Good bits and bad bits

Another week is over! A week of highs and lows, good bits and bad bits, knowledge and ignorance - Normal really!

High bits. Stevie's magnificent hanging basket for the house in apology for some grumpy behaviour, being in good order throughout the week with no cluster attacks and just a few single or double seizures and being pretty cheerful all week. He also helped me deliver an Epilepsy Awareness lecture to the members of staff of a care home.

The BIG low of the week was Stevie having a seizure while walking down the street in Cardiff with me. He stopped, head down, arms posturing and a groan. Typical seizure for him but he didn't collapse. I was standing holding him up waiting for the seizure to pass when I noticed a woman with her child look at us, grab her child's hand and cross the road to avoid coming near to Stephen. When I said "Do you think he is infectious or something? He suffers from Epilepsy, not the plague!!", she shouted (Yes shouted!) "If he acts like that, he shouldn't be let out!" And marched off with her child. Thank God Stevie did not hear that.

Some peoples ignorance is amazing and very saddening. I really hope Stephen never has to hear this sort of stuff. Unfortunately he is almost bound to.

This is what one of Stevie's seizures look like.

 



 



This is what Stevie's seizure looks like on his EEG:-

1

2

3

4

 

 Just look at these 1 - 4 and try to imagine what it would be like if this was going on in your brain!

 

 



Genetics

Another day, another set of mixed emotions...........

Stevie went off yesterday morning to his Day Service with the knowledge that I would be coming later to collect the hanging basket he had made for us to have at home.

I was not really expecting too much as you have tendency not to with his conditions etc. but Boy was I wrong!!

It weighs a ton and is gorgeous! I had to buy a large heavy duty bracket to hang it outside our front door. I should have known really as my father was really good at hanging baskets. I can remember them hanging outside of the pubs etc. that Mum and Dad ran for years.

The genetics may have rubbed off in some way, and hopefully all good!

It's a beauty! As you can see.

However when he got home and sat down for tea etc. he promptly had 2 full seizures and 3 or 4 small absence type seizures. Completely blew my good mood and Stevie has been distracted, confused and slightly difficult all evening. It is as if when he has one of the full focal seizures, his brain scrubs all his immediate memories and he cannot remember what you said to him 2 minutes ago. Or how he should behave and remember his manners..

It is one of the aspects of his condition(s) that the memory can be seriously affected, especially short term memory.

Ah well, ever onward! Stevie and I are off to the bank shortly to arrange a prepaid card for our holiday. 2 Aug and can't wait!

What is it about certain days for people with epilepsy?

Today Stevie has fluctuated between wide awake and fast asleep, sometimes within 5 minutes of each other!

This morning I had to get him up a bit early as I was due to give an Epilpesy Awareness lecture to the staff of a care home in Penarth who were going to get a new resident who suffers with epilepsy. He was wide awake to sleepy within seconds during the lecture and I don't think it was my delivery! Anyway the lecture went well and Stevie managed to have an absence seizure right on cue when I was talking about them. The mans timing is exquisite!

We had lunch and came home. I decided that then we would go for a walk around the marina in Swansea to give Lily the Lurcher some exercise.

AGAIN Stevie fluctuated between wide awake and fast asleep within minutes. He perked up no end when we saw his favourite secondary school teacher, Dave Heal cleaning his boat in the marina. We went aboard and had a great chat for 20 mins or so. Dave Heal was always interested in Stevie, his problems etc and Stevie naturally reacted to this interest throughout school and even now.

 

 



Porobably the most relaxed and interested he has been all day! Thanks Dave.

Back home now and waiting fro Jan to get home and then TEA! So far a strange day! I think we may have a collapse later. Not that there has been any trigger or "aura" to show but just a feeling...............

Intro !!!!

This is my first ever blog so I must apologise now for any cock ups, etc. and say that this is my own thoughts etc. on living with and being a parent to a wonderful young man.

Unfortunately Stephen (Stevie) suffers from epilepsy which is currently uncontrolled, and learning disabilities.

I will probably say things on here about the situations, treatments, attitudes etc. that I would not say anywhere else, so if I upset anyone, sorry but tough!


OK a bit of history first.................

Stephen was born in March 1993, premature by Caesarian. His early development seemed OK, maybe a bit slow in some areas, but his learning disabilities were diagnosed eventually and he was statemented almost as soon as he entered mainstream primary school. He suffered from attention problems which now seem to be "absences" which are a from of epilepsy. More on that later.......

He was able with support to continue through mainstream schooling, primary and secondary and despite his difficulties came out of the school system with some basic qualifications. With one glaring exception (no names, no pack drill), his teachers were brilliant with him for which we are VERY thankful. The learning disabilities are there and will be for the rest of his life.

One of the challenges.

Stephen was diagnosed with sub clinical epilepsy in 2006 after becoming regularly vacant and unresponsive for up to 2 minutes at a time after which he would not know where he was, what he was doing or what date or time it was. He got very upset as a result after these episodes.

The epilepsy has developed into full blown drop attacks (Tonic Clonic Seizures) at around the age of 16 and at their worst he was having upto 5 of these "drop attacks" a day. We are very well known in Accident and Emergency at Morriston hospital here in Swansea. We have lost doors, plasterboard walls and Stevie has been down the stairs at home a couple of times. All thankfully without any serious damage. Unfortunately the same cannot be said for Jan, Stevie's Mum. He had a drop attack in the kitchen a year ago and took Jan and a load of crockery out. Unfortunately Jan landed in the broken crockery with Stevie insensible on top of her and gashed her hand badly enough t need an operation to repair the damage.

The number of drop attacks has dropped but we still get them regularly with no warning

Another challenge.

Since the diagnosis he has been on a selection of drugs for epilepsy, the vast majority of which are derivatives of anaesthetic drugs, or have a considerable anaesthetic effect. He has had almost every drug under the pharmacological sun and we keep on trying new ones in the hope that they eventually work consistently enough to give us some sort of control.

He has had a number of EEG, MRI, 3T MRI, Video telemetry etc etc etc...........  A site of origin for the epilepsy has been found but there is another which cannot be identified. Surgery therefore is not an option. A Vagal Nerve Stimulator (VNS - pretty much a electrical brain activity pacemaker) is not an option as Stevie will be required to MRI in the future.

In the early days of Stevie's diagnosis and treatment, the standard of care he received was to our mind severely lacking. I cannot say more on here at the moment as this period is subject to legal action by ourselves. Even this is proving to be a struggle as it requires an independent Paediatric Neurologist to produce a report on this care. Due to the restrictions in Legal Aid recently introduced, there is an hourly rate stipulated for the production of the report. The hourly rate is not enough for the medical profession it seems. Our Solicitor continues to  try.

Now his consultant is Professor Mike Kerr, a specialist in Epilepsy with Learning Disabilities. We feel we are getting the support from the Prof and the specialist nurse Christine Hanson. We don't necessarily meet eye to eye or even agree all the time, but at least we feel there is someone who is trying. We will ALL continue to try to get the best and most upto date treatment for Stevie. Unfortunately this may mean we have to go abroad. Hopefully not but we shall see.

Stevie loves Formula 1. He loves all sport but motorsport is the prime one. This was obvious with his first word.

"Ford"

Seriously!! Mummy and Daddy never came close. The second word was "Ferrari".... We have taken him to the British Grand Prix twice, AND he managed to get a ride in a Lambourgini Gallardo on private land at 200mph!!!

 

Stevie and I also play rugby for Swansea Gladiators RFC, a mixed ability Rugby Union team. The most "inclusive" team I have ever found.Those like Stevie are treated exactly as anyone would be treated in any rugby team. Great fun. A picture of Stevie and I before a game below:-

 

 

 

Various other subjects will be introduced, expounded on, commented on etc. as this blog develops, but that will do for now so look out for the next instalment.

 

 

 

 

The Barnes Family at a friends wedding recently. Keep reading!