I've decided to share Kasi's story in hopes that it will help other families recognize the signs of this disorder and get the immediate help necessary for their child. I am so grateful for the support of UKIST, family and friends. I have had such great take up on my birthday fundraiser for UKIST, and so many of you ask how she is doing so I've set up this page to not only raise funds for UKIST, but provide updates on her IS journey. 

November 2020 - Kasi started having seizures after her first round of vaccinations at 2.5 months old. It wasn't quite obvious at first as they'd only happen when she was falling asleep or breastfeeding and they didn't look like what you'd think of when you hear seizure. But one night it was obvious and I called an ambulance. He checked her over and her stats we're ok. In hindsight, I should have had him take us to the hospital. The next day I phone the GP who completely dismissed me when I said I think she is having some kind of seizure and told me when was too young. At this point I had already done alot of research so knew something was going on but didn't know exactly what. Right after that I made an appointment with a private paediatrician who sent us for a private EEG. I also made an appointment with a paediatric neurologist to get his opinion. The EEG showed that she was in fact having seizures and we were admitted to hospital. We were supposed to fly to Cayman the day she was admitted so pushed back our flights for 3 weeks. In the hospital Kasi has another EEG and was diagnosed with epilepsy, specifically, she was has having focal seizures. She went in for her first MRI at 3 months old. Results were clear. They also took blood to check her metabolic functions and they were also clear. Finally they "sent off" her blood for genetic testing to see if that was the cause. That was a 4 month wait for results. In the hospital, she was started on Keppra which would take some time to work as it needed to build up in her system. It made her quite sleepy but I started to see a difference in the seizures and we were cleared to fly home. 

December 2020 - The seizures stopped and she was a developing nicely. 

February/March/April 2021 - The seizures started again and Kasi was miserable. She slowly stopped smiling, wouldn't play with toys and just cried all the time. I was in contact with her team in the UK who was adivising me to up her Keppra dosage and wait a week so that it could kick in but they were just getting worse and my heart was breaking all over again to watch her go through that. I was researching different types of seizures and googled what hers looked like and came across infantile spasms. I WAS TERRIFIED. They looked exactly like what she was having from the start and I was livid that I had not pushed more in November when it all began. I joined the UKIST Facebook page, posted her video there and was told to get another EEG asap. Now Kasi is about 6 months old and getting an EEG in Cayman for a child that age was very difficult. You'd usually fly to Miami. However, her local paediatrician made it happen and we got an EEG. It was devastating but not surprising news. Her EEG showed hypssarhythmmia. She was immediately admitted to hospital in Cayman to start the correct treatment. At this point, I was fighting and pushing for everything she needed to get the correct treatment. Her neuro in the UK initially started her on a low dose of steroids (Prednisolone) but thanks to the UKIST support group, I knew that the frontline treatment was high dose steroids for 2 weeks plus Vigabatrin for a minimum of 3-6 months. I pushed for the high dose of steroids and she agreed. Vigabatrin has serious side effects including the loss of peripheral vision so she wanted to be cautious with it, but advised that if spasms hadn't stopped on high dose steroids in 72 hours to add Vigabatrin. We spent 3 nights in the GT hospital in Cayman over Easter, being monitored whilst starting the steroid treatment. We flew back to London on day 4. Her spasms had slowed but not stopped so I added the Vigabatrin. At this point she was on 4 medications. The day Vigabatrin was added was her last day of spasms. Whilst on high dose steroids, her blood pressure was monitored every other day. Unfortunately after a week her pressure was always elevated and we were in and out of the hospital for long term montiroing. After 2 weeks on the pred/Vig combo, we started to wean the steroids. We went back into hospital a few days later for another EEG to check if it had worked. Her EEG was clear so we were cleared to finish the steroid wean but stay on Vigabatrin for any focal seizures. We moved house and we're now under a new team which I was very happy about! I followed up on her genetic test results since it was now almost 6 months since she had given blood and was told delays due to covid. 

May-September 2021 - Kasi was seizure free and becoming a happy, bubbly, playful baby. She was starting to drop the weight she had put on from the steroids and her development had caught up. She was standing from 9 months and started walking just before her 1st birthday. I followed up on generic test results again but was just told they still hadn't received them. In September I started to notice a few odd movements and eye deviations and immediately contacted her team and sent videos. The movements stopped after about a week so I let it go. After about 2 weeks they started again so I contacted them again to say I think she is having focal seizures again and I needed her to have another EEG. They agreed. 

October 2021 - This EEG showed that was having focal seizures originating in the same part of the brain as the first go round. The neurologist decided she needed another MRI now that she is older and sent off the referral. We decided to wean the Vigabatrin since she was on it for 6 months and try a new medication. Once she was completely off Vigabatrin, we started on Topiramate. After about a week these new seizures stopped and Kasi became a different child. Between weaning off Vigabatrin and starting Topiramate, Kasi was extremely vocal (she hadn't been before) and had developed a spunky personality. 

December/January 2022 - We flew to Cayman for Christmas with a very different Kasi. I had her nicknamed hurricane Kasi because she was a little busy body discovering the world, getting into everything, leaving a trail of stuff behind her and so so vocal. A few days before we were to leave Cayman, I got a call from her old neuro to say that they messed up and hadn't sent in the form to have her EEIE genetic test done. Over a year later and it was only discovered because I was consistently pestering them. She said that whole genome sequencing was now available and tested even more genes than the EEIE panel so asked the 3 of us to come in to give blood. This time both Stefan and I would be tested as well. 

February 2022 - Kasi is still seizure free while on Topiramate. Her childminder said that was a different child from the one she first met and was now so happy and interacting with everyone and everything. I call to check on her appointment for an MRI since it was marked as urgent and was told she needed a pre assessment since it will be under GA. I was furious because this appointment could have been booked weeks ago, and now we're waiting 2 weeks for a phone call assessment. I asked after that how long would she wait for an appointment. "We aim to have them seen within 2 weeks" is what I was told. 

So here we are. Kasi is developing normally and seizure free on Topiramate. 14 months since first diagnosis and we still don't have a cause for her epilepsy. We are waiting on her MRI which should hopefully happen at the end of this month and we are waiting on the genetic results from the blood we gave last month. If these are clear it is highly possible that it was just something that happened and that she will grow out of it. 

The UKIST support group has been my saving grace over throughout this journey. I have connected with other families, asked loads of questions about seizures, meds, development etc., and had the support of a community all fighting for the same cause...to raise awareness of Infantile Spasms and help to discover new and better treatments for this devastating condition. 

Thank you for reading this far! Please help me support the UKIST by donating anything you can. I will continue to post updates on Kasi here as and when I have them. 

The UK Infantile Spasms Trust (UKIST) provides a vital network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. This is a serious seizure disorder, and unless it’s recognised and treated early, the prognosis for affected children can be very poor. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. By supporting UKIST, you will make a real difference.