Both of my children are thankfully fighting fit and healthy, but there have been times in both their lives where they have been very unwell.
I wanted to write about my experiences of complex febrile convulsions. When my son was unwell, I went online to see if there was anyone else who went through what I did, and apart from the odd comment on Facebook or forums, there wasn’t huge amounts of information. I just wanted to be able to relate to someone else’s experience.
Here is the first story.
I remember the date. 27th October 2012. It started like any ordinary day, albeit an exciting day, my first wedding dress fitting. My mum came along with my son in tow along with my two bridesmaids.
My son was a bit cranky, I had put it down to him having a bit of a sniffle and the fact that he was a 2-year-old boy, they can be cranky!
We finished at the bridal shop and everyone went home. I decided to go back to my mums house with my son so she could help me entertain him.
It got to about 4.30pm, he was sitting on my mums lap whilst I was in the kitchen.
“Lucy, he feels very hot!” My mum called out. I got some Calpol out of the cupboard and gave it to him. He was very hot indeed and we took his t-shirt off to cool him down.
About 5 minutes later my mum still had him on her lap and my son all of a sudden had a fixed stare on his face and he started shaking and foaming at the mouth.
“Lucy, LUCY!!! he’s having a fit! Call an ambulance!”
My heart was in my mouth. He was totally out of it. I didn’t know what was happening, I called 999 and hysterically told the operator where we were. By this time we had put my son on the floor. He had blood coming out of the side of his mouth and he was violently shaking (we later found out this was because he had bitten through his tongue) and I quite honestly thought that he was going to die.
After what felt like an eternity, the ambulance arrived. They took one look at him and one of the paramedics cut his clothes off wired him up and rushed him out to the ambulance.
“We need to get him to the hospital right now, Mum, you need to come in the ambulance with him” the paramedic said to me. Without hesitation I jumped into the back of the ambulance and watched while the paramedics did everything they could.
“Talk to him, Mum, he can hear you, he will know you are there”
I didn’t know what to say, I just started singing to him. His pupils had blown and his stare was fixed onto me. I couldn’t look anymore. For the journey to the hospital I shut my eyes and held my ears. At this point I was thinking the worst, he wasn’t going to make it.
When we arrived they ran him into the A & E department and were met by a huge medical team. I was like a statue, in shock by the whole situation. I got out of the ambulance and I genuinely didn’t know what to do. I froze and just stood there. After about 5 minutes a nurse came in and took me into a side room and sat with me and held my hand. I couldn’t find any words to say.
Mr. S was playing in a lacrosse match miles away and had no idea about what had gone on. His phone was off too.
A doctor then came in to see me. “We aren’t sure what is going on at the moment, he is still fitting and we are giving him more drugs to try to bring him out of it, once the fit is under control we need to scan his brain. He isn’t breathing on his own at the moment either.”
By this time he had been fitting for about 35 minutes. My mum arrived at the hospital and she sat with me. We didn’t even look at each other, let alone talk.
I wanted this to all be a dream.
Finally Mr. S dashed in with his mum who had picked him up and driven him here once she had heard from my mum what had happened.
Mr. S copes with this sort of thing a lot better than I do, you see, he is a nurse so has a better understanding of things. He went in to see our son, and took me in to see him too. It was awful. He was intubated, but had thankfully come out of the fit.
“We need to see if Great Ormond Street or Addenbrokes have a bed. Chances are following the scan he may need to be treated in a children’s intensive care unit.”
We could see that the doctors believed it was a lot more serious than they first thought.
Hours passed, he was still intubated, and they took him for a scan.
I couldn’t sit still. I got up and paced aimlessly round the hospital. What would they find on the scan, would he ever wake up?
After what seemed like an eternity, a doctor called us in to talk to us.
“He’s a very lucky boy, his scan is clear, we think that this has been a very severe complex febrile convulsion, we are going to try to wake him up now.”
I remember bursting into tears. I could have kissed the doctor there and then. I went up to my son and held his hand.
“He will probably sleep this off well into tomorrow, he’s going to be very groggy.”
We sat with him and watched as he started to finally wake up. The doctor asked him some questions, what’s your name, where is mummy, how old are you; that kind of thing. He answered! I had never been so relieved.
He was transferred onto the children’s ward, and after being so so poorly just hours before, he surprised all the staff on the ward and was standing up in the cotbed at 4.30am singing songs about Mr. Tumble. I didn’t mind, he could have woken up every single person on that ward for all I cared, my boy was going to be alright!
After just one night, we took him home.
I hope someone out there can take comfort in reading this and know that other people have been through it too.
Even to this day the fear of it happening again stays with me. The minute either of my children have the slightest sniffle or temperature I can’t cope. I’m there with the Calpol and thermometer and I ring Mr. S to see if he can come home from work to help, or get my mum to come over to us so someone can be with me. I look at it rationally though and I think don’t be so ridiculous! But the thought of experiencing it ever again absolutely terrifies me.
History did repeat itself for our family. A couple of years later my daughter had one too, and I will write about that soon…