Firstly I am not a medical doctor. The following is for informational purposes only. It may serve as a starting point if you or your child has recently been diagnosed. It should not replace any professional advice you have received.

The reason I include such blogs is because of my own experiences regarding diagnosis in the past. I received a diagnosis about one of my children but no one told me what it meant or where to seek help. I felt like I was drowning and I don’t want anyone else to every experience that again.

What Is Epilepsy?

In Ireland about 40,000 people are affected by epilepsy. Epilepsy is neurological condition that causes seizures. It affects both males and females of all ages. Although it is more likely to start in childhood or in the elderly. Epilepsy can also cause periods where the person may exhibit unusual behaviour, a loss of awareness and sensations.

If you have a seizure it doesn’t mean you will have epilepsy. But you should always seek professional advice as seizure symptoms can vary widely. Seizures can affect how your brain coordinates. For some the seizure may appear as if the person is staring blankly while others have arm or leg twitching.

What Are The Symptoms Of Epilepsy?

Seizures are generally classified by specialists into different types. These types are: unknown onset seizure, focal seizure or generalized seizure. Unknown onset seizures are where the beginning of a seizure is unknown. As these progress and more becomes known about the person’s seizures they may be reclassified into focal or generalized.

Focal seizures are caused by abnormal activity in one part of the brain. They may be categorized into two categories: focal seizures without loss of consciousness and focal seizures with impaired awareness.

Generalized seizures seems to involve all areas of the brain and are categorized into six types: Absence seizures; Tonic seizures; Atonic seizures; Clonic seizures;  Myoclonic seizures; Tonic-clonic seizures.

For more information on each of the above categories please check out the support links below.

Symptoms can vary depending on type but most people will have a similar type of seizure each time. Seizure signs and symptoms may include:

• Temporary confusion
• Blank staring spell
• Stiff muscles
• Uncontrollable jerking movements of the arms and legs
• Loss of consciousness or awareness
• Psychological symptoms such as fear, anxiety or deja vu

The Causes Of Epilepsy.

For about half of those affected by epilepsy the exact cause is unknown. For others a number of factors may have caused their epilepsy. These factors may include:

• Genetic influence.
• Head trauma, dementia, strokes and other vascular diseases.
• Brain abnormalities.
• Infections.
• Prenatal injury.
• Developmental disorders.

What Can Trigger An Epileptic Seizure?

There are a variety of things that may trigger an epileptic seizure for someone. These have been reported to include: stress, a lack of sleep, fever, flashing lights, low blood sugar, caffeine, alcohol, drugs, nicotine and missed medication.

How Is Epilepsy Diagnosed?

It is important to reach out to your GP or main doctor if you think you have had a seizure. Not everyone will be brought to accident and emergency with their first seizure. Your doctor will refer you for diagnosis to a neurologist. The neurologist will run a number of tests to find out if you have epilepsy. These tests can include an EEG, brain scan, blood tests, etc.

The neurologist will need to know as much detail about your seizure as possible. So try to write down as much as you can remember such as:

1. When you had the seizure.
2. What were you doing and how you felt before, during and afterwards.

It can also be helpful if you bring someone with you to support you and take notes.

It is important that while you wait for your appointment that you reach out to your GP again if you have another seizure. Plus avoid activities that could put you or others in danger i.e. driving, swimming, etc.

How Is Epilepsy Treated?

A treatment plan will be drawn up once you are diagnosed. Your specialist will be able to discuss the best treatment options open to you. Treatment is generally aimed at reducing the number of seizures or stopping them.

While some people may require treatment for life others may find that once their seizures stop treatment will cease. But never stop treatment without consulting your doctor or specialist first.

Options for treatment can include:

• Medications called anti-epileptic drugs.
• Surgery.
• A procedure to put a small electrical device inside the body that can help control seizures.
• A ketogenic diet that can help control seizures.
• If triggers are known then avoiding them will also help.

Self-Help

1. Understand your type or child’s type of epilepsy. Make sure you know which type of epilepsy you have and any triggers you may have also.
2. Join a support group or national organization. These are vital supports and a wealth of information to help you. They will help you get to know your rights and entitlements or your child’s rights and entitlements. Please see supports section for links below.
3. Make sure to reach out for help to your GP and specialist team. You should be involved in planning your treatment.
4. Reduce your stress by making time for relaxation, and self-care. This is vital for your condition.
5. Stick to a regular routine when it comes to meals, sleep, etc., again this will help reduce your stress, keep blood sugar regular and help your overall physical and mental health.
6. Focus on the present only as this is so important for reducing everyone’s stress.
7. Get counselling for yourself to help you adjust and cope.

For parents

1. You will need to be your child’s advocate. Unfortunately it is up to us as parents to help educate teachers and others about Epilepsy. Make sure you understand the condition yourself first and what to do if your child has a seizure. Ask your school to run an awareness program and training for all staff regarding: Being seizure aware. You can find more information on this through the support link (Ireland) below.
2. It is important you help nurture your child’s self-esteem. Self-esteem can suffer in children and teens with epilepsy. Support your child’s personal interests and friendships as both can help build self-esteem. Your child may be embarrassed by their condition especially if it happens in public. This may cause them to withdrawn socially. They may also be at a higher risk of developing depression and anxiety also. Helping them manage their self-esteem can reduce this risk.

I have a variety of blogs and videos to help parents of special needs children. You might be interested in the following ones specifically: Dealing with guilt as a special needs parent, Choosing a school for a disabled child, Accessing services in third level with a disability and information on other disabilities.

You as a parent also need support for yourself including your mental health. Coming to terms with any diagnosis can be hard. I would strongly advise you to make sure you create a positive support system around you.

One part of that positive support system is working a therapist. A strong positive support system will provide you with tangible, informational, emotional and social support. As a parent of a special needs child that is invaluable and vital. Believe me I know how vital the right support can be at this time.

Supports

For more information on epilepsy in Ireland including seizure safety, lifestyle, driving, entitlements, children, etc go to: https://www.epilepsy.ie/

For more information on support in the UK: https://www.nhs.uk/conditions/epilepsy/living-with/

Work With Me.

Remember you are allowed to ask for support. No one is an island. If you need extra support then you can also work with me. We all struggle with stress and overwhelm from time to time. If you find this has become a problem for you and you’d like some support then schedule an appointment with me.