BiographyWhen Tia was around 4 months old she started doing some unusual movements. We took her to hospital numerous times however, we kept getting told it was colic and reflux. Tia eventually got diagnosed with infantile spasms in January 2020, where she spent 2 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 which made Tia “depressed”, she wouldn’t smile, she wouldnt do anything and the spasms where still the same. They started weaning her off epilim and swapped it for clobazam. November 2020 I noticed Tia was doing more different movements and was getting worse and worse. They started her on Topiramate.
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 of what was going on for 7+ hours). I remember one particular night during this time thinking things will get better and made a promise to Tia that I will fight her corner every day until it did.
During this hospital stay she was diagnosed with severe complex epilepsy with global development delay. We were told we don’t know what her future would be and how her quality of life would be. They said her EEG was that messy they can’t pinpoint what types of seizures she was having and told me to get as many videos as possible and keep recording things. Things 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 do something as amazing as help with seizures. I asked about the diet and Tia’s consultant said yes she can be put forward to try it. We went to a bigger hospital who said Tia was a candidate however, a few things needed to be sorted out first before she could start the diet. Around the end of summer I got an appointment for the ketogenic dietitian and was so happy. We had a few appointments and were starting 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 moved to a bigger hospital to start the keto diet.
Because we were in hospital we could go fully keto rather than be weaned on. 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. Tia took the food really well, we ended up doing a 6 week stay. We noticed around a 70% reduction in her seizures by the time we left the hospital. I was over the moon! 17th December 2021 was the last day that was recorded for when Tia had a seizure. She was having some other movements which I was struggling to describe (they didnt look like seizures or her spasms) so I sent lots of videos over and her neurologist and consultant said it looks like dystonia but they weren't 100% certain with it being video evidence.
New Year's Eve 2021 Tia became really poorly and was admitted to hospital via an ambulance. Everyone saw the movements and also said they thought it was dystonia. We had lots of tests while in hospital including bloods, swabs, MRI, EEG, lumbar puncture etc. 10th January 2022 we were given Tia's EEG resul, “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 she would ever be told “no seizures seen". Tia will be 7 months seizure free on the 17th July. This is a miracle!
I've learned 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!
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