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.

 







 

2 comments:

  1. I loved reading this blog. You are so right. Sharing information helps us support each other with knowledge and kinship. I didn't know those statistics. From Cinz.

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  2. Thank you so much Cindy for your lovely comment. Other people sharing information and advice has been such a help to us along the way. I am so thankful for the internet - can't imagine what it would have been like before!

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