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Friday

Eve had her final two tests at Great Ormond Street today. What they call a functioning MRI scan, where the scan is done whilst the patient answers questions, was followed by a repeat of Wednesday’s SPECT scan, this time under ‘normal’ conditions for comparison purposes.

Eve has been an absolute trouper and has had not one complaint about the injections, the lying still for 40 minutes at a time, the deliberate inducing of seizures, the electrodes glued to her head etc. etc.

When it came to say goodbye and thank you to the nursing staff at Great Ormond Street, I am not ashamed to say that I cried like a big jessie. I have stayed with Eve in two other hospitals. Hospitals where patients and parents can’t get a decent night’s sleep for unnecessary noise, regrettably much of it from staff treating the night shift as an opportunity for a loud gossip and laugh.

The nursing staff at GOSH are thoroughly professional in that respect, to the extent that a pin dropping would shatter the peace.

So to all the staff at the Tiger Ward at Great Ormond Street I send Eve’s and my thanks. In particular the genial Irish nurse in charge, Tom who is not only a thoroughly good bloke, but someone who I think gets a great deal of satisfaction from his job. However Tom has a great team of women behind him and I thank each and every one of them for their dedication, patience and professionalism.

To Kelly and Laura from the Telemetry team, thank you for everything. To the staff at the MRI dept and those who conducted the SPECT test, take a bow.

I’m typing this from the Patient’s Hotel, just across the road from GOSH. It is 11pm and I’ve just heard about the awful events in Japan.

A fox has just run across the courtyard outside.

News is coming through that our return flight to Glasgow could be delayed due to heavy snowfall.

We’re back in the real world.

Thursday

Thursday:

Another psychological test for Eve this morning. These tests are to determine what effect the condition is having on her learning and reasoning skills. Despite having missed so much school, she has managed to keep up to the average in many subjects and is particularly good at maths.

The verbal/language side of things needs a bit of work. This is because the area of the brain responsible for language is where the seizures are starting. So even though Eve has pretty good communication skills and can express herself perfectly well, Sometimes she’ll struggle to find a common word which five minutes before or after won’t be a problem.

There is a “brain fog” with her sometimes and we have always put this down to side effects of the various medications but it has been suggested that it may be the epilepsy itself

While this latest test is being conducted, I go to the ward communal kitchen to make a cup of tea. I speak to a woman who is staying here with her son and he has the same problem. Our brief conversation provides some mutual moral support. Another lady is here with her son who has not only epilepsy but some other pretty severe learning issues. He does seem to love music though and yesterday some musicians came round and played live in his room.

The volunteers here do fantastic work. Eve has been kept interested and occupied in arts and crafts by several volunteer agency representatives who have come round with bits and pieces for her to do.

I have been vaguely aware of an older couple in the next room staying with a wee boy. I assume correctly that they are the boy’s grandparents.

There had been a real commotion on the ward the previous evening whilst they rushed this wee lad down to an emergency room. The grandparents explain that until six weeks ago he had been a normal healthy one year old boy but then that something had happened. Initially there had been talk of epilepsy but it had turned out that he had in fact suffered a stroke.
“The outlook is pretty bleak” said the grandfather. “It’s apparently genetic” said the boy’s grandmother, adding “But we can’t think of anyone in either family being affected before”.

Goodness.

I have noticed another lady pacing up and down the ward with a wee boy in a pushchair who has a kind of scaffold arranged on his shoulders to keep his head still. He looks as if he has suffered a pretty severe head injury. It’s clear the mother doesn’t want to speak about it and that’s fine.

As in most, if not all, cases of adversity one finds oneself in complete sympathy with others in a similar situation. You become interested in their trials and tribulations and naturally find a common bond and you want not only your own child to have a good outcome but you find yourself hoping and wishing for progress for others you have only just met.

The natural empathy of human beings is a very powerful thing. It may take suffering or trauma to bring it out and let it flourish but its there in most of us.

As if to illustrate that point, as I leave the kitchen, the grandmother of the wee boy says “ I hope they make good progress with your daughter”

With the latest test over, Tom the senior nurse says that there is nothing else for Eve to hang around for this afternoon and suggests that if we want to go out for a few hours that would be fine.

So Eve, despite still having the cannula needle on the back of her hand gets changed and we get the tube from Russell Square. Our first stop is Covent Garden. Eve loves the market there with its unusual stalls housed in what was London’s fruit market until the 1970′s. I feel a bit apprehensive as she is as white as a sheet and isn’t saying much – often a sign that she’s not feeling too good.

However in this constant game of benefit v risk I’m pleased that she’s getting some fresh air and vitamin D. I have her emergency medication and know that if anything goes wrong we can jump in a cab and be back at GOSH fairly quickly (traffic permitting)

After a wander round Covent Garden I wonder if Eve would like to go to one of the many museums in the area. The Transport Museum is at Covent Garden and the British Museum is quite near GOSH.

This idea isn’t received too well and instead we head for Knightsbridge and Harrods. We progress through the jewellery section. Here is one of the watches.

For payment terms see Easyjet's tarrif for Kit Kats and blueberry muffins.

Yes it does say £121,000. Not even a brand I’ve heard of.
I have developed an almost subconscious conversion chart and wonder what that amount of money could do to help the wee boy who had the stroke. Instead it will indulge the whim of someone with far, far too much wealth than is good for one person.

Not the Pet Kingdom - Just a corner of the perfume dept.

We go to the top floor where, along with the Georgian Restaurant there is “Pet Kingdom” and “Toy Kingdom” There were actually puppies offered for sale – a Chihuahua or a Boston Terrier? Your own wee handbag dug. A snip at only £2500.

Boston Terrier Pups

OK, you can have the dog. Just don't ask for a watch!

A man in a top hat holds the door open for us as we leave. On the tube again, we get off at Piccadilly Circus and start walking towards Oxford Circus. We find a quiet place to have something to eat. I order lasagne and completely fail to notice that it’s the vegetarian variety very nice it was, and Eve has a chicken burger.

Suitably sustained we decide to get back to the hospital.

Tomorrow (Friday) is a big day with the second part of Eve’s SPECT test and another MRI, this time to be done whilst she does various activities.

After that, and a further consultation meeting with the epilepsy nurse and her team, I’m hoping to meet up with Johnnie, an old friend with whom I worked in London in a previous life. He’s booked us a lunch table at an Italian restaurant just round the corner and all being well well meet up for the first time in over 30 years.

I’m actually quite surprised how quickly time has gone (The 30 years and the four days).

Tomorrow evening it’ll be back to the Patient’s Hotel and then home on Saturday.

I’m hoping that it won’t be too long before Eve is back here, either with me or her mum, to have the operation which could make such a huge and crucial difference to her young life.

That remains just a hope at the moment.

Maybe, just maybe, the information gained this week will go a long way to turning that hope, that dream, into reality.

Wednesday

Wednesday.

This was the most important day so far in our stay at Great Ormond Street. The SPECT scan cannot be done anywhere else in the UK but at GOSH. To summarise it briefly, a radioactive isotope dye is injected into the patient at onset of seizure.

Because blood rushes to the area of the brain where the seizure has started, the dye is deposited in that area. The brain is then scanned and the data recorded.

To do the test we had a five hour window in which a nurse was standing by with a syringe full of the radioactive dye, in this case Tom a cheerful Irish chap who puts his patients at ease with a laid back style and attitude.

Eve’s meds were withdrawn completely this morning. The telemetry team, Kelly and Laura decided to help a seizure on its way and after 5 minutes of Eve blowing vigorously at a toy windmill, and then being told to close her eyes, the event happened. Immediately Tom injected the dye and then they gave Eve the morning medication that she had missed as they now had the info.

The scan, just like the MRI scan she had on Monday requires the patient to lie completely still for 35 minutes. Again Eve did impeccably well and was up to the task.

More psychology tests in the afternoon and then the task of un-glueing over 30 electrodes from Eve’s hair and a very welcome bath for the patient.

She had another wee seizure later and was feeling pretty rough but hopefully now she’s back on full meds things will settle down a bit.

A repeat of the SPECT test will be done on Friday but this time without the seizure. This is done for comparison purposes and wont be nearly as traumatic. On Friday Eve will also undergo another MRI scan of a different type.

Tomorrow (Thursday) a day of activities, including some school work, is planned. At the moment (9:50 pm Wednesday) the patient is feeling a bit rough after a particularly demanding and stressful day so we’ll have to make an assessment in the morning on how fit she is to participate.

A whole lot of positives from the week so far. The telemetry team were delighted to have recorded such good and detailed information. This isn’t always the case, due to the unpredictability of the condition so things have worked out well within that bigger picture for Eve.

Tuesday

Tuesday:

Today at Great Ormond Street Hospital, we had a meeting with Eve’s medical team in the morning. There were about eight doctors and medical people various of whom were chipping in with comments and observations relevant to Eve’s case with hardly a reference to notes.

Epilepsy is a generic name for seizure disorder. There are many, many different types and diagnoses and the condition affects each individual in different ways. That is why when a team like this visists, and displays such individual and definitive insight it really gives the patient and their family such a boost.

There is nothing worse than seeing a doctor flicking and scanning through notes and asking questions that anyone even remotely connected with the patient should be able to answer.

The doctors were very impressed wth the information provided via Seizure Tracker. It is one thing to keep a seizure diary but the clear and concise format provided by Seizure Tracker, where a doctor can see the seizure record at a glance in graphs and charts is a very valuable and precious resource. I was amazed that the doctors didn’t know about the site. As well as providing the numbers Seizure Tracker also records the medications and rescue medicines and charts various information.

I had envisaged (and had been promised) ward wi-fi access which would have allowed me instant bedside access to information via the site to any passing doctor or other interested party.

Instead one doctor took me to her computer and I showed her Eve’s case history on Seizure Tracker. She was able to navigate the site and got the whole thing instantly. The previously rather stern doctor was immediately engaged and impressed. “This is quite amazing! – I can’t believe we have not heard of this before”. She printed off screeds of charts and information and I have a feeling that this resource will be recommended to other patients and their families.

Having dropped Eve to half medication, the doctors hoped that we could capture one of her events via telemetry. The drop in meds is an attempt at inducing seizures. As I mentioned she has over thirty electrodes on her head and a video camera constantly records her movements. This is what they call telemetry. I had been coached in what to do in the event of something happening. I was to make sure I wasn’t blocking the camera and was to clearly describe what was happening, i.e. provide a running commentary.

I was to make a statement to Eve during the event and ask if she could remember it afterwards. Then as she came out of the seizure I was to give her various instructions to see what she could understand and follow.

Well eventually we got an event on camera and I remembered all the stuff. The telemetry team were delighted with the quality of information they got from the video which they can watch along with a simultaneous recording of the readings from the electrodes.

During the day there were also tests from the psychology team who gave Eve written and verbal tests in all manner of subjects.

It’s a busy place!

If it isn’t medical or psychology staff, then there will be a play leader or Radio Lollipop volunteer or someone coming in to see us.

Yesterday there were two clowns doing wee impromptu shows in the ward, great for lifting the spirits of the younger kids here.

During the evening and after a rather tiring day we wound down with Snakes and Ladders, Ludo and one of these timber pile games where you have to remove blocks from the pile without it collapsing. Anything to ward off boredom and, well fedupness.

Tomorrow the medication is to be withdrawn completely. The idea then is to inject Eve with an isotope dye whist she is going into a seizure. This will allow the telemetry team to see the blood flow in her brain as the seizure develops.

It’s a strange feeling. Most of the time I’d do anything to prevent my daughter suffering a seizure.

Tomorrow I’ll be almost willing it to happen.

(Thanks to the satellite flying over at the right height angle I was able to upload this at 5:30 am Wednesday having written in on notepad in our room in the hour previous. This Vodafone mobile access is bloody temperamental!)

Monday

Monday:

Up bright and early for our 9:30 admission appointment at the Tiger Ward, Great Ormond Street Hospital. Despite having not been too good on Friday and Saturday, Eve has been ok so far on the trip.

Eve is assigned a nurse, who is going to oversee her treatment and medication. We also meet a nurse, from Wexford in Ireland who once worked in Glasgow and lived in Paisley, who will also be involved in Eve’s care.

In the morning she has an MRI scan. This is a process where the patient is slid into a large horizontal cylinder with a contraption round their head. The scan takes 45 minutes in all and requires the patient to lie perfectly still. Should the patient suffer a seizure or move at all, the process has to start again. It’s a noisy procedure. Eve is provided with headphones and watches a movie (Shrek 2) while it is all going on.

That done, around 30 tiny electrodes are attached to her head which are to remain for the week. These pick up the activity from all the different areas of the brain whilst a camera records the patient’s every movement and saves it to a hard disc.

This procedure can and has been done at Yorkhill Hospital in Glasgow. The reason we have had to travel for this appointment is that GOSH is the only location in the UK where they can conduct a SPECT scan. This procedure involves injecting the patient with an isothope dye whilst they are having a seizure. This allows a monitor to track the blood flow to particular areas of the brain and tells the story of what is actually happening during the seizure.

This will take place on Wednesday by which time Eve’s meds may be withdrawn completely. Currently she is on a half dose.

I wrote in a previous posting about medication not completely or even sufficiently controlling seizures in my daughter’s case. There are many anti convulsant drugs and as a general rule of thumb any one of them should provide a 70% chance of being successful of reducing seizures to, or very near, zero. If however the first medication tried doesn’t work then the possibility of a subsequent drug or combination of drugs working reduces to about 25% and reduces further as more are tried.

That is why we are here.

Sunday

Sunday:

We had a good journey and a good day. From take off at Glasgow Airport to stepping through the reception door at Great Ormond Street Hospital took precisiely three hours.

It was a bit cloudy on the flight but we did see a sea based wind farm! Easyjet is cheap and convenient but the extras pile up. We had a cuppa and biscuit on board and went for the low interest repayment terms over two years to settle the bill.

After landing at Gatwick we boarded the Gatwick Express train which takes about half an hour from the airport to Victoria in central London. As we passed through Clapham Junction, the old Squeeze song sprung to mind and I haven’t been able to shift it from my brain playlist since.

Did you know that Clapham Junction is the busiest railway station in the UK? Neither did I but it must be true because the station sign says so.

However, having seen Clapham and how busy it was, certainly today, Victoria seemed much busier when we got there. As you know I’m a nostalgic old sod and I couldn’t help but reminisce to the London I knew in the late 70′s and early 80′s when I was based there.

At that time all the shops in town were closed on a Sunday and there was hardly a car on the road. Anyyone who wanted a bit of retail therapy would have had to head for Petticoat Lane Sunday market ‘darn the east end’.

Today there were rivers of people (tm James Grant) all over the place and every shop was open. Our taxi driver from Victoria was probably of a similar age to myself so we conducted a nostalgiafest type conversation en route. To summarise, it went, Monty Python style: “Oh yeah, that’s right! blah de blah! de blah! tell the young people of today that? They’ll never believe you!” – Nothing nostalgic about the taxi fare mind you.

Our driver reckoned that because the congestion charge doesn’t apply at weekends, Sunday is probably the busiest day for traffic in town.

We spent the afternoon and evening looking around the shops and seeing the sights. Eve wanted to visit Hamley’s toy shop although she’s too old now for many of the items on sale, she enjoys arts and crafts and jigsaws so had a ball looking around there. I took her around Leicester and Trafalgar Squares. And we got some photos.

This restaurant name raised a smile

Picadilly Circus

She got the choice of the venue for our evening meal and Pizza Hut won over a curry. There is one not far from Great Ormond Street.

The nearest tube station to the hospital is Russell Square, and of course one can’t see or hear that name without thinking of the bus bombing that happened there.

If only I'd noticed this sign at Russell Square Tube BEFORE we climbed it!

The Patients’ Hotel is just 100 metres or so from the hospital. Basic, but all you need and with en suite facilities. The Hotel was paid for by the Variety Club of Great Britain and I think the name ‘Weston House’ must be after Simon Weston. It is a facility which has made our trip, and no doubt that of thousands of patients and their families, that bit easier and more convenient.

Indeed one wonders how many families would find the cost of central London hotels a real stumbling block in the life or death situations some of their kids face.

The promised wi-fi at the hospital didn’t materialise which is a big disappointment for the wee one. It’s a closed system apparently and the lady who had told us last week that we’d have access was mistaken. Ho-hum!

This is being uploaded via a rather temperamental Vodafone dongle from the corridor at 3:30 in the morning. Reassuring to know that my insomnia is keeping up its regular pattern!

I am still working on Monday’s post and if the satellite flies over at the right angle and height tomorrow I’ll be able to post then.

Eve is doing fine so far and has already had an MRI scan. More news tomorrow (Hopefully).

Thank you all for your good wishes. It’s keeping us going here.

The E Word (Drugs Don’t Work)

“We’ll try this drug” said the neurologist. “It’s called Tegretol and has a good track record with minimal side effects” she continued

It was clear that my daughter’s seizures were becoming more frequent and medication was identified as the way forward treatment wise.

So we started with Tegretol, no real improvement. Another drug, Lamotrogine, sometimes known as Lamictal was introduced along with the Tegretol. This sent the frequency and intensity of seizures into overload.

So we tried another drug, Keppra (I am using the brand names of these drugs rather than the generic names) which seemed to work a bit better for a while but then there was the ‘brain fog’ and the weight gain – both side effects of the medication concerned.

Next up was Topamax which initially seemed to contribute to an increase in “wellness” for my daughter. Hitherto if she wasn’t actually suffering seizures, there would be many times when she would have “auras” (i.e. warnings of seizures). Other times she would have a constant headache or sore tummy.

In time we learned that these were seizure activity themselves but hadn’t developed into what we recognised as a seizure.

There were the short 1-3 minute events which we learned were partial complex seizures and then the longer, fully unconscious ones with legs and arms twitching which are known as generalised or Tonic Clonic seizures. Previously these were known as ‘grand mal’ seizures.

I’ll never forget that last year we invited several of her friends to a birthday party for my daughter. We all went to X scape which is an entertainment complex amongst whose attractions is ten-pin bowling. We had a great time playing the game and were to have finished up with a birthday tea at the venue.

By the time we were supposed to be sitting down to the meal, we were dealing with an emergency. Several partial seizures were followed by a generalised one.

So cruel, just a wee girl wanting to enjoy her birthday party with her friends and then it happens again.

The friends and the parents understood.

But……………

We heard about a diet, the ketogenic diet which is similar to Atkins. The starving of carbohydrate can work for seizure control but not generally very well in the type of sezures which my daughter has.

Nonetheless her name is on the waiting list.

Waiting list? yes it has to be done under strict supervision of a dietician.

We tried a chiropractor. Was it a poor spine alignment or something similar causing pressure on the brain? Perhaps there was some marginal benefit but no appreciable long term improvement.

The truth is though that nothing has controlled her seizures to the degree that she can enjoy a normal life.

The medications have helped to various degrees but have come nowhere near to controlling the seizures. So despite 70% of sufferers of the condition having complete, or near complete control of seizures via medication, it seemed that my daughter was in the other 30%

She has missed around three quarters of her schooling in the last three years, which has brought us into conflict with the education authorities (the ‘unsatisfactory’ attendance on the report card is particularly cruel – I mean what are you supposed to do?)

So difficult was my daughter’s case that her neurologist called in a London specialist for a second opinion. However after two consultations he referred her case higher still to the top neurologist at Great Ormond St Hospital in London.

Whilst I’m being careful here not to use any names, a quick google would confirm that the lady in question is Professor Cross, one of the foremost paediatric neurologists in the world let alone the UK.

My daughter has had EEG and MRI scans. From these Professor Cross identified a pattern. We were almost five years down the line with nothing more than a generic diagnosis of “epilepsy” – albeit that it was temporal lobe epilepsy (the area of the brain where seizures were originating from). Otherwise the label was that the epilepsy was “idiopathic” meaning that there was no known cause.

Professor Cross, in an appointment in July 2010, expressed that she would like to have my daughter down to Great Ormond Street for a week of tests based on what she had gleaned from her previous results.

“If we find what we expect to find, she will return for keyhole brain surgery which has a very good chance of curing her epilepsy”

CURING?

Well yes we’ll go for that!

Hang on……..

DID YOU SAY…….BRAIN SURGERY?

“It is a matter of routine for us at GOSH. The same girl before and after the op – I promise”

A possible date of November 2010 was mentioned but after several delays, March 2011 it was.

And so dear reader it is tomorrow that we embark on the journey to London to begin the week of tests on Monday.

I will be at GOSH and, as I have already intimated, depending on the availability of wi-fi and the amount of participation I have with my daughter’s treatment, I’ll do my best to at least keep the blog going during the week.

If I can perhaps add a footnote here, it would be to say that until you find yourself in a situation like this, the National Health Service may not be too far up your priority list. Since this condition affecting my daughter, I have learned of parents in the USA who have to somehow find hundreds of dollars per month for their children’s medication. If they have to call an ambulance it can cost $1000.

Conversely, we are being put up at a patients hotel, pre and post hospital stay, and all the medication and expertise are free at the point of delivery.

This is an ideal and a service worth fighting for.

The E Word

I haven’t been in the habit of referring to my family much on this blog, other than in passing. The reasons are many, varied and justified. For example it’s one thing to lay one’s own life and opinions open to scrutiny on the internet but quite another to involve loved ones in that scenario.

I am going to make a very big exception to that in this posting, and possibly over the next week in others, depending on how events develop for my younger daughter. Again the reasons are many and varied but the main one is hope. That and the fact that maybe I can share some of that hope with parents who find themselves in a similar situation.

Let me give you a bit of background:

It was early December 2005 and we had moved house a couple of weeks previously. Life was good, nary a trouble on the horizon other than being a busy family and dealing with everything that normal families have to deal with.

It was a Sunday’s events that was to turn that happy state of affairs on its head. It was 7 am – I am always first up in the house (one of the reasons for this blog is to fill the time between 5am and 7am when I’m up and about).

I was just going to make some breakfast when, for some reason I decided to check on my younger daughter, then just five years old. I went into her room to find her in bed, eyes wide open and staring but strangely flicking from side to side. I thought at first it was maybe a dream so I spoke to her, but there was no response.

I shook her gently again saying her name, but the strange eye flicking continued, as did the lack of response.

Very quickly I woke my wife and called 999. The lady at the other end of the phone told me to get my daughter on to the floor and away from any obstructions whilst we waited for an ambulance.

The ambulance duly arrived after what seemed like an age but in reality was, I suppose about ten minutes. The paramedics said they’d been delayed by the fact our house was new and they didn’t have the address on the GPS. They also said some rather uncomplimentary stuff about speed bumps as they quickly set about treating their patient.

There were injections and drips and poking and prodding and…., well to be honest it was all a blur. They very quickly decided that my daughter would have to be rushed to hospital. I was to accompany her in the back of the ambulance with my wife and other daughter following in the car.

As we progressed on the first part of the journey it was only then that I sensed that the panic that had gripped my wife and me, was not exclusive to us. The paramedics who up until then had been cool calm collected and professional were obviously tense.

“Fucking speed bumps!” shouted the driver as the saline drip and other equipment shoogled around. The other paramedic kept things steady as he looked at the various monitors which were connected up to my daughter. The speed bumps safely negotiated, the blue light went on.

Thankfully, being a Sunday morning, roads were quiet. When we did encounter traffic and traffic lights the siren went on and the foot went down. I don’t know what speed we were doing but it was fast. My wife did her best to keep up in the following car.

About five miles from the hospital, the monitors changed. Don’t ask me if they went haywire or still because I don’t know. All I remember was the hitherto cool, calm but tense paramedic in the back shouting stuff to the driver, and him shouting stuff back and the ambulance gaining even more speed.

“What’s wrong?” I think I said. It may in fact have only been a look but the paramedic replied “She’s very poorly – I’m doing all I can!”

“I’m doing all I can?” I thought “Shit!” that’s only one step away from “I did all I could!”

We got to the hospital after what seemed like a very long 22 mile journey despite it being probably the fastest I have covered that ground in any vehicle. My daughter was whisked immediately to a treatment room. She was unconscious and whiter than a sheet.

Over the following few hours we watched quietly and nervously as a nurse cared for my daughter. He was looking at books at various stages. I noticed one page about meningitis. “Is that what it is?” I said.

“We don’t know yet” replied the nurse – a man called Frank – but this was no time to stereotype.

By 1pm and with grandparents present she still hadn’t regained consciousness. Nurses and doctors were speaking in hushed tones.

No-one else present was speaking at all, just staring at a wee girl and willing her to make some sort of movement or sound.

At 2pm I heard it.

“Ow!” she said. “Did you hear that?” She said “ow!” “Definitely! she always says it when something is sore! She said ow!”

“Are you sure?” said the nurse “I didn’t hear anything” but with that she said it again, only louder this time and her eyes opened slightly. After seven hours she was starting to regain consciousness.

By five o’clock she was taking some toast and a drink.

I was ready for a drink all right.

After a few days in hospital and with our daughter gradually returning to her normal self, we felt a great sense of relief. No explanation had yet been offered but there were vague suggestions of infant febrile convulsion.

Everything gradually returned to normal until one day in April 2006 when the school phoned. My daughter had collapsed in the playground. She had regained consciousness but had hurt her face and didn’t seem 100% “with it”. Another trip in the ambulance, and more tests.

There were more incidents, more hospital visits and more ambulance dashes over the ensuing months. Nothing quite so traumatic as that first time but traumatic nonetheless.

After the third or fourth event we were attending an appointment with the paediatric neurologist who dropped the bombshell. The results of initial tests had confirmed what they had suspected and that was that my daughter had epilepsy.

Epilepsy! the word echoed and echoed in my head. No surely there was some mistake, febrile convulsion they’d said – maybe it could just have been that eh? surely………..I mean she’s a normal healthy wee girl, isn’t epilepsy generally associated with kids with other medical problems? developmental delay? that kind of thing?

I may just have been thinking the above or I may have said it out loud- I can’t remember. The neurologist explained that she was confident that medication would control the seizures. The prognosis on that front was good – seventy percent of sufferers have their symptoms and seizures controlled completely by medicine.

We drove home from the appointment not saying much. Obviously my wife and I didn’t want to discuss things in front of the kids but we were probably thinking the same thing.

Epilepsy! that condition surrounded by ignorance, prejudice, stigma and discrimination. That condition characterised by superstition, suspicion, myth and biblical mystery.

I already had very direct experience of the condition which I’m not going into here other than to say that it had already had a very profound effect on my life through my late father.

However on checking various books and googling it was clear that there were very many different diagnoses of epilepsy and many different types of seizure. There was a whole gamut of drugs (with attendant side effects), alternative therapies and surgical processes which could alleviate symptoms.

There was however no exact science.

It was a condition, or number of conditions which seemed to affect each individual in different ways.

It was the start of a long frustrating journey.

To follow soon: Drugs don’t work

Wonderful Resource for Epilepsy Sufferers

If you or any of your family suffer from any kind of seizure illness, you’ll know what an effect it has on the life of sufferers and those around them.

Let me recommend a wonderful FREE resource called Seizure Tracker where you can record medications being taken, and seizure activity. You can also record the type and length of seizure, possible triggers and other contributory factors.

Once you have done this over a significant period , it builds into a case study and you can compile online reports and graphs (at the click of a mouse) which can be emailed to doctors and consultants. Keeping a paper seizure diary is all good and well but in this format all the information is presented in an easy to understand and concise form which would tell any doctor much more relevant info than they have at their fingertips.

Has one drug been more successful than another? is there a pattern? Is there a time of day when the patient is more susceptible? Should certain events and circumstances be avoided?

If you or someone close to you is a sufferer then I urge you to CLICK HERE and give it a try.

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