When Tia was around 4 months old she started doing some unusual movements, we took her to hospital numerous times however we kept being told it was colic and reflux. Tia was eventually diagnosed with infantile spasms in January 2020, when she spent two weeks in hospital as she regressed with her development and was having lots of spasms. They started her on Vigabatrin this helped her for 24 hours and then the spasms came back. They then decided to try Epilim (sodium valproate) which made Tia “depressed” – she wouldn’t smile, she wouldn’t do anything and the spasms were still the same. They started weaning her off Epilim and swapped it for clobazam. In November 2020 I noticed Tia was doing different movements and was getting worse and worse, they started her on Topiramate. In January 2021 she had another EEG as she was admitted to hospital because she was having 7+ hours every single night of what I could describe as “an electric shock movement” – I did lots of research and found myoclonic seizures online. I always look back on this time of Tia’s journey and remember never sleeping (the myoclonics always happened at night, I’d be trying to settle her while recording minute by minute in Tia’s seizure diary what was going on for 7+ hours) I remember one particular night during this time thinking things will get better and I made a promise to Tia – that I will fight her corner every day until they did.
During this hospital stay she was diagnosed with severe complex epilepsy with global development delay. We were told the doctors don’t know what Tia’s future would be and how her quality of life would be. They said her EEG was so messy they couldn’t pinpoint what types of seizures she was having and told me to get as many videos as possible and keep recording things.
The seizures were still out of control and I’d read up about the ketogenic diet … I did so much research and was amazed that a diet could help with seizures! I asked Tia’s consultant about the diet and they agreed to put her forward to try it. Around the end of summer I got an appointment with the ketogenic dietitian and was so happy!! We had a few appointments and started the first step of swapping some foods to keto friendly foods. Tia was getting really bad with her seizures and it looked like her spasms had come back. I remember ringing her epilepsy nurse and told her we cant go on like this any longer. I had reached my breaking point and so had Tia. Within 3 hours Tia’s consultant had asked us to come to hospital to be admitted. A few days later we were told we were going to be moved to a bigger hospital to start the keto diet. In hospital we could go fully keto rather than be weaned on gradually. I was so nervous as I knew this was Tia’s last proper chance until she was older. She had another EEG which was the exact same as before – so chaotic they couldn’t read it.
We ended up doing a 6 week stay in the hospital. We noticed around an 70% reduction in her seizures by the time we left. I was over the moon! 17th December 2021 was the last day that Tia had a recorded seizure. She was still having some other movements which I was struggling to describe (they didn’t look like seizures or her spasms) so I sent lots of videos over and Tia’s neurologist and consultant said it looks like dystonia but they aren’t 100% certain from the video evidence. On New Years Eve 2021 Tia became really poorly and got admitted to hospital via an ambulance. Everyone saw the movements and also said they thought it was dystonia. I kept saying to people that “this is the only movements she’s been having .. was she seizure free??? She had lots of tests while in hospital including lots of bloods, swabs, MRI, EEG, lumbar puncture etc … On the 10th January 2022 we were given Tia’s EEG results… “no seizure activity seen” I asked the doctor to repeat what she had just said as I couldn’t believe what she was saying. She said the movements are dystonia. Tia isn’t out of the woods yet but no one ever thought Tia would ever be told “no seizures seen”.
There have been 2 groups that have really helped me along Tia’s journey.. the first one was UK Infantile Spasms Trust (UKIST) throughout Tia’s early stages of her diagnosis I was always posting in this group for advice. Secondly The Daisy Garland – a charity that help children on the ketogenic diet and have really helped with all my keto questions and have made things a little easier transitioning onto the diet with their keto box.
I’ve learnt a big lesson with Tia… and that is even when you think there’s no light at the end of the tunnel and you feel like you are drowning… never give up!