kerrs febrile seizures
As a mum, your instinct is to protect your baby. When they hurt you hurt, when they are unwell you wish you could take it away from them. The worst feeling in the world is knowing you can’t help them. You feel useless.
It was the 19th of December, Alba was 2 days old, Kerr 16 months. We were so excited to have spent the first night at home and wake up as a family of 4. It was a tough night, as most nights with a newborn are but Kerr didn’t show any signs of being unwell. Callum took him to the shop to get some bits we needed and I remember taking a picture of him when he got back because he wouldn’t let go of spices that Callum had bought from Tesco. He was just being the same wee boy. I put him down for a nap as usual and sat on the couch with my newborn baby.
It was approaching 2 hours that Kerr had been sleeping. This was his routine and therefore was not unusual. I kept the baby monitor right next to me and looked at it when I heard some shuffling and groaning. He was lying on his back, stretched and flipped onto his tummy. I watched him like I usual do and before I knew it he was seizing.
I screamed for Callum whilst trying to get off the couch holding Alba 2 days post section. I was continually screaming for Callum, who was just in the kitchen. As I made it the the stairs Callum came running out asking me what was wrong. I told him kerr was having a seizure and he bolted up the stairs. I’ll never forget the feeling of not being able to breathe when I entered his room. Callum had picked him up and he was seizing in his arms.
Kerrs head was turned to the side, his eyes were continually rolling to the back of his head, his arms and legs were bent and violently jolting, his mouth was making a clicking noise and he was foaming at his mouth.
I put Alba in Kerrs cot, took kerr off Callum and began to strip him. It must have been instinct because I’ve never had any friends or family who have experienced a febrile seizure before. I didn’t even know at that moment that’s what it was. Whilst stripping Kerr I told Callum to phone an ambulance.
The ambulance phone call was extremely stressful. The told me that it was would be 4 hours before anyone could reach us and I should drive myself. There was very little support on the first phone call and they eventually hung up as I agreed to driving us up, forgetting I was 2 days post section. I picked kerr up and we heading downstairs ready to drive to the hospital.
Kerrs body had stopping jolting at this point but his head and eyes were still fixed and he was making strange noises. We phoned 999 again and were listened to an amazing helpful person. She talked me through everything and tried to keep us calm. Kerr stopped seizing after 3.5 minutes. The longest 3.5 minutes of my life. After he stopped seizing he was unconscious and his breathing was quick and shallow. For 5 seconds he stopped breathing and his whole body went limp. Callum and I screamed in terror and by the time I got him onto the floor from the couch to do CPR he breathed again. His breathing returned to normal and his eyes opened. It was almost like his body reset in that moment.
After this happened Ambulance control said she was sending a first responder as the ambulance assigned to us was coming from livingstone and was still 30 minutes away.
He was still very out of it until a first responder arrived, 25 minutes after he started seizing. The man was like a gift from god. He was incredible. The first thing he done was checked Kerrs temperature which was 41.C. Bare in mind this was 25 minutes later and he was we stripped down to his nappy. He diagnosed Kerr with a febrile seizure. He was monitored and asked us to sort calpol for him, open all windows and doors and get ice packs and fans. It was the 19th of December so the house cooled down very quickly. We cooled kerr and wrapped up our tiny newborn.
He was concerned at how drousy Kerr was as he had t managed to sit him up or open his eyes for anymore than a couple of seconds at this point. He said that it might just take time as it was his first seizure. Kerr slowly began to come round but the first responder said he was also having absent seizures too. Something again I’d never heard of. He would stare into space with no response when we spoke to him, poked him or made noise.
One thing that did happen was Kerr had diahorrea. He had lost all control during his seizure which apparently is very common.
It was just a waiting game for the paramedics to come as we had to attend hospital.
I travelled in the ambulance with Kerr as Callum would have to pick us up to bring us home. Remember this was the tail end of Covid and only one parent could go with Kerr. He was diagnosed with bi lateral ear infections, monitored for a few hours and allowed home. It’s fair to say I’ve never had a proper nights sleep since.
Fast forward to 5 months later and kerr woke up at 10pm hysterical. He was so warm and was pulling at his neck and breathing really quickly. He was rigouring because of his temperature so we brought him downstairs and gave him calpol. He was really lethargic and not himself so we decided to phone out of hours. This was a long drawn out process and it involved me waiting on a phone call back 3 hours later. In hindsight I wish I had just taken him straight to A&E. we were told to attend out of hours in Hamilton and when I arrived with Kerr (Callum had to stay at home with Alba), I knew I should have trusted my gut. It was so busy, full of unwell babies and children. After sitting for 45 minutes we were taken into a triage room where Kerrs temperature was found to be 39.2C. He has been stripped to his nappy since we got out the car and I just knew in my gut that he couldn’t sustain this level of temperature for much longer. We waited and waited without getting seen and before I knew it Kerr was seizing in my arms. It was a scramble to find nurses and a doctor to help me as they were all busy with other kids. I started screaming and people came running. Kerr fitted for a total of 4.5 minutes. I was screaming at them to give him medication to help it stop but it was so chaotic. No one really took charge of the situation I ended up being sick watching the whole situation. Luckily one thing that had happened was an ambulance had been phoned. They arrived within 10 minutes and took over Kerrs condition. They asked me what was wrong with him and I explained we hadn’t been seen yet because of the business of the ward. Kerrs heart rate and temperature were still very high but everything else seemed within normal limits. Again, he was so sleepy, letheragic and quiet. Unusual for my wild toddler.
We were transferred to wishaw general and were greeted with the most amazing staff. They were so attentive and quickly diagnosed Kerr with tonsillitis. He was monitored until the morning and was let home with antibiotics.
Febrile seizures are deemed as “normal”, but nothing can prepare you for seeing your child so incredible unwell, vulnerable and helpless. I’ve had far too many sleepless nights and had ridiculous anxiety the second Kerr is feeling unwell. I have done an insane amount of reading, research and spoke to different health professionals to try and help me be more prepared and helpful if they were to happen again but also to help me comprehend why they happen and why to my little boy.
Below are a few tips that helped me:
1. They are unpreventable. No amount of calpol or ibuprofen will prevent them from happening but they will help your baby feel a bit better.
2. When your child is unwell their temperature will spike through the night due to higher cortisol levels in their body. Don’t wake them to give them calpol, let their body use the temperature as an infection fighter response.
3. If you know your child has a temperature don’t check it constantly! I became temperature obsessed when in fact a febrile seizure can happen when it’s a any high level.
4. If your child has a febrile seizure, move them to a flat surface, strip them and phone for help.
5. They will be quite weak and lethargic after the seizure. Their limbs have been contracting and it might take them a couple of hours before they can lift their arms or walk unsupported.
6. For future vaccines let the vaccination nurse know about their history. Vaccinations can cause a spike in temperature and so it’s important that they know.
To the ambulance crews, A&E nurses, consultants and health care professionals who cared for us, I will never be able to thank you enough!