Friday, 22 February 2013

When you are Feeling Small

Before Little J, my life worked to very simple rules.  The more work I put in, the more I achieved.  If I stayed that extra hour at the office, or put in an extra session at the gym, I would do better, get fitter, aim higher.  Life with an undiagnosed child is very different - those rules don't apply.  You see, just like work, we have objectives. Lots of objectives. They are written out on sheets of paper in files sat in Physiotherapists’ and Occupational Therapist’s offices.  I can reel them off with ease.  That’s because they have never changed and we are yet to hit a single one.

It’s not from lack of work (for the most part).  We have done the routines and made the time sacrifices that this demands. Last year I became determined in our approach.  Ticking off physio exercises from my daily list, trying to mask my fears behind a packed schedule of 'intervention.'   We were inching gradually forwards, getting within striking distance.   Then, in December we experienced the word that breaks parents hearts and makes neurologists raise their eyebrows with added concern – regression.  You see, this job doesn’t follow the rules of put in, get out.  We don’t always move in one direction.  We still have to keep putting in the work, to not do it would be a dangerous resignation.  But there are no guarantees that we will eventually meet our goals.  No matter how hard we work, no one is going to sit Little J and me down for an appraisal, give us a big pat on the back and a pay rise. 

This is life as a carer.
Now I don’t mean to make it sound doom filled.  I have some amazing job perks – spending all day with my gorgeous boy being the main one (as well as a work environment that includes a stocked fridge, a mini workmate who thinks my random singing is hilarious and the ability to relinquish my work duties to Mr Tumble every now and then.)  But this job comes with big responsibilities.  I am always stunned and humbled when I speak to other parents of special needs children, many of whom face challenges that we can only imagine.  We are incredibly lucky that Little J does not have daily problems with feeding or oxygen levels.  This is not the case for everyone.  Some parents need to know about NG tubes, NJ tubes, gastrostomies, tracheostomies. Many will have been given little reason to be hopeful by doctors, but they keep going. I rarely fail to be impressed by the knowledge, dedication and infectious positivity of these parents.  They won’t ever get an appraisal or a pay rise – but they deserve a rating of outstanding.

This is why I am often surprised by the response of certain medical professionals to carers.  I have been asked on countless occasions if I am from a medical background simply from reciting Little J’s symptoms.  These professionals seem inexplicably surprised that I know what these symptoms are called, that I have researched the conditions that he is being tested for and that I possess – well, quite frankly, the ability to read.  Now this is by no means the case across the board.  We are extremely lucky that our lead Consultant is fantastic.  She fully expects us to read through her letters and to come to appointments with relevant questions.  But this has not been our experience with everyone. 
Recently, we attended our local A&E, having moved from London to the countryside a few months ago.  This was our first visit to this small regional hospital and my first realisation that not all hospitals come equip with a Costa Coffee and a gift shop.  So, after two hunger filled hours in the waiting room trying to stop Little J from licking all available germ exposed surfaces, we saw the doctor.  Now I admit that our reason for being there was pretty minor.  In a child with no additional needs, it would just have been a ‘watch and see how they are’ situation.  NHS Direct at the most. However, we have learned the hard way with Little J that it is always better to be safe and on a Sunday afternoon, A&E was the only option. 

So we sat down with the doctor, our enormous A4 file of hospital letters in my hand and began to explain about his background.  I had only got as far as dystonia when he interjected, ‘well, you certainly know all the language.  How do you know all this?’ 
I appreciate where he was coming from – I mean not many people have cause to pronounce paroxysmal on a regular basis.  But when symptoms have tortured your child for over a year, they are burned into your consciousness.  I don’t really know what else you would expect from the primary carer of a child with this condition?  For them to show up and say ‘well, you know, he’s got these spasmy things.’  From the carers I have met, I can’t think of a single one who does not know their child’s symptoms inside out. 

So, we explained why we were there and he looked less than impressed.  Then came the question.  I knew it was coming, the signs were all there.  The slight lean forward, the semi-sympathetic tilt of the head.  He asked the question that plagues parents with no diagnosis in the early days of their journey.  The days when they are desperately trying to convince doctors that SOMETHING is wrong. 
'Is this your first child?’

For anyone who hasn’t been asked this by a doctor, it comes with a subtext.  Yes, sometimes it is a query about genetics, but often, it means something else entirely.  It means you are overreacting. It means you have no concept of what is 'normal' in a child this age and you are panicking with no just cause.  It means you are paranoid, over anxious, and who knows, maybe even borderline insane.  It means that you should go home, put your healthy child to bed, enjoy your evening and perhaps google some mental health professionals.  In fact you should do anything at all, just get out of my A&E!
The doctor went on to tell us how if it was his first child he was sure he would feel worried about ‘every little thing’ as well.  I wanted to tell him that seeing your child stop breathing on more than one occasion is more of a paranoia motivator that birth right – but I resisted.  So we went home, irrelevant leaflet about childhood illness in our hands and tail between our legs. Now he really was a lovely doctor and not at all unpleasant.  But I can only assume he hasn’t come across many carers of children with complex conditions.  He therefore doesn’t appreciate the terrifying experiences that often come with this, or the sheer volume of knowledge needed to counter these experiences.
You see, I am not a medical professional.  I don’t know much.  But as the parent of an undiagnosed child with complex needs, there are things that I do know.  I know them because I have no choice. 
I know that at some point today my little boy will scream in pain and I will need to manipulate his muscles in just the right way to soothe it.  I know that as his carer, responsibility for his daily therapies and therefore his long term development rests squarely on my shoulders.  I know that as a child with an unknown condition who has had neurological episodes, it is likely that more seizures will be part of his future.  I know that if he does have a seizure, it is likely to be at home this time, not in a hospital cot.  I know that I cannot react like the first time. I cannot scream, cry and run to the nearest nurse.  I know that I must stay calm, note the time that the seizure started and call an ambulance. I know that if the worst happens and he stops breathing, I will need to remember what I was taught on a frighteningly small plastic dummy in the middle of the hospital ward.  I know that I will need to push past my fear of performing chest compressions on something so fragile and precious.  I know that when we get to hospital there will be no time to read through his volumes of notes.  I know that I will need to recite his symptoms, medications, doses and allergies concisely and accurately. 

These are the things that I know.
In comparison to the families who are further on in this complex journey, I know very little indeed.  I am just scratching the surface.  As time moves on I will need to learn about schooling, statmenting, perhaps even house adaptations.  I will need more specialist knowledge in this job than any I have ever had before.
So if any of those families are having a moment of feeling small, stand tall and take a bow.  Because whatever else is going on, you are my mentors, my inspiration and you have my eternal respect.

Sunday, 17 February 2013

Why Blog?

It’s a cliché, but life with an undiagnosed child is a rollercoaster.  There are crashing lows in hospital beds, soaring highs when a developmental stage is reached and then the plateaus where very little happens.  You just carry on.  Throughout all of this, something that has been a constant source of support and information is the experiences of other families. Over the last year I have read many blogs, all packed with useful advice and subtle observations.  These blogs are not just a support, they also help to raise awareness of the thousands of families who live every day not knowing what their child’s future will be. 

Since it became clear that our son - let’s call him Little J - would be classified as ‘undiagnosed’, I sought out the charity SWAN UK (Syndromes Without a Name).  It was here that I found many of these blogs and here that I learned a shocking statistic. It is estimated that around 40% of disabled children in this country have no diagnosis.   That equates to 6000 children each year who will be born with additional needs that the doctors simply cannot explain.  6000 families who will wonder if their child will ever walk, talk, or in some cases, even make it to their first birthday.  It turned out that our situation was not that uncommon after all.  I had really had no idea.

Behind every statistics are thousands of diverse stories and the blogs I have read share these so eloquently.  They help to give a voice to children who do not have one.  They help to offer a window into the world of the mum in the street, battling to get a wheelchair through an undersized shop door.  They help to show the child beneath the equipment, appointments and medical labels.  One of the most humbling moments of my life came at a special needs group.  We went around the room introducing our children and letting the group know a little about them.  We all reverted to our usual speech.  (That’s the one that we recite in A&E.)  A list of symptoms, missed developmental milestones and all too familiar medical jargon.  Last to take his turn was a father whose three year old son had a range of complex needs.  But when asked to describe him, he answered with just one very simple, very poignant sentence, ‘He is beautiful.’

Now I appreciate that in order to raise awareness my blog would need to actually be read by someone, a fairly unlikely occurrence beyond those who have no choice (ie my husband).  However, one of the biggest driving factors in starting to blog was our experiences with Little J’s rarest symptom.  At only seven months old he began to experience intermittent bouts of generalised dystonia.  These are incredibly painful full body muscle spasms and he was having up to 20 per day, each lasting around two minutes.  Two minutes may not sound like long, but when your baby is contorted in agony, shaking, unable to let out a scream due to the intensity of the pain; it is an eternity.  The doctors could not offer any pain relief – the spasms were too sporadic and without knowing the main cause, medication was a shot in the dark. 

So I decided to try and find another family who had experienced this in a baby.  Perhaps they could give me advice on ways to help his pain? Perhaps they would be able to tell us about a medication that worked and give us some hope?  I searched everywhere.  I posted on special needs websites, dystonia forums and tried endless google searches.  The closest I found was a lovely family whose daughter had a different type of spasm that had started at a later age.  But I couldn’t find anyone who had experienced this in a child so young.  It was eight months before a medication was found to help Little J’s dystonia.  I am now pleased to say that the spasms are 90% gone and that we have found ways to ease the pain when they do occur.  We have no idea where we are headed with Little J’s health, but whatever happens, we are eternally grateful that he no longer suffers this.  So, even if only two people ever read this blog (one being my husband under duress), it will be worth it.  Because you never know, there might just be someone sat next to a hospital cot doing the exact same searches that I did.  Maybe the right combination of key words will drag this from the ether of the internet and give them that bit of hope. 
So, one year after Little J’s symptoms began, I am finally joining the blogging community.  I am joining in to share our experiences and hopefully let another family know that they are not alone.  But first and foremost, I am blogging to tell the story of our little boy, because he truly is, any always will be, beautiful.