Tia ’s story
On the 8th July 2019, Tia made an appearance to the world. Up until 3 months she was developing within the normal timeline. Just before we noticed the “strange movements” (Infantile Spasms) Tia was starting to sit up on her own, laughing and playing with her toys just like babies do.
At around 3 months old Tia started doing some strange movements – my initial thought was a tick/twitch. This movement progressed into more of the “classic infantile spasms movement”. We took Tia to hospital and was told it was reflux and they sent us home. As time went on the movements got worse and we took her more times to the hospital.. they diagnosed her with a cow’s milk allergy and just kept saying the movements were reflux.
3 months later, January 2020, Tia (age 6 months) had another “bad” episode which made us take her to A+E which when we got there I told them I thought she was having a seizure.
We were then admitted onto the ward where we stayed for 2 weeks and numerous tests were done (EEG, MRI, bloods and lumbar puncture) Shortly after the EEG we met who was soon to be our consultant. She sat us down and explained Tia had something called infantile spasms and they needed to start treatment right away. She handed us a booklet (the UKIST patient booklet) and asked if we had any questions.. I had never heard of this before and if I’m honest the next 6 months became a complete blur. By this point Tia had already regressed (she was like a newborn again).
They started Tia on Vigabatrin. We noticed a slight improvement however the spasms were still there. Therefore they started us on Epilim and eventually we get discharged.
Shortly after lockdown began, which made me feel very alone as no health professionals could come and visit.
The spasms never really went and by November 2020 I noticed Tia was having different movements which I captured lots of videos.
January 2021 – Tia got admitted to hospital as the movements were very severe. They did another EEG and we were told she now had severe complex epilepsy. At this point she had tried a few different medications and our chances of becoming seizure free were getting slim. Tia still hadn’t improved at all with her development all she could do was roll one way). The next steps were to try more medication (which at this point all my hope had gone as she was now classed as “drug resistant”).
It was around this time i started excessively researching.. I was up all night researching, any second I had spare in the day I was also researching. Looking back, the researching started to become out of hand, but I couldn’t just give up on Tia.
I stumbled across the ketogenic diet and I started reading about it all of a sudden I knew Tia had to try this diet. To begin with I was unsure how a diet was going to help if medication didn’t – however I was willing to try anything.
September 2021 – Tia was admitted into hospital because she was having seizures pretty much 24/7. We tried changing some medication around (which actually made her worse) therefore our consultant decided we needed to be transferred to the bigger hospital where we could start the keto diet as an emergency. We were already having appointments with the ketogenic dietitian and was due to start the diet around December/January.
8th November 2021 – we arrived at the bigger hospital and that night Tia had the worse seizure she had ever had. They gave midazolam (twice) and she still wouldn’t come out of the seizure. They then started giving medication through an IV, I remember them trying keppra, phenobarbital and phenytoin and by this point she was sent to intensive care as nothing was stopping the seizure. They started making calls and told me she had 15 more minutes, if she didn’t come out of the seizure she was going to have to be put into an induced coma. 14 minutes went by and she was still having a seizure. Right at the last minute she came out of the seizure!
9th November 2021 – Tia officially went keto. She went fully keto from day 1. We were in hospital for a total of 6 weeks (including being in the other hospital). By the time we left Tia’s seizures had reduced by 85% and she was back laughing again!
17th December 2021 – Tia’s first day seizure free!
January 2022 – we were admitted to hospital because Tia was having breathing problems and some movements. They did an EEG. A consultant came in and told us she was going to be taking over Tia from our old consultant. I remember this moment very well, she came and sat down next to me and I honestly thought we were going to be told some more bad news (seizures are back?) however she went on to tell me the EEG showed no epileptic activity, I asked her to repeat what she had just said because it didn’t quite sink in. She then told us the neurologist has said the movements were dystonia. Therefore Tia had almost gone 1 month without a seizure.
To this day (touch wood) Tia still hasn’t had a seizure and she has started to develop – she can roll, crawl, sit, play with her toys, walk and run in her walker. Although Tia is seizure free we do still face other issues such as development delay, suspected autism / sensory issues. We still don’t know what Tia’s future will be like, however I find its best to take things one day at a time. She started an SEN school in September.
Tia has been on the diet 2 years tomorrow (9th November 2023)!! The diet gave me back my little girl and I’m forever grateful for all the support I’ve been given over the past 2 years.
Chloe – Tia’s Mum