaking them emotionally instead. Observe your child and understand their limits. Do not push them beyond that, it might depress them.

4. Ignore Complaints

If your child complains of pain or discomfort, do not ignore them. Though they might be the usual, always ensure you check it out. It might be a flare-up causing sudden discomfort or pain or it could be just an emotional need. Your child might need emotional reinforcements which can make them a little needy at times. Yes, it is definitely difficult but understand what your child is going through.

How to Prevent Autoimmune Diseases?

It is not possible to prevent an autoimmune disease unless the embryo is altered. This is an advanced technology that is still in its infancy stages. It is not medically practised and doctors are still experimenting. As we do not know and understand why a few people develop autoimmune diseases, it is impossible to suggest means of prevention.

Treatment Options For Autoimmune Disease in Children

If your child has been diagnosed with an autoimmune disease, here are the various treatment options. You may not have the liberty to choose all the time. certain diseases need to be handled in a certain manner. These are just possible treatment options.

1. Anti-inflammatory drugs
2. Corticosteroids
3. Pain Killers
4. Immunosuppressants
5. Physical Therapy
6. Surgery
7. Treatment to manage the deficiency

[Read : Steroids in Children]

When to Seek a Doctor’s Help?

If you notice your child has been falling sick very often or the regular medicines are not curing the condition, it is a warning that something is wrong. It is always advisable to get your child checked by your doctor or a qualified medical professional, to rule out various diseases. Early diagnosis can help treat the problem better.

Here are a few signs that you need to consult a doctor immediately.

• Chronic pain in joints that won’t go away
• Swollen and stiff joints
• Rashes over the body that are frequent
• Weight loss
• Frequent or continuous fevers for many weeks
• Child falls sick too often
• Breathing difficulty
• Frequent oral ulcers
• Inner organs being affected – e.g.: kidneys (often have problems like high blood pressure, passing blood in urine)

An autoimmune disease can be very difficult to live with, especially for children. However, with the right diagnosis and timely treatment, you can work on reducing the impact of the disease and help the child lead a close to normal life. The advancement of science and technology has enabled children with autoimmune diseases to enjoy their childhood, without much of a compromise.

Read Also: What Is Intravenous Immunoglobulin? How Does It Work in Children With Low Immunity? by Dr. Sagar Bhattad