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Month: February 2018

The present, is a gift …

The present, is a gift …

No road is too hard

As a Dad and parent carer, there are many times when I let circumstances and the uncertain future of our son get the better of me and I lose focus on what is important.

Once essential planning has been put in place, I should worry less about the future, it hasn’t happened yet, and with life, there are many unknown twists and turns that will dictate how that future turns out. The past, well it has happened, it can’t be changed, so why spend time worrying about it. It would be fantastic to look back from time to time on memories that are packed with moments of fun and laughter. Those memories can only be created if we focus on the present. Why is it called the ‘Present’ …. because it’s a gift. A gift of life, that is yours to do make as exciting and wonderful as you can make it. Living every minute we are blessed with. I was reminded of this recently as we struggled with new information. That information was expected, but I had allowed all the uncertainties to rise to the surface instead of accepting a moment in time where information had to be acknowledged, had arrived.

I need to thank close friends who have always supported us, for reminding me of this.

We enjoy our wheel walking and there are some fabulous places that increasingly I have believed they are less accessible to our sons wheelchair than they should be. No more. I have found a wheelchair that has larger pneumatic tyres allowing more comfortable ‘off road’ usage. Adding to this, a marvellous invention from the USA called a “Freewheel” all terrain add on, this allows the smaller front casters to be raised off the ground on this single larger wheel and greater access can be gained.

So, no matter if the ground is cobbled or covered in snow (within reason), across fields and parks, or even along the shoreline on coastal walks, I thought were behind us, we are setting up a schedule to enable our son to experience more of the great outdoors and capture photographs of us picnicking … well everywhere.

I’ll update you on our journeys when the new chair and wheel has arrived, and thank you, for supporting us 🙂

 

Numb, with knowledge …

Numb, with knowledge …

We have been left numb with the knowledge we have learned today.

Through our sons neurologist review, it was agreed that his Epileptic seizures are resistant to anti-epileptic drugs (AED). We knew this, after trying many different types and combinations without reduction of the seizures, we could see the lack of effectiveness.

What we needed to understand was the impact on the brain of the ongoing seizures, and the long term effect. To our surprise, we learned there is very little certainty in this area, though it is believed that Cognitive problems can develop as a result. More so in children, but also in adults. “Most cognitive complaints in adult patients are mental slowness, memory difficulties and attention deficits. In children, cognitive problems are more diffuse, responsible for language troubles, learning difficulties, poor academic outcome, behaviour problems and finally unfortunate socio-professional prognosis” we are told.

Our son has been exposed to these seizures since he was around 2 or 3 and so fits this definition completely, both child and adult. In itself, it raises questions around his Autism diagnosis and are many of his challenges as much to do with a cognitive decline due to Epilepsy caused brain damage as much as Autism? This may explain for example why the coping mechanisms and interventions are difficult to maintain and may not be fully effective.

Assuming this is correct and we find we are unable to find a way to stop his seizures, a continual decline of his cognitive ability is expected. We also had it confirmed that our son does fall within that group who are subject to sudden and unexplained death in Epilepsy (SUDEP) usually as a consequence of having a seizure that he just doesn’t recover from. An area that is known, but there is still not much understanding of. Life expectancy is shortened considerably and both these points we knew and have been battling to accept.

As for what next. Our son is being referred to a specialist centre for reassessment and potential options for us to consider. As AED’s are not having the ideal effect, it was suggested to us that Vagus nerve stimulation therapy may be an option. To be frank, we are appalled. It sounds like the electric shock treatment physicians used to administer many years ago. I’m not altogether happy with the current success rates either. It may be after reassessment, this is discounted anyway, but we will need convincing if we have to consider putting our son through further surgery with such low success rates. It would appear that any benefit, if achieved at all, could take over two years to realise.

It may well be that we have to accept that through all his complex issues, a decline in health is inevitable and all we can do is to stimulate him where and when we can, but expect an increasing amount of time just making him comfortable and safe.

Today is not a good day and though we hide our tears from our son, he does pick up on our sadness and wonders why, asking is it something he has done!

We now need a sunny day to go on a wheel-walk and forget for a while 🙂

Realities of a life

Realities of a life

A couple of days before our sons neurologist review, we have high hopes that we will be able to discuss a solution that will see an end to his uncontrolled – or ‘Refractory’ seizures. The more we read and learn however, the more distressed we become and the search for that ultimate solution seems as far away now as it has been over the last 31 years.

It is suggested, that if the first two or three AED’s (or Anti Epileptic Drugs) do not control the seizures, then it is unlikely that any of them will.

We have tried a combination of over twelve different drugs, all without complete success and the one which offered the best, though not complete control, does now appear to be failing him too.

Alternate treatments are always suggested, diet (Ketogenic) though results are seen in children, not a 31 year old and only eases the symptoms in most cases, if at all. Vagus nerve stimulation, where implanted wires are connected to the Vagus nerve and an electrical impulse is passed into the Vagus nerve every 7 or 14 seconds which in turn stimulates the brain to avert the seizures. A swipe of battery over the implanted battery pack stimulates the Vagus nerve and may offset the part of the brain about to create the attack if you can sense one coming. We have met a person who has had this VNS and as our son has no warning signs, it would appear, even if it could be considered given he already has a shunt fitted, he would not get the benefit of triggering the stimulation in time to prevent one and would rely on the continual impulse being emitted into the nerve. There is also surgery, to remove part of the brain that is suffering from these attacks, again, not always successful and fraught with complications and further damage to the brain. And of course there is medication.

Our sons condition is complicated by the Autism he has struggled with all these years as well as a complex range of other conditions and as most AED’s have side affects of increased Anxiety and Depression, his already anxious mind goes into overdrive when taking medication, creating many physical symptoms but also serious terrors and hallucinations. Sadly he is now beginning to realise he is unwell and does get very down with it. We battle the reality that he is a likely candidate for SUDEP and the advice is to avoid this, seizure need to be controlled as fully as possible. If that cannot be achieved, short life expectancy and sudden death through a seizure is what the future holds.

It is a critical time and we do need to ask those direct questions of our sons Neurologist. What can be suggested to control these worsening seizures? What does the future look like for our son if they are not controlled? How long will he be able to live the life that God gave him? …. I have never been strong enough to ask these questions or listen to the answer without breaking down and I have nightmares myself wondering and worrying over what we can, or should do and how to support as fulfilling a life as possible for him.

Tomorrow we face these questions and look for any hope we can in what will be said.

 

 

10th February

10th February

I don’t know why I still get surprised when changes happen to our sons wellbeing and health so suddenly. One moment we are laughing and smiling as we wheel-walk through the snowy lanes, and then almost within hours, the veil of depression and anxiety take a grip of him once more.

Over the coming days, reviews and assessments will take place again. We know his health is failing and that lasting damage is being caused as a result of his daily seizures. In turn, they are adding to his enormous anxiety and for us, it breaks our hearts to hear him say such things as “I’ve had enough of this” and “I can’t go on anymore” We understand that a person who suffers from Autism, can and does, sensationalise expressions as they talk and we are assured that what he is saying does not actually mean the desperate things we may believe they do and in truth, within minutes, his expressions and language can change, giving some support to these assurances.

Though I write these words, they are from a parents perspective of their only child, but we do recognise that we are just onlookers to the real torment that is being suffered by our son. We need to make sure we don’t feel sorry for ourselves, or him, but to continually keep focused and positive, also hopeful that something will be considered that will ease his burden. That does become hard at times. Soon however, we will get a view of what may be considered, though in reality, it will take several months to appraise the benefit or otherwise of whatever considered intervention is decided upon.

9th February

9th February

Winter walking

Yesterday saw the sun shine on us. Still bitterly cold, but we decided we would venture out for a short wheel-walk.

Blessed with living on the doorstep of open countryside, we were able to walk out of the front door and across the road to a lane that takes us into a nearby hamlet.

Fresh air in our lungs, and with our dog, Lady Bronte, along for the exercise we passed, Sheep, Horses and some walkers who were eager to chat. Our son spends so much time indoors, to take this opportunity to see something different and to create some new memories was a real treat. To meet up with people who were willing to stop with us and chat a short while also help our son experience some positive interaction too.

Though far from easy, pushing a wheelchair up the hills to get to the top, it was worth the effort and the views were magnificent with snow capped hills and moorland. The journey down was much easier and arriving home, we shared a pre-made flask of tea and set about putting the photographs together in our sons book of memories, which has a focus on ‘happy’ times.

Not all days are as successful, but this day, was a jewel 🙂

1st February

1st February

Today we dusted. When we reached our sons room, he became agitated. Initially because of the noise from the vacuum cleaner and smell of the polish and then from our moving some items, he spent 37 minutes repositioning them back into place. Never leaving the task until it was completed to his satisfaction.

Another trait of Autism can be the absolute need for things to be done in a certain way, or things positioned in exactly the right place. In this case, the hand controls for our sons TV and CD player have to be lined up exactly ‘right’ – as we moved them while dusting, he would not leave his room until they were exactly back in place.

We have learned to understand this and realise that no matter how much we encourage him to leave them or allow them to be randomly placed, it doesn’t work and we have to allow him time to complete the task. Even something like switching off the TV, for us would be the flick of a switch and then we move on. In the world of those with Autism, that simple act can be like our leaving the house with the door left wide open. It has to be switched off, then switched back on to make sure the switching off can be done again and checked, not once, but probably 14 – 15 times or more until his mind processes the fact it has been done.

There is a process of preparing him for the movement of things like the hand controls. It takes days of explaining that we will put them in a different position. Showing him, allowing him to put them back the way they were and repeating this time and time again so he gets used to it. On the day we achieve the move, that then becomes the norm and in this position the same repetitive process starts anew. “Random” is something that cannot be comprehended in his mind, nor accepted and so we support his need to be precise until in his mind, it is safe to move away.