Friday 6 April 2012


When Nick was a baby, he was a terrible sleeper. He would doze off and suddenly, his arms would fling themselves outward, his legs extending and he would scream. We called this his 'startle' reflex and put it down to Nick being Nick. When he was tiny, we found it helped to keep him swaddled tightly, so that the jerks were contained.... I remember that at the cottage, we put a sign on the hallway door, "Quiet, Baby sleeping...lightly!" Any tiny sound would result in a startle and then a scream. It never occurred to any of us that his behaviour might actually be a seizure disorder.

Then, when Nick was about 7, he had his first orthopaedic surgery. It was a lengthening of his heel cords and adductor muscles. The doctor in London suggested casting him afterwards in a 'broomstick' style paster, with both legs open wide and a pole wedged in between to keep the position stable. His feet were cast as well, with his feet at 45 degrees in order to allow the heel cords to maintain their stretch. When Nicholas came home after that surgery, he began to have terrible symptoms, but only during sleep. He would be sleeping peacefully when, suddenly, his casted legs would jerk up into the air and he would scream terribly until we turned on the light and firmly woke him up. During the worst times, this would repeat itself every 3 to 5 minutes. Only during waking hours was he somehow free from these terrible episodes. Finally, Nick became so exhausted and ill that he was readmitted to hospital for telemetry tests. A camera was put on Nick and when the neurologist viewed it, she diagnosed frontal lobe seizures. The surgeon recommended removing the cast two weeks early. When the cast came off, pressure sores down to the bone were revealed on both his heels. Poor Nick, his heels looked like white jelly. We were transferred to Great Ormond St. Hospital and the overnight test was repeated, but no seizure activity was seen on the tracing. Everyone was mystified by the events and we were sent home to have daily nursing visits for almost a year in order to fully heal the pressure sores on Nick's feet.

Fast forward to this year. We now have a diagnosis of nocturnal seizures and we know that Nick's arm jerks during sleep are, in fact, seizure activity. Last night, the nurse reported 16 or more jerky movements AND Nick being disturbed by any small sound or movement.

Sometimes it takes a lifetime of staring at someone you love to understand what is happening to them, especially if that person is medically complex and non-speaking. I can't help but wonder how our lives would be different if we had known to medicate Nick's seizures when he was young. So much of what Jim and I battled was sleep deprivation.... I know that hindsight is 20/20 and that we did our best, but it is bittersweet to wonder.


Anonymous said...

Oh Donna, the 'what ifs' can drive you crazy if you let them!! 'What if" is the story of my life!! I have 2 sons who are non-verbal so know how much time/effort goes into trying to figure things out. Watching every little sign, keeping track, watching for a pattern to emerge, researching, on and on. Being too busy and sleep deprived can make us miss some but I have never known anyone with better developed observational skills than moms of a child who is non-verbal. Often though what we do figure out is ignored by professionals. Doctors and teachers are the worst!

Don't get me wrong, we have had some very helpful doctors over the years but there are likely more that have been anything but.

When Ben did not develop speech by 18 months the SLP referred him to an ENT. The first one we saw (who was subbing) determined he had fluid build up due to an undiagnosed/untreated ear infection. How did I miss that?? What kind of mom was I that my baby had an ear infection and I didn't know?? Only after years went by and much experience did we learn that Ben was completely capable of having an infection without a fever to give it away. And he was always so happy and content and a non-complainer. I know that now but oh the guilt of missing those infections!! He was to get tubes in and the regular ENT was back by then and he sat me down and told me that I was neurotic and putting too much pressure on Ben, he would talk when he was ready. There are days I still want to track him down and say, he's 24 yo old now, should I be concerned yet?

Eventually he was dxd as being hearing impaired and was to wear hearing aids. That was awful!! The audiologist had never seen a child react to them that way. But I was to continue to force him to wear them, he would adjust in time. The torture I put him through before saying no more. I knew it was not right and just couldn't do it to him any more. Turns out he had tactile sensitivity that is particularly bad around his head as well as hypersensitive hearing (not hearing loss!) so you can well imagine the pain I was inflicting (something that wasn't determined until much later). I was also seeing things that would indicate that the hearing tests were wrong, he was indeed hearing quite well some of the times. That bit of wisdom was shrugged off, that isn't what they could determine, I was imagining things. It eventually became clear to me, after much research on my part, that he had autism. I knew when he was 3, they finally accessed him at 4 and said no and why are you crazy enough to 'want' him to be autistic instead of hearing impaired?? They said no to autism but did dx a whole bunch of the individual symptoms including the tactile sensitivity. He was 7yo before I was finally able to get a correct dx.
So much for early intervention!

Then I was pretty sure he was having seizures (common to kids with autism and also ran in my family, my brother had them as a child so recognized what was going on). Nope, not seizures, just autism. Amazing just how many health concerns would not be investigated over the years - just autism.

It wasn't until a few years ago when he had 2 grand mal seizures (can't deny those ones!) in one day and was hospitalized that they finally dxd epilepsy and put him on medication.

The 'what ifs' are so many. So many times things could have been figured out sooner. So many times things could have been done differently. And that is just Ben (and only a few of the examples). Don't get me started on Kevin too!

We live, we learn, we do the best we can. In the end we also have to learn to let go of the 'what ifs' or risk loosing our sanity!


The Caregivers' Living Room said...

HI Laurie, Thank you for your comments and for sharing your own family experience. Your poor Ben and poor you, struggling to do the right thing for your precious boy! It reminds me of when I was told to use a behaviour modification programme for feeding Nick when he would not eat as an infant. Turned out to be really serious gastro problems. Boy, when I remember those's a wonder that my Nick loves his Mum! And he does. And I bet Ben loves you best too. xo

Anonymous said...

He does! We are lucky you and I. As hard as we are on ourselves sometimes, always wishing we knew more, could do more, I think our guys do understand that we are trying and that we love them. And he is my hero! He has been through so much, been treated so badly by a number of people over the years and yet he remains the eternal optimist.

He always seems to be smiling these days!

His seizures are controlled by the medication (thankfully!) and I am really hoping that Nick's will be too.