I’ve been a bit quiet on Instagram over the couple of weeks.. it’s been pretty intense and worrying time for us.
A couple of weeks ago my nightmare became a reality again when Amelia had another two seizures. The first time she had one still haunts me and two months later we were still living in fear of it happening again. This time however Steve was at work and we were at a friend’s having a lovely playdate. I recognised the signs and managed to pick her up as she went into one so she didn’t fall and injure herself. Thankfully my friends all jumped into action and called the ambulance, put Amelia into the recovery position while I sobbed holding my baby girls face. That pale deathly grey face that I had seen in my nightmares was back staring me straight in the face and it took my breath away. This seizure was longer than the first and felt more intense. It felt like an age before she came around and hours before an ambulance arrived but in reality the ambulance arrived very quickly. She was confused, sleepy, disorientated and very sad when she came around just like last time and all I could do was hold her tight and tell her that she was okay. Thankfully all her vitals were ok bar her blood sugars which were a bit on the low side – apparently all normal after suffering a seizure. The paramedics were amazing and wanted to get Amelia checked over at the closest hospital East Surrey. Amelia found the ambulance fascinating but on route to the hospital she had an ‘absent seizure’. Albeit very short it broke my already broken heart into more pieces and I am so glad that the paramedic was there while it happened. I can’t fault the paramedics or the A&E doctors at the paedatric A&E department who quickly started to run tests on Amelia to check all was okay. Although Amelia was super sleepy at this point she was so good at letting all the clever doctors do their tests. Thankfully her ECG and bloods came back clear and finally we had some possible answers for why this was happening. A couple of days later at a consultant appointment we had an official diagnosis – Reflex Anoxic Seizures. It took a couple of days like last time for her to return back to her normal self, like nothing had ever happened. I however was absolute anxious mess suffering with nightmares again. Steve had to go away with work a couple of days after her seizure and this felt like a ton of pressure on me to keep our daughter alive. I couldn’t leave her on her own which meant I spent a good week trying to sleep on the bedroom floor next to her cot. A couple of days after her seizure she picked up a sickness bug which she loving passed on to me and then to top it off the poor babe got an ear infection. It was the final straw and it tipped me over the edge. I was a broken mess. All this was happening whilst I was trying to work a 30 hour week and solo parent whilst Steve was away. I shut away.. away from the world and when Steve got home all I could do was cry. I’m still getting my head around Amelia’s diagnosis but I what I do know is there is very little awarenesses for RAS or support for after diagnosis. Amelia’s consultant praised the young A&E doctor for spotting all the signs for RAS and not epilepsy!
I intend to use what ever little platform I have on here to raise awareness so keep an eye out for a post on Reflex Anoxic Seizures very soon!
I would love to hear from anyone else who has a little one diagnosed with Reflex Anoxic Seizures so please do drop me a message!
Thank you for reading and a massive thank you to those that reached out to see if we were okay. Thankfully we have some amazing friends and family who all sent love, care packages and supported where they could.