Wednesday, 17 May 2017

And Now...A Seizure

On Sunday night, we put Adam to bed as normal - the picture of health.  Admittedly he was in my bed as "Mummy's Wooom" is the current favourite place, but he was fine.  Normally we have a video baby monitor trained on him but only when he's in his own bed.  An hour later, I walked upstairs to find him lying in a pool of vomit in my bed, completely silent and looking dazed.  Calling Chris, I swung into action.

I thought Adam had simply been so deeply asleep that it was taking him a few moments to wake up so I encouraged him to stumble to the shower but as I was washing him, I noticed that he wasn't making a sound - not a cry, not a murmur of distress, nothing other than "staring into the middle distance" silently.  I thought it was odd, but still assumed he was struggling to wake up.  Adam stumbled on being encouraged out of the shower and his little knees partially buckled before, with encouragement, he straightened and I wrapped him in his towel and walked him across to his room.

Lying him down on the change mat, he still wasn't making a sound and on looking at his face, I noticed his eyes were fixed on the ceiling, looking glazed and far away.  I started to become really worried and even more so when he began to be sick again, but still not making a sound or even focusing his eyes.  I rolled him onto his side into a close approximation of the Recovery Position and asked Chris if we should ring an ambulance.  

Then Adam started to make a couple of odd grunting sounds so I tried to talk to him, soothe him.  Then he simply curled up and fell asleep on the change mat.  We really didn't know what to do and whether it was an emergency or just a sleepy child with a tummy bug.  While we debated, Adam was sick once more and then "came back into the room" - his eyes focused and he began to cry.  Our relief was palpable as it was a normal reaction for the circumstances.

We sat on the floor with him, cleaned him up and soothed him and then, just like that, Adam stood up, climbed into his own bed wearing just his nappy and fell asleep.  We were completely non-plussed and just didn't know what to do - we didn't think we could call an ambulance to say our son had vomited and then fallen asleep, but it also didn't seem 'right'.  I sat there in his bed for over an hour, with my hand on his back but he was breathing normally and seemingly fast asleep so eventually we went to bed.

Adam slept for five hours and woke up just after 5am, seemingly absolutely fine.  We kept him off school because of the vomiting but there was no repeat and he had a normal appetite.  I was confused but again, didn't think I could really ring the GP to say, "Our son was sick last night, but he's fine now - what would you suggest?"  So I asked a friend, our former health visitor and long-serving hospital nurse, what she thought.  

I was absolutely stunned when she suggested it might have been a seizure.  Stunned.  Horrified.  Kicking myself for not just reacting and ringing an ambulance and suddenly terrified. 

When Adam was in neonatal intensive care as a baby, he had hundreds of seizures - it was a symptom of his Group b Strep Meningitis.  We were always warned that he could have seizures in the future but having never seen anything like one, I have long since stopped worrying about it - let's face it, we have enough other worries to deal with!  

But, as Wendy accurately and kindly pointed out, we deal with extreme situations every single day and we have an awful lot more to cope with than many other parents.  That means that we normalise what is not normal because it's our daily reality and it's a way of coping as the primary carers of a profoundly disabled little boy.  The good side of this is that it keeps us functioning, but the downside is that we sometimes lose sight of when we actually need additional medical advice or care.  

I think that's what happened on Sunday night - instead of panicking as many would, we kicked into coping mode; we second-guessed ourselves and analysed whether or not we really needed medical advice or whether this was just another facet of caring for our complicated little boy.  We made the wrong decision.  We should have called an ambulance.  We didn't.  Thankfully, when it was over, Adam was asleep and he was fine - but that's not the point.

On our friend's advice, I rang our GP and described in detail what had happened.  He agreed that it was a seizure and talked me through the next steps.  The doctor said we could start preventative medication just in case it was epilepsy but for one seizure, that wasn't appropriate.  

We could choose to request tests attempting to confirm whether it is epilepsy or *just* a seizure - something that can apparently occur in children when they're too hot or ill.  The problem is that testing would require Adam to wear electrodes on his head and then sleep through the night.  For an autistic child who cannot communicate effectively, cannot understand directions or explanations, this simply will not happen, and the GP understands that as he has an autistic son of his own.  

We could therefore consider sedation to perform the test but this comes with a whole extra set of risks because Adam is at risk of Malignant Hyperthermia so anaesthetic carries fatal risk - these days, measures can be taken that are exceedingly likely to prevent this reaction, but no medical procedure is ever without risk.  So if we want to proceed, we would have to decide whether or not it's a risk we're willing to take - would the possibility of seeing seizure activity in his brain be worth the risk of an MH reaction?  

The doctor decided that, at this stage, it probably wouldn't be worth either the difficulties or the risks of testing - not for one seizure.  He also said that with Adam's history of neonatal brain injury, seizures are understandable even a long time after the original illness. He left me saying that our only realistic option is to watch and to wait - if it takes another five years for a seizure to occur, then in medical terms, Adam is doing well and if another one recurs sooner, then we ring the doctor and he takes it from there.

I thanked him, exchanged pleasantries, put down the phone

...and fell apart.  

As a result of preventable Group b Strep Meningitis, our son is already Hearing Impaired, Visually Impaired, Autistic, Developmentally Delayed, Asthmatic and now possibly either epileptic or just having seizures from time to time.  There simply are no words to convey how we feel right now, only realistically, tears.

Lord, have mercy.

Wednesday, 10 May 2017

SEND Tribunal

So, tomorrow we go to tribunal, Special Educational Needs Disputes Tribunal to be more specific.  What began three years ago with a dispute with the Local Authority over how to transport Adam to school (in a carseat or not) has long since morphed into fighting over his EHCP (Education Health & Care Plan), what will be in it and how the contents of this will impact on his educational provision.  

It has been a long battle to get to this point and, regardless of the outcome tomorrow, both Chris and I are immensely grateful to the team at SEN Legal, who specialise in fighting for the rights of children with additional needs.  It is also an incredibly stressful process so we would be grateful for your thoughts and prayers to go with us.

Those of you who listen to Free Radio (Wolverhampton and Birmingham stations) will now also know that we have taken the incredibly difficult and painful decision to also pursue legal action over the circumstances of Adam's birth and how quickly he received the intensive care that he ultimately needed.  

This decision was taken two years ago but cases like these take a very long time to investigate and typically many years to come to a conclusion.  But with the recent national news that Shrewsbury and Telford Hospitals are the subject of a government ordered investigation into their maternity care for preventable deaths and birth injury, we agreed to our solicitor's request to allow our decision to be made public.  If you wish to read the press release on this, you can do so here:  Irwin Mitchell Solicitors

Our motivation always has been, and remains, doing everything we possibly can to meet Adam's lifelong needs and providing the care, therapy and education he will need in the years to come.  

Your thoughts and prayers for us all on this very difficult road would be very much appreciated.  Thank you