In October 2020 we noticed our son Henry doing a strange new head movement where it looked like his eyes rolled back. We called the doctor who initially wasn’t too worried and it was only due to the persistence of my wife that we were granted a hospital referral. We spoke to a doctor working at our local hospital who we sent more videos to, who as a result made a further referral for an EEG in a number of weeks. Fast forward to a month later, 26th November, the movements had progressed to roughly 5 clusters/episodes per day with anywhere between 10 and 30 seizures per cluster. Enough was enough, we decided the best thing we could do was to check Henry in as an inpatient at our local hospital so he could be monitored closely. At this point we were still a few days away from the EEG appointment and Henry’s movements didn’t seem to alarm the doctors or epilepsy nurse. Henry was hitting all his milestones with sitting up, crawling and even starting to stand so there were no signs of developmental regression. I still suspected that Henry had IS and the nurses agreed but urged us to wait for the EEG before we start to panic.
On the 1st December Henry’s EEG showed no sign of the dreaded hypsarrhythmia however did show abnormalities and the diagnosis was ‘multi focal epilepsy’. We were relieved that the dreaded hypsarrhythmia wasn’t found, but we immediately started to worry that we would never find out what’s wrong and this was our new normal. Henry was put on KEPPRA which seemed to have an impact at first but never really controlled the seizures as we hoped. He continued to hit most of his development milestones while on KEPPRA including taking his first steps and towards the end of January 2021 starting to walk. However his babbling stopped and where he used to say a couple of words including Dad he now does not. We weren’t sure if it was regression, the KEPPRA or that he’d been really concentrated on walking and neglected his speech.
As a result of being told he didn’t have IS I left the UKIST support group as I wanted to focus my energy in the right way. Then on 22nd February Henry had 66 seizures in a 17 minute episode and we noticed a change to how the seizures started to look and how it affected Henry. We were due to have a 3 month check up appointment due but this was to be be over the phone. We thought there might have been a dosage issue as it seemed Henry’s dosage wasn’t what he should have been on considering how much he weighed. On the 4th March 2021, after days of trying to get some sort of communication, someone from the hospital rang to confirm that we had an appointment with the consultant but it would be over the phone, I asked if we can at least get this via ZOOM so that I can share recent footage of seizures. Due to our concerns they agreed to see us face to face despite the current COVID procedures. Finally on 9th March 2021, both me and my wife were allowed to the meeting. I had Henry’s seizure record every day for the last 3 months plus the new footage and when the doctor reviewed the video he immediately got on the phone to book an emergency EEG and the IS conversation was back on the agenda. We drove home after the appointment and as soon as we walked through the door, the phone rang and it was the hospital they wanted us to come back for the EEG.
On the 10th March 2021, my wife got the call that we were dreading but one I think we both knew was coming. The result of the latest EEG found the hypsarrhythmia that would now confirm the diagnosis of IS in Henry. We can’t describe how we felt but devastated comes close as the prognosis for infantile spasms is scary and very uncertain. There was also an element of relief that we finally knew what was wrong and what had caused these seizures and more importantly how we could finally help our son. The next day we met with the consultants and epilepsy nurses to plan the course of action in order to give Henry the best chance of a normal development. He was prescribed Prednisolone 10mg 4 times a day alongside the KEPPRA.
We felt surprisingly upbeat, we were in a meeting where we finally knew what was wrong, how to treat and for the first time in months we could see light at the end of the tunnel. The treatment is aggressive and would change how my son looked but all that was temporary, what was important was the end result. We started Prednisolone on the 12th of March, we didn’t get off to a great start as he threw up twice but that was due to poor advice from the pharmacist, but once we called the ward who suggested we administer with juice he’s been good as gold taking his meds. We finished the treatment on 9th April, as expected Henry was incredibly hungry during the first 12 days, he slept more, he did have this moaning sound that does sound like a constant siren for the first couple of days where he was clearly adjusting to the new meds. I’d like to take this opportunity to pay tribute to our incredibly brave little boy who has taken every adversity thrown at him at this young age and smiled. He is the strongest person we know and we are so honoured to be able to say we are his mum and dad. During the steroid treatment I think it’s important to cover the positives , Henry showed no sign of physical regression, has learnt to respond to a new word (turn) when he’s walking away from us we say turn and he does just that with a big smile on his face. Talking of smiles, Henry has always been a happy baby and we were worried but prepared that we would lose that with him for a period of time but he seems to have smiled just as much and is constantly laughing when we play with him. We are currently 40 Days seizure free as of 24th April and we are taking each day as it comes.
Thank you for reading and learning about our Warrior Henry
Matthew & Kerry Rhodes
