Epilepsy for Mummys (and Daddys) (My Experience of Epilepsy)

Member Name: sandemp

Product:	My Experience of Epilepsy
Date:	06/01/05 (47 review reads)
Rating:

Advantages: None

Disadvantages: The heartbreak of watching your child fit, The medication, The list goes on

I would just like to point out that this review is based on my personnal experience. And holds the sort of information I would have liked to be told by the doctors, not the actual medical jargon they came out with.
Thank you


My six year old son Michael has epilepsy. I remember his first big seizure vividly, he was four months old and laying under his baby gym, when he let out an almighty scream and went totally stiff this lasted a few minutes and then he went to sleep. Now as my husband also has epilepsy I was very calm during this, maybe too calm, I'd seen it all before and already suspected that my baby was having absences (another type of seizure). So I phoned the doctors surgery and asked for a doctor to come and visit. Then all hell broke loose, I was advised to call an ambulance and take him straight to A & E. He was admited for observation and after having many absences was put on his first medication and diagnosed as having epilepsy.

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So What is Epilepsy?
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If you think of your brain like a huge electrical circuit, epilepsy is like a lot of short circuits firing off in the brain.

In the UK 1 in 133 people has epilepsy, so there's sure to be at least one of your aquaintences that has epilepsy even if you don't realise it. Epilepsy is the second most common neurological condition after migraine. The majority of people with epilepsy find that their seizures are controlled by the first drug they are put on, however for others control is never fully established, unfortunately my son fits into the latter group.

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How is it Diagnosed?
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Although there are tests that can be performed my son's epilepsy diagnosis was based on clinical observation, in otherwords the doctors and nurses saw him seizing.

The tests that he also had are :

EEG (ElectoEncephaloGram) - Wires were attached to his head and conected to a computer that read his brainwaves. He had a couple of different types, one was sleep deprived when I had to keep him awake from about 4am. The other lasted for 48 hours. Although neither caught any seizures we did learn that there was something wrong with both halfs of his brain.

CT (Computer Tomography) scan - For this he was sedated, and a very large and noisy machine took pictures of slices of his brain. Again nothing was found but he will be have a more sophisticated version (MRI) done soon.

Blood tests were also taken to check if there were any medical conditions that could be causing seizures.

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So what does a seizure look like?
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Umm good question, seizures look different in different people, so I can only describe the types of seizure my son has and what they look like.

Tonic/clonic

A tonic/clonic seizure is what most people would recognise as a seizure. Michael will fall to the floor and his whole body will convulse. These generally last from 1 to 2 minutes, for my son these are his least common type.

Absence

In an absence Michael will go completely blank, although he will continue whatever he is doing he is unconcious and "loses" the 30 seconds or so the absence lasts.

Partial Seizure

Michael's most common seizure type, for Michael this is either a shoulder shrug, or picking his lips not what most people would think of as a seizure. At his worst he was having hundreds if not thousands of these a day.

Drop (Atonic)

With this seizure Michael simply drops straight to the floor.

There are other types of seizure but these are the ones that I'm familar with.

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So how is it treated??
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The majoriy of epileptics are successfully treated with the first drug they try, I beleive the figure is approximately 70%. My husband is one of these, if he takes his drugs he remains seizure free.

For others like my son, the best we can do is keep the seizures to a minimum so that he can develop as best as possible.

For others surgery is an option, where the part of the brain causing the seizures is removed.

For yet others the ketogenic diet can help.

And for a very small minority there is nothing that can help, and they will continue to fit all of their lives.


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Living with epilepsy
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For the child who is undiagnosed life can be difficult, they can be labelled disruptive, lazy, unattentive when they are actually having small seizures that mean they are "not with it most of the day" .
For my husband, his epilepsy means he has to take drugs every day, is unable to drive, and finds working difficult.

For my son it means every day is a challenge, besides the drugs he takes, he must be watched constantly (he once had an absence and walked in front of a car). He needs to wears sunglasses while outdoors as reflected light affects him. He will probably never be able to drive, and we are not sure if he will be able to live independently. But I must stress, he is at the worst end of the spectrum.

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What to do if your child has a seizure
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Make sure they are safe, this is easier with a child than an adult. If they are hitting their head on the floor then put something under it. This is all you can do at this stage.

If it is their first seizure call an ambulance.

If the seizure lasts more than 5 minutes or another one starts before the child regains conciousness Call an ambulance. If you have emergency meds now is the time to give them.

When the seizure finishes, you will probably find the child goes to sleep, now is the time to check the airways and put the child in the recovery postition.

If the seizure seems unusual for your child and you are worried call an ambulance, otherwise let them sleep it off while you keep an eye on them.

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What not to do
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Do NOT try to physically stop the movements of the child, you may end up injured and the child's bones may break.

Do NOT try to put anything in their mouth while they are fitting. My brother-in law wanted to put his hand in my son's mouth, I said "you're welcome, but I'm not doing first aid when he bites your fingers off"

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And Finally
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This review is based on my experience as the mother of a child who has had epilepsy for 6 years. It is not a replacement for advice from a doctor.

No matter if your child has epilepsy or not, you learn to cope with whatever life throws at them and love them for who they are.


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For further information
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Please visit :
General : www.epilepsy.org.uk
For parents : www.pokwe.uk.org

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