Seizure update 10th Sept

At the moment I am unable to bring you a video or audio about my latest seizure which occurred this morning.

The seizure which was a Focal or otherwise known as a Complex seizure happened at approximately 10.30am and lasted approximately three – five minutes. After this there was a sense of confusion lasting a few minutes.

Every time I put a post like this up, I get a few comments basically saying get well soon. I am grateful that people do that.

Most of the time after a seizure I usually after a short time return to normal.

Living with hidden disabilities

In the UK alone, 1 in 5 people has a disability, with 80% of those having an invisible disability.

What is an invisible disability?

A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).

Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities, are disabilities that are not immediately apparent. Typically, they are chronic illnesses and conditions that significantly impair normal activities of daily living.

Living with these conditions can make daily life more demanding for many people. They affect each person in different ways and can be painful, exhausting, and isolating. Without visible evidence of the hidden disability, it is frequently difficult for others to acknowledge the challenges faced and as a consequence, sympathy and understanding can often be in short supply.

Examples of Hidden Disabilities
While this list is by no means exhaustive, some examples of hidden disabilities include:

  • Autism
  • Brain injuries
  • Crohn’s Disease
  • Chronic pain
  • Cystic Fibrosis
  • Depression, ADHD, Bipolar Disorder, Schizophrenia, and other mental health conditions
  • Diabetes
  • Epilepsy
  • Learning difficulties, including dyslexia, dyspraxia, dysgraphia, and language processing disorder
  • Lupus
  • Rheumatoid Arthritis
  • Visual and auditory disabilities. These could be considered visible if the person with the disability didn’t wear support aids such as glasses or hearing aids

During the COVID-19 pandemic, invisible disabilities have become a talking point, which is why it is important to raise awareness of them.

Epilepsy

Epilepsy is a common condition where sudden bursts of electrical activity in the brain cause seizures or fits. There are lots of possible symptoms of epileptic seizures, including uncontrollable shaking or losing awareness of things around you. The main treatment for epilepsy is medicine to help prevent seizures. It’s often not clear what causes epilepsy. Sometimes it runs in families or is caused by damage to the brain from trauma such as a severe head injury.

Useful Resources

Epilepsy bed sensor

Footprint GPS Alarm

Seizures and me: Charlotte’s story

Epilepsy Action – Free online course What to do when someone has a seizure

Epilepsy first aid poster

How we can help

Assistive technology can promote a sense of independence for those living with epilepsy, whilst providing peace of mind and reassurance for loved ones and carers.

Epilepsy sensors are used to monitor people with epilepsy while they are asleep in bed. Patented sensor technology detects a person’s movement in bed and is able to differentiate normal movements from epileptic seizures enabling tonic clonic seizures to be detected the moment they occur. They help carers respond quickly when needed, and avoid disturbing a person’s sleep when they are not. The sensitivity of the sensor can be adjusted to best suit the person’s requirements.

This sensor is suitable for use with children as well as adults.

Outside the home                                   

Our GPS falls detector recognises when a person falls and connects straight through to our alarm response centre – ensuring help is on its way when you need it most. The alarm can be set up to alert an emergency contact or we can request an ambulance right away – the plan can be tailored to your individual needs.

This is a great solution for teenagers or adults with epilepsy. In many cases a parent or carer for someone with epilepsy will undertake regular checks or need to be on hand 24/7. This means constant worry for the care giver and a loss of independence for the individual. Our Footprint device will automatically raise an alert if it detects a fall, (no need to press a button) as well as being able to locate where you are. This enables appropriate care to be provided quickly, without the need for manual checks. 

A Helping Hand

Our products and plans are tailor made to help you or your loved ones stay safe. Explore the range below and see how Progress Lifeline can assist those with Epilepsy.

Epilepsy bed sensor

These are used to detect seizures whilst in bed. They are able to detect movements that are associated with a tonic clonic type seizure.

Footprint GPS Alarm & Falls Detector

The Footprint is a GPS location device, pendant alarm & falls detector all-in-one.

Falls Detector

The Falls Detector can be worn as a pendant or as a watch. When a fall is detected, the device automatically connects the wearer to our alarm response centre – no need to even press the button.

Key Safe

A KeySafe can be installed externally to allow safe and secure emergency access to your home. (A code is used by contacts that you approve to help in an emergency).

Emergency Home Response

Add our Emergency Home Response service to any alarm package for just £11 per month. Our responders provide 24/7 assistance to you at home if your family and named contacts can’t get there.

  

What Is a CT Scan?

Photo by MART PRODUCTION on Pexels.com

A computerized tomography scan (CT or CAT scan) uses computers and rotating X-ray machines to create cross-sectional images of the body. These images provide more detailed information than normal X-ray images. They can show the soft tissues, blood vessels, and bones in various parts of the body. A CT scan may be used to visualize the:

  • head
  • shoulders
  • spine
  • heart
  • abdomen
  • knee
  • chest

During a CT scan, you lie in a tunnel-like machine while the inside of the machine rotates and takes a series of X-rays from different angles. These pictures are then sent to a computer, where they’re combined to create images of slices, or cross-sections, of the body. They may also be combined to produce a 3-D image of a particular area of the body.

Why Is a CT Scan Performed?

A CT scan has many uses, but it’s particularly well-suited for diagnosing diseases and evaluating injuries. The imaging technique can help your doctor:

  • diagnose infections, muscle disorders, and bone fractures
  • pinpoint the location of masses and tumors (including cancer)
  • study the blood vessels and other internal structures
  • assess the extent of internal injuries and internal bleeding
  • guide procedures, such as surgeries and biopsies
  • monitor the effectiveness of treatments for certain medical conditions, including cancer and heart disease

The test is minimally invasive and can be conducted quickly.

How Is a CT Scan Performed?

Your doctor may give you a special dye called a contrast materialto help internal structures show up more clearly on the X-ray images. The contrast material blocks X-rays and appears white on the images, allowing it to highlight the intestines, blood vessels, or other structures in the area being examined. Depending on the part of your body that’s being inspected, you may need to drink a liquid containing the contrast. Alternatively, the contrast may need to be injected into your arm or administered through your rectum via an enema. If your doctor plans on using a contrast material, they may ask you to fast for four to six hours before your CT scan.

When it comes time to have the CT scan, you’ll be asked to change into a hospital gown and to remove any metal objects. Metal can interfere with the CT scan results. These items include jewelry, glasses, and dentures. Your doctor will then ask you to lie face up on a table that slides into the CT scanner. They’ll leave the exam room and go into the control room where they can see you and hear you. You’ll be able to communicate with them via an intercom.

While the table slowly moves you into the scanner, the X-ray machine will rotate around you. Each rotation produces numerous images of thin slices of your body. You may hear clicking, buzzing, and whirring noises during the scan. The table will move a few millimeters at a time until the exam is finished. The entire procedure may take anywhere from 20 minutes to one hour.

It’s very important to lie still while CT images are being taken because movement can result in blurry pictures. Your doctor may ask you to hold your breath for a short period during the test to prevent your chest from moving up and down. If a young child needs a CT scan, the doctor may recommend a sedative to keep the child from moving.

Once the CT scan is over, the images are sent to a radiologist for examination. A radiologist is a doctor who specializes in diagnosing and treating conditions using imaging techniques, such as CT scans and X-rays. Your doctor will follow-up with you to explain the results.

What Are the Risks Associated with a CT Scan?

There are very few risks associated with a CT scan. Though CT scans expose you to more radiation than typical X-rays, the risk of cancer caused by radiation is very small if you only have one scan. Your risk for cancer may increase over time if you have multiple X-rays or CT scans. The risk of cancer is increased in children receiving CT scans, especially to the chest and abdomen.

Some people have an allergic reaction to the contrast material. Most contrast material contains iodine, so if you’ve had an adverse reaction to iodine in the past, make sure to notify your doctor. Your doctor may give you allergy medication or steroids to counteract any potential side effects if you’re allergic to iodine but must be given contrast.

It’s also important to tell your doctor if you’re pregnant. Though the radiation from a CT scan is unlikely to harm your baby, your doctor may recommend another exam, such as an ultrasound or MRI scan, to minimize risk.

What Do CT Scan Results Mean?

CT scan results are considered normal if the radiologist didn’t see any tumors, blood clots, fractures, or other abnormalities in the images. If any abnormalities are detected during the CT scan, you may need further tests or treatments, depending on the type of abnormality found.

Are Cerebral Palsy & Epilepsy connected

Around half of all children with cerebral palsy also have epilepsy. Both cerebral palsy and epilepsy are neurological disorders that often coexist with one another.

What is Epilepsy?

According to the National Institute of Neurological Disorders, epilepsy encompasses a “spectrum of brain disorders,” in which the pattern of normal neuronal activity is disrupted. [1] When the activity of brain cells, or neurons, is disturbed, convulsions (known as seizures) and muscle spasms result.

During these episodes, some children will experience loss of consciousness. As the fourth most common neurological disorder in the world, epilepsy can affect anyone at any age. Around 1 out of every 100,000 people develop epilepsy each year.

There are a number of different types of seizures, and people with epilepsy may experience one or several of the various types. It’s important to note that there is a difference between epilepsy and seizures. Someone who has only one seizure generally does not have epilepsy.

Epilepsy is marked by recurrent seizures. If someone has at least two but usually more seizures as an ongoing condition, they are more likely to be diagnosed with a seizure disorder, otherwise known as epilepsy.

What Causes Epilepsy?

For about half of epilepsy cases, there’s no known cause. Among the known causes of epilepsy, the most common include:

Prenatal Injuries

During intrauterine life, the developing brain of a fetus is highly susceptible to damage. This can occur from prenatal infections, maternal alcohol and drug use, when the oxygen or blood supply is low, and with poor nutrition or vitamin deficiencies.

Developmental and Genetic Disorders 

As mentioned earlier, cerebral palsy and epilepsy often coexist. Other neurodevelopmental and genetic disorders that can be associated with epilepsy include conditions like autism, neurofibromatosis, Angelman syndrome, and many others.

Sometimes a mutation in one or more genes can cause abnormalities in the brain that can be passed down and make a whole family more susceptible to epilepsy or other brain disorders.

Head Trauma

Head trauma, such as birth injuries, motor vehicle collisions, or any accident in which the head undergoes traumatic damage can lead to epilepsy. [2]

Diseases

A number of infectious diseases can cause direct damage to brain tissue, such as viral encephalitis and meningitis, which can result in epilepsy.

Oxygen Loss 

Any significant lack of oxygen to the brain before, during, or after birth, can cause seizures in babies. This can also occur with people of any age with a stroke, which is a bleed or obstruction to the blood flow in the brain. The brain damage that occurs is very often permanent and may leave the child with a seizure disorder.

What are the Symptoms of Epilepsy?

The main symptom of epilepsy is recurrent seizures, which are marked by any of the following:

  • Uncontrollable, jerking body movements, usually in the arms and legs
  • Repetitive movements of the face, including lip-smacking or chewing
  • Loss of awareness
  • Drooling
  • Difficulty talking
  • Rigid, tense muscles
  • The skin may look pale or flushed
  • Racing heart
  • Dilated pupils or staring
  • Sweating
  • Tongue biting
  • Tremors

Keep in mind that not every child will experience all of these symptoms.

Epilepsy Treatment

Physicians usually treat epilepsy with medication. [3] The type of medicine prescribed is based on the particular seizure type experienced by the child. However, since each child is different, finding the correct medication, along with the right dosage, can be an arduous process.

Doctors usually prescribe the first medication at a low dosage to see how effective it is, and how many side effects the child will experience. Most epilepsy medications have significant side effects, especially when they are first started, which can include dizziness, weight gain, fatigue, nausea, skin rashes, and more, depending on which medication is prescribed.

Over half of the people who begin medication find success with this method of treatment, and with continued use, may even eventually become seizure-free. There are some for whom the medication works well to control the seizures, but they will have to continue on medicine for life in order to remain seizure-free.

If medications fail to work, physicians may recommend a treatment called vagus nerve stimulation. This involves the placement of a small device into the patient’s chest. This device sends low levels of electrical energy to stimulate the vagus nerve, which may reduce seizure activity between 20% and 40%.

The ketogenic diet is another treatment option for epilepsy that fails to respond to medication. It’s a strict diet, however, that entails substantially lowering carbohydrates while increasing fats. The body will then use fat for energy, as opposed to carbohydrates.

It is a difficult diet for families to follow because of the severe limitations in what the child may eat, as well as the continuous need to monitor for ketones.

You’ll need to work closely with your physician, as well as a dietitian or nutritional counselor, if you decide to have your child try the ketogenic diet, as some children may experience adverse side effects, including dehydration and nutritional deficiencies.

However, with proper medical supervision, the side effects are not too common. Around 10% to 15% of children who go on the ketogenic diet are seizure-free within a year, although it is very rare for people to be able to stay on this diet successfully for long periods of time.

If all other treatments have been exhausted, surgery may be considered as the next option. Surgical procedures are generally only performed as a last resort, and when doctors determine that the seizures occur in a specific part of the brain that doesn’t hinder vision, speech, hearing, or motor function. During the operation, the part of the brain that’s causing seizures is removed.

Studies on Cerebral Palsy and Epilepsy

According to a scientific study published in the European Journal of Epilepsy, spastic quadriplegia and spastic diplegia are the most common types of cerebral palsy associated with epilepsy. [4] Symptoms of epilepsy generally start for children with cerebral palsy during the first year of life, some within the first month after birth.

Epilepsy Prognosis

If children respond well to medication, there’s a good chance that they’ll be seizure-free one day, and may even be able to discontinue epilepsy medication use. It is important to note, however, that many children with cerebral palsy will need to remain on medication to control their seizures for life.

The University of Maryland Medical Center (UMM) states that long-term survival rates are lowered when traditional treatment options, such as medications and surgery, fail to work. Accidents from uncontrollable seizures also play into the lower survival rate.

These are cases in which the severity of the seizure disorder is part of an overall more severe form of cerebral palsy, and many other organ systems are affected, leading to a shortened life span.

Epilepsy in childhood

Information about the diagnosis and treatment of childhood epilepsy and how epilepsy may affect a child’s life.

In the UK, epilepsy affects around 60,000 children and young people under 18. Epilepsy can start at any age including childhood. Epilepsy can start at any age, including in childhood. If your child develops epilepsy you may have questions or concerns.

What is epilepsy?

Epilepsy is a neurological condition (affecting the brain and nervous system) where a person has a tendency to have seizures that start in the brain.

The brain is made up of millions of nerve cells that use electrical signals to control the body’s functions, senses and thoughts. If the signals are disrupted, the person may have an epileptic seizure.

Not all seizures are epileptic. Other conditions that can look like epilepsy include fainting (syncope) due to a drop in blood pressure, and febrile convulsions due to a sudden rise in body temperature when a young child is ill. These are not epileptic seizures because they are not caused by disrupted brain activity.

See more about what is epilepsy?

What happens during a seizure?

There are many different types of epileptic seizure. The type of epileptic seizure a child has depends on which area of their brain is affected.

There are two main types of seizure: focal seizures (previously called partial seizures) and generalised seizures. Focal seizures affect only one side of the brain and generalised seizures affect both sides of the brain. Generally, adults and children have the same types of seizure. However, some may be more common in childhood than adulthood (for example, absence seizures which can be very brief and are often mistaken for ‘daydreaming’ or not paying attention).

Different seizures include:

  • jerking of the body 
  • repetitive movements
  • unusual sensations such as a strange taste in the mouth or a strange smell, or a rising feeling in the stomach.

In some types of seizure, a child may be aware of what is happening. In other types, a child will be unconscious and have no memory of the seizure afterwards.

Some children may have seizures when they are sleeping (sometimes called ‘asleep’ or ‘nocturnal’ seizures). Seizures during sleep can affect sleep patterns and may leave a child feeling tired and confused the next day.

See more about seizures.

Why does my child have epilepsy?

Some children develop epilepsy as a result of their brain being injured in some way. This could be due to a severe head injury, difficulties at birth, or an infection which affects the brain such as meningitis. Epilepsy with a known structural cause like this is sometimes called symptomatic epilepsy.

Some researchers now believe that the chance of developing epilepsy is probably always genetic to some extent, in that anyone who starts having seizures has always had some level of genetic tendency to do so. This level can range from high to low and anywhere in between. 

Even if seizures start after a brain injury or other structural change, this may be due to both the structural change and the person’s genetic tendency to have seizures combined. This makes sense if we consider that many people might have a similar brain injury but not all of them develop epilepsy afterwards.

See more about causes of epilepsy.

How is epilepsy diagnosed?

A diagnosis of epilepsy may be considered if your child has had more than one seizure. The GP will usually refer them to a paediatrician (a doctor who specialises in treating children). You (and your child if they can) may be asked to describe in detail what happened before, during and after the seizure.

Having a video recording of the seizure can help the paediatrician understand what is happening.

The paediatrician may also suggest a few tests to help with the diagnosis. The tests alone cannot confirm or rule out epilepsy, but they can give extra information to help find out why your child is having seizures.

See more about how epilepsy is diagnosed.

What is a childhood epilepsy syndrome?

If your child is diagnosed with a childhood epilepsy syndrome, this means their epilepsy has specific characteristics. These can include the type of seizure or seizures they have, the age when the seizures started and the specific results of an electroencephalogram (EEG).

An EEG test is painless, and it records the electrical activity of the brain.

Syndromes follow a particular pattern, which means that the paediatrician may be able to predict how your child’s condition will progress. Syndromes can vary greatly. Some are called ‘benign’ which means they usually have a good outcome and usually go away once the child reaches a certain age. Other syndromes are severe and difficult to treat. Some may include other disabilities and may affect a child’s development.

Treatment for children

Your child’s GP is normally responsible for their general medical care. The GP may refer your child to a paediatrician or paediatric neurologist (a children’s doctor who specialises in the brain and nervous system). An epilepsy specialist nurse may also be involved in their care.

Young people usually start to see a specialist in adult services (a neurologist) from around 16 years old.

Anti-epileptic drugs

Most people with epilepsy take anti-epileptic drugs (AEDs) to control their seizures. The paediatrician can discuss with you whether AEDs are the best option for your child. Although AEDs aim to stop seizures from happening, they do not stop seizures while they are happening, and they do not cure epilepsy.

Most children stop having seizures once they are on an AED that suits them. Like all drugs, AEDs can cause side effects for some children. Some side effects go away as the body gets used to the medication, or if the dose is adjusted. If you are concerned about your child taking AEDs you can talk to their paediatrician, epilepsy nurse, GP or pharmacist. Changing or stopping your child’s medication without first talking to the doctor can cause seizures to start again or make seizures worse.

Although AEDs work well for many children, this doesn’t happen for every child. If AEDs don’t help your child, their doctor may consider other ways to treat their epilepsy.

Ketogenic diet

For some children who still have seizures even though they have tried AEDs, the ketogenic diet may help to reduce the number or severity of their seizures. The diet is a medical treatment, often started alongside AEDs and is supervised by trained medical specialists and dietitians. 

Epilepsy surgery

It may be possible for some children to have epilepsy surgery depending on the type of epilepsy they have and where in the brain their seizures start. Epilepsy surgery involves removing a part of the brain to stop or reduce the number of seizures a child has.

Will epilepsy affect my child’s life?

You may not be able to predict how epilepsy will affect your child’s life. However helping your child to manage their seizures and be open about their feelings can make a positive difference. Help your child’s school understand their condition to ensure they get the most out of their school and education.

Triggers for seizures

Some children’s seizures happen in response to triggers such as stress, excitement, boredom, missed medication, or lack of sleep. Keeping a diary of their seizures can help to see if there are any patterns to when seizures happen. If you recognise triggers, avoiding them as far as possible may help to reduce the number of seizures your child has.

Getting enough sleep, and well-balanced meals, will help keep your child healthy and may help to reduce their seizures.

See more about triggers

Immunisation (vaccination)

Some parents are nervous about immunisation, whether or not their child has epilepsy. The Department of Health recommends that every child is immunised against infectious diseases. This includes children who have epilepsy. If you are concerned about immunisations, your child’s GP or paediatrician can give you more information.

Behaviour

For some children, having epilepsy and taking AEDs will not affect their behaviour. However, some people may notice a change in their child’s mood or behaviour such as becoming irritable or withdrawn. Some children may be responding to how they feel about having epilepsy and how it affects them. They may also want to be treated the same as their siblings or friends and to feel that epilepsy isn’t holding them back. Encouraging your child to talk about their epilepsy may help them feel better.

Behaviour changes and problems can happen for all children regardless of having epilepsy and for many, may just be part of growing up. In a few children, irritable or hyperactive behaviour may be a side effect of AEDs. If you have concerns about changes in your child’s behaviour, you may want to talk to their doctor or epilepsy specialist nurse. 

Leisure activities

Most children with epilepsy can take part in the same activities as other children. Simple measures can help make activities such as swimming and cycling safer. For example, making sure there is someone with your child who knows how to help if a seizure happens.

See more about leisure and safety.

Can epilepsy change as children get older?

Seizures may change over time, either in type or frequency. Some children outgrow their epilepsy by their mid to late teens. This is called ‘spontaneous remission’. If they are taking AEDs and have been seizure-free for over two years, their doctor may suggest slowly stopping medication.

How might my child feel?

Having epilepsy can affect a child in different ways. Depending on their age and the type of seizures your child has, the impact may vary.

For some children having a diagnosis of epilepsy will not affect their day-to-day lives. For others it may be frightening or difficult to understand. They may feel embarrassed, isolated or different in front of their peers. Encouraging your child to talk about their concerns may help them to feel more positive.

Most children with epilepsy will have the same hopes and dreams as other children and seizures may not necessarily prevent them from reaching their goals.

See also Epilepsy in adolescence.

Your feelings as a parent

If your child is diagnosed with epilepsy you may have mixed emotions – for your child and for yourself. It can take time to come to terms with a diagnosis and how it may affect family life. You may feel worried or relieved. How you feel about the diagnosis may also change over time.