He nearly killed my daughter! (My Experience of Epilepsy)

Member Name: kimgraham

Product:	My Experience of Epilepsy
Date:	14/02/02 (154 review reads)
Rating:

Advantages: none

Disadvantages: see opinion

Epilepsy.

The very word still carries a stigma and can create fear. For anyone that has witnessed an epileptic seizure (I think that is a much better word than "fit"), you will know that it can be quite scary. As a teenager at school I had a close friend who suffered from major seizures quite frequently. At first it was terrifying but you soon learn how to cope and not to be overwhelmed by it. I nearly said, "frightened" but that rather gives the wrong impression. The one thing that never failed to sadden me was the reaction of Joe Public if it happened when we were out and about. I suppose it is ignorance. That was a long time ago and I would like to think that as a society we have come a bit further than that!

I was not to know, at that time, how useful these early experiences of epilepsy were to be; or how they would come to affect me personally not too much later.

Those of you that have been following my opinions will know that Lady Luck has not always looked down kindly on me! She has also been pretty unfair to my eldest child, my only son who is now twenty-two years old. I have already written about him and his two other major health problems. It is, indeed Philip who has epilepsy.

As a small baby he nearly died from a severe food intolerance, which was not so widely recognised even as recently as twenty-two years ago! He has lactose intolerance. We finally had a diagnosis and Phil had been put on a special diet and begun to flourish. It was all very inconvenient in those days. We are so lucky now, you can get everything you need from the chemist or supermarket and everything is thoroughly labelled! Not so then- everything had to be ordered from the Doctor and food made freshly (better anyway really!) so that you knew what was in it! So, it was rather a lot of effort but at least he was well.

At about the age of ten months odd things started to happen. He would be lying on the floor playing
quite happily and all of a sudden he would go totally limp. His eyes were open but he had no idea that I was there or of anything else that was happening. His head rolled a bit and I also noticed that he was dribbling profusely. I picked him up but he was completely floppy. I ran downstairs to get his Dad but by the time we got there he was sitting himself up gingerly. He seemed very disorientated.

As luck would have it the Health Visitor was coming later that day. I mentioned it to her, but she felt I was imagining it! She did not put it quite in those terms but she poo- pooed my fears and said he was probably asleep. Well, I am not a stupid person. I know that babies do suddenly nod off unexpectedly, but not with their eyes open! It did not put my mind at rest so I made an appointment for the GP. True to form, you had to be ill a week in advance to get an appointment!! By the time we were seen the "occurrence" had happened again a couple of times.
The third time it happened I desperately tried to pull him round. He was clearly unconscious. I even pinched him to see if I would get a reaction! I felt bad but I needed to know if he was merely sleeping with his eyes open!

Off we trotted to the doctor. The doctor did not take it particularly seriously although he did examine him very thoroughly. Phil had had a cold and he put it down to that. A month went by and it was happening more frequently. His sheet at the head end of the bed was often soaking. I thought perhaps it was urine and that he had turned round in the night. So I smelt it- nice! The things we do for our children!!!! It was not urine. Back we went to the doctor. He said he would refer us to the hospital but he was not convinced there was anything going on. I noticed he had written on the letter to the hospital "possibly a neurotic mother?".

I was fuming. We went home to wait for our appointment. In the mean time the health visitor was sent round. I told
her that I was very angry that such a thing should be said about me to the hospital and that it was utterly untrue. She agreed with me and said she would talk to our GP. While she was there Phil had a very small seizure. Thank God, someone else had seen. She agreed it was not right and said she would have the appointment sped up.

By now this had been going on for about three months. Philip was walking holding on although he would not let go. It was difficult for me to carry him about, as I was very pregnant with my second child. He was a very intelligent little boy and was already talking in sentences, albeit simple ones!

I took him to the hospital but they could not find an obvious problem. They informed me they thought he was perfectly ok and could I possibly be over reacting?! I told them what the Health Visitor had seen and they changed their tune a bit after that! They told me to bring him back in three months with a written chart of everything that happened.

Within those three months my daughter Laura was born and we had to move house. Phil was also walking. In the new house the stairs went straight up, more or less from the front door. They were amazingly steep. One day I had not realised that Phil had gone upstairs and I went to get the post. There was a resounding crash as Phil went headlong down the stairs and landed at my feet. Fortunately, they do bounce a bit at that age! He knocked himself out briefly so off we went to casualty in an ambulance. (My car was off the road at the time).

When we got there the Doctor thought he would send us up to neurology for an EEG (a brain trace). The doctor who had seen me when we went before just happened to be on duty. Phil was sitting on my lap facing the doctor who was taking notes. Then it happened- right in front of the Doctor! I have never been so glad to see a seizure. I hope that doesn't sound awful!

"You see!" I said, "I told you!"
<
br>The Doctor said he felt I was due an apology. He asked if I minded if he tried to induce a fit while the electrodes were on Philip's head. He flashed a light on and off in his face. This definitely had the desired effect and they were able to see exactly what was going on as it was happening. At last, we were getting somewhere.

After many more visits and tests it was decided that Phil had Temporal Lobe Epilepsy coupled with Photosensitive Epilepsy. He was put on medication which then confined all the seizures to when he was asleep apart from if he encountered flashing lights.

The medication made him very dozy and we had to work hard with his learning skills. When he got to the age of three. We had huge problems finding a Playschool who would take him. It was a huge stigma and people were worried if anything happened it would frighten the other kiddies. I began to feel like a leper. Fortunately we did find a nice caring playgroup that took him on happily as long as I stayed. After 6 months they were happy to cope without me.

Mostly he was fine, most nights he had a seizure but as long as he took his medicine regularly he was great during the day. Then, another disaster struck! He and his little sister were great pals and did everything together. She was vocally extraordinarily forward and at twenty months old could hold a decent conversation with you. I could hear them upstairs chatting happily away and left them playing. We had a stair gate so they were nice and safe. Or so I thought! I went into the garden to hang out the washing. When I came back I went upstairs to catch Phil spooning the last dregs of a full bottle of epilepsy medicine (Epilim) into his little sister. There was no way he should have been able to reach it. We had a high shelf for his medication only ten inches lower than the ceiling. It seems that Laura had felt left out and wanted medicine like her brother. Being a kind and loving elder brother he liked to pande
r to her every whim!

He had pulled a huge Victorian chest of drawers across the room and balanced a chair on top. He then went mountaineering! Even I could not move the chest on my own!
Had I not been in the garden I would have heard the furniture being dragged about. This is a guilt I carry to this day. My baby girl could have died. These days they both think it is hilarious and often tell the story. Off we dashed in an ambulance to casualty. The Doctor was really nasty. She said my baby could die and it would be my fault for not keeping the medicine safely. This was unfair, I would never have thought a three year old would or could move furniture that I found too heavy to move. They gave Laura an emetic to make her vomit. They told me that she would be extremely sick but as it was my fault they would leave me to clean up all the floors! She was very sick and yes, I scrubbed all the floors. I was young and did not like to make a fuss, besides which I was more worried about my baby! To cut a long story short she had several days in hospital and is still here to tell the tale. She writes on the site sometimes! Look out for Greeneggsandham. We quickly bought a locking cabinet after that


We then moved to Basingstoke. When Phil started school he was a bright little boy but his education began to suffer. He was a fluent reader at four and was quite numerate, too. To achieve this he needed loads of cajoling as the medicine made him very dopey. He was sent to the school nurse at lunchtime for his second dose. His teacher said he was under achieving because he was dreamy and wouldn't concentrate. I explained (as I had done when he started school) that this was due to the medication he was on. "What medication?" "The stuff for his epilepsy that you send him for every day" I thought she was an utterly stupid woman. These days he would have a special needs teacher assigned to him!

Anyway, we muddled through. A
s everything was now only happening at night we agreed, with the hospital, that when he started secondary school he should be weaned off the medication. This was to give his education a chance! It seemed fine! It has always stayed at night time seizures apart from the Photosensitive Epilepsy, which he has to watch out for. I will explain more about that in a minute. Ironically. He had only been off the medication for a few months when he contracted juvenile arthritis. I told you life had not been fair to him!

I hope that these days the stigma is not as bad and I am sure schools are more clued up, but I thought I would share my story in case it helps anyone.

They think that Ezekiel, Joan of Ark and Lewis Carroll had Temporal Lobe epilepsy, so I will tell Phil he is in good company. The only shame now is that he has not been able to drive. His arthritis has returned and driving would have been useful for him!

Let me tell you a little about epilepsy. I won't go in to huge detail, as there are doctors on the site who could do it much better than me!


WHAT IS EPILEPSY?

Simply, it is a symptom of an underlying disfunction of the brain. It causes braincells to "misbehave" if you like! It can affect only part of the brain - focal epilepsy or all of it- generalised epilepsy. Epilepsy is extremely complex and there are many subtypes.


PARTIAL EPILEPSIES

This type have a clearly defined focal area in the brain, e.g. frontal lobe, temporal lobe etc

Characteristic symptoms are motor difficulties down one side of the body and visual hallucinations. This reminds me of my migraine- how strange!

The following are types of partial epilepsy:

OCCIPITAL EPILEPSY
BENIGN OCCIPITAL EPILEPSY
FRONTAL LOBE EPILEPSY
BENIGN ROLANDIC EPILEPSY
MESIAL TEMPORAL LOBE EPILEPSY
PARIETAL LOBE EPILEPSY

Phil's symptoms were pretty much the Benign Rolandic Epil
epsy although they said it was temporal lobe. In those days they were far more unsure about things, and were honest enough to admit it!


GENERALISED IDEOPATHIC EPILEPSIES

These have no defined area of the brain. Ideopathic means that there is no clear environmental cause and it is assumed to be genetic. The EEG can be normal between seizures.

BENIGN MYOCLOMIC EPILEPSY IN INFANTS
JUVENILE MYOCLOMIC EPILEPSY
CHILDHOOD ABSENCES (PETIT MAL)
JUVENILE ABSENCES
CLONIC SEIZURES (GRAND MAL)



GENERALISED SYMPTOMATIC EPILEPSIES

These also have no focal part of the brain. It can all be affected. Symptomatic means that there is a structural abnormality of the brain.
This includes:

INFANTILE SPASMS
LENNOX-GASTAUT SYNDROME
PROGRESSIVE MYOCLONIC EPILEPSIES


UNCLASSIFIED EPILEPSIES

FEBRILE FITS
EPILEPSY WITH CONTINUOUS SPIKE AND WAVES IN DEEP SLEEP
LANDAU KLEFFNER SYNDROME
RASMUSSEN?S SYNDROME



WHAT IS THE CAUSE OF EPILEPSY?

Up to 2% of the population has epilepsy. The true number is almost certainly higher, but due to the stigma and fear many people do not seek treatment.

In 75% of cases there is no known cause. The other 25% the causes are:

Brain injury to the foetus during pregnancy (ooh, the mind boggles)
Birth trauma, such as lack of oxygen
Poisoning from either solvent abuse or environmental factors e.g. lead poisoning
Post infection- meningitis
Head trauma e.g. car accident
Alteration in blood sugar levels (hypoglycaemia)
Brain Tumour or stroke
Genetic defect


PHOTOSENSITIVE EPILEPSY

This can be part of another type of epilepsy or it can, more rarely, be suffered on its own!

Seizures can be brought on by strobe lights, flickering fluorescent lights, looking out of a train window, sunlight flickering on water and sometimes-geometric shapes such a
s checks and stripes. This is a shame for youngsters as it makes discos a bad idea. Even these days Philip avoids discos. At weddings he is often found outside chatting with a fag and a drink! He feels it just isn?t worth the risk. Flashes of 5/30 Hz per second can bring on seizures! Thankfully, VDU?s are usually ok.

Interestingly, the lights and shapes can bring on my migraine. I wonder if there is a connection?


So there you are! I bet you thought that epilepsy only came in two types- Grand Mal where the seizure has you writhing all over the floor, or Petit Mal, where it as though somebody has temporarily pulled out your plug!!

As I said, it is a very complex disorder. There is no need to be afraid if someone has a major seizure. Turn them on their side and do not interfere too much. Treat them gently when they come round. Most of all please treat an epilepsy sufferer as though they are normal. I hated it when people called my little boy a freak!

Thank you for reading.

Summary: