Has anyone got care call similar to this
I have one mainly used for my Epilepsy, except rather than have the pendant I have the bracelet.
If you haven’t got one the principal on the way they work is if the disabled person is in the house on their own there are up to two people they can call and they are called Main & Second caller. My Main Caller is my wife and the second caller is my daughter.
Now I have had this system for quite some time now and what i’m about to tell you has never happend before.
On Tuesday night going into Wednesday morning I couldn’t sleep and it was about 2am when i was lying flat on my stomach with wrist that hand bracelet on.
All of a sudden I heard this voice and living in an area where there are lots of houses I thought it was the sound of police radios, next thing i hear is my wives mobie ringing.
Yep you guessed it! it was care call to say I had pressed buton on bracelet
Earlier than usual due to a seizure late Monday eve I bring you the video diary for that seizure.
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.  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:
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.
A number of infectious diseases can cause direct damage to brain tissue, such as viral encephalitis and meningitis, which can result in epilepsy.
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
- Difficulty talking
- Rigid, tense muscles
- The skin may look pale or flushed
- Racing heart
- Dilated pupils or staring
- Tongue biting
Keep in mind that not every child will experience all of these symptoms.
Physicians usually treat epilepsy with medication.  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.  Symptoms of epilepsy generally start for children with cerebral palsy during the first year of life, some within the first month after birth.
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.
Here is an example of how close in succession my seizures can occur
The following is a record of my latest Complex seizure
Safety and risks
There are many different things to help a person with epilepsy and a learning disability stay safe. These include ways to avoid injury inside and outside the home, seizure alarms and helmets.
People with epilepsy and a learning disability are more likely to die early than other people. So it’s especially important, for you as a carer, to know about sudden unexpected death in epilepsy (SUDEP).
Here is the NICE guideline that underlines that: 184.108.40.206 Healthcare professionals should be aware of the higher risks of mortality for children, young people and adults with learning disabilities and epilepsy and discuss these with them, their families and/or carers.
The most important thing to know about SUDEP is how to reduce risks. One of the biggest causes of SUDEP is night time convulsive seizures. If the person you care for has these types of seizure make sure the doctor knows. Reducing the number of night time seizures is one of the ways to reduce the risk of SUDEP. If the person you look after is still having night time seizures you might also consider getting some sort of bed alarm or listening device so you know when the seizures are happening.
Schools now have a legal responsibility to support children with medical conditions. This includes making sure that:
- Everyone is able to participate fully in the life of the school
- The staff understand epilepsy and are able to support students with the condition
- All students who need one, have an individual healthcare plan (IHP)
Epilepsy Action has information on the responsibilities of schools, an IHP template and information on support for children with special needs
Mencap, an organisation that supports people with learning disabilities, has a range of information on education.
The equality laws
The person you are caring for is protected under the equality laws. You are also protected because you’re caring for someone covered by the equality laws.
If the person you are looking after is being refused access to a place or a service, you will need to check if the organisation has done an individual risk assessment. If they haven’t, they need to do one. And then if they do identify any actual risks, they will need to consider what reasonable adjustment they may be able to put in place to make it possible for the person to access the service. They can only refuse access if they cannot identify any possible reasonable adjustments.
Epilepsy Action has more information on the equality laws.
As a full time carer it’s not always easy to find the time or the energy to look for the information and resources you may need. Your Community Learning Disability Team could be a good first local point of support for you. Your local council should be able to tell you how to get in touch with them.
Below is a list of topics on the NHS website. It’s a good source of information on social care. We are sorry there isn’t enough space to print it all out here. But if you don’t have access to the internet your local library may be able to help.
This information includes:
- Getting the right social care for adults
- Getting the right social care for children
- Help with challenging behaviour
- How to get adaptations and daily living aids in your home
- Finding respite care
- Finding the right accommodation
- Finding residential care
The NHS website is a good source of information on financial support for a carer of a person with a learning disability.
This information includes:
- Carers allowance
- Direct payments
- Personal health budgets
- Continuing care
What is a seizure dog?
A seizure dog is a dog that has been trained (or has learned) to respond to a seizure in someone who has epilepsy.
Is “seizure dog” the official name?
It is the name that is most often used. Some people distinguish between dogs that respond to someone who is having a seizure (seizure response dog) and dogs that appear to know when a seizure is going to occur (seizure predicting dog).
What do seizure dogs do?
- Some dogs have been trained to bark or otherwise alert families when a child has a seizure while playing outside or in another room.
- Some dogs learn to lie next to someone having a seizure to prevent injury.
- Some dogs learn to put their body between the seizing individual and the floor to break the fall at the start of a seizure.
- Some dogs are trained to activate some kind of pre-programmed device, such as a pedal that rings an alarm.
- Seizure dogs do not take the place of medical advice for night time supervision or other physician directed monitoring. There is no evidence that seizure dogs reduce the risk of SUDEP (sudden unexpected death in epilepsy).
Public interest in seizure assistance dogs has fueled demand for dogs with these skills.
How can someone get a seizure dog?
It depends what your goals are. If you are looking for a seizure response dog, you can discuss what you want the dog to do and work out a plan with a trainer.
However, getting a dog with the special skill of recognizing seizures in advance is another matter. Any claims by trainers that they can produce this type of behavior in a dog should be looked at very carefully, especially when the training is expensive. While some people report success, others have been disappointed.
More research is needed to better understand what dogs can and cannot do, whether there are differences between breeds, and how best to develop this unique skill.