On the 11th of June 2017 Joey Silke arrived after a healthy pregnancy and a drug free natural birth. We were thrilled as was his older sister Molly. Joey was like every other baby development wise and was sleeping through the night from 4 weeks old.
At 6 months old I noticed some odd movements, I thought I could see a pattern in these movements so I began to write down every time they happened and recorded them, and I was getting more concerned. I sent my husband to the GP with Joey to have it checked out. The GP assured it seemed to be nothing but he could send a referral to be seen in around 3 months. This made me even more concerned so I made an appointment to see a private paediatrician a few days later, I was lucky to get a cancellation as the waiting time was 6 weeks, the crazy mummy crying on the phone may have helped my case.
I saw the most wonderful paediatrician Ethel Ryan, she checked everything possible with Joey and said he was developing normally and doing great. She told me to send the footage I had to her by email and that she could forward it to a professor of neurology. That was on Thursday afternoon.
On Saturday morning I got a phone call from her to say Joey was being admitted on Sunday for an EEG, MRI, lumbar puncture and blood tests. It was the most frightening phone call I have ever got because I knew then something very serious was wrong.
After a couple of nights in hospital and after some really tough times with blood tests and Joey being put under anaesthetic for the MRI, Joey was diagnosed with infantile spasms the most severe form of childhood epilepsy. I’ll never forget those words. I had read about infantile spasms so I was well aware of the devastation they can cause. That was the day we met Professor Nicky Allen who diagnosed Joey so quickly, and was the most amazing support to us.
The next step for Joey was treatment of steroids, a high dose which is extremely hard on a baby. Joey was 6 weeks on steroids, the effects of which are a baby who is constantly hungry, irritable and gaining a lot of weight. We got home from hospital the day after he started treatment. Steroids were given orally in a syringe 4 times a day. During all that 6 weeks I never once gave him the medication even when my husband returned to work he left work every day to give Joey his meds. I couldn’t give it to him because my nerves were gone shattered, we didn’t know if this treatment was going to work and time is not on your side with infantile spasms as the longer the seizures go on the more brain damage could be caused. I could not sleep as all I could think of was the worst and I couldn’t face it.
Joey had to be brought to hospital every week to be weighed and blood pressure checked. We met Prof Allen there every week and he was always there to answer any questions and reassurance. I do remember asking him if Joey would walk and talk and his answer that it was too early to tell. Very frightening words for a Mum to hear.
Joey’s immune system was also suppressed while on steroids so we had no visitors at the house and sanitized when we left which was not very often. I got through this with the support of some very close friends and family and I am eternally grateful to them.
I also joined a group on Facebook – the UK infantile spasms support group, this group really helped me as it is advice from people who have gone through and are going through the same thing.
Joey had his last seizure on December 28th 2 weeks into his medication. We were one of the extremely lucky cases where this worked as in many cases it doesn’t work.
We then had an early intervention team assigned to us as on Joey’s worst day he had up to 130 seizures. Over time they were going to be able to tell if Joey had been damaged or developmentally delayed and a long list of other frightening possibilities. That’s when we were visited by 2 amazing ladies Sinead and Sorcha. They came to our home for the first appointment, and because my nerves were so bad I couldn’t drive without wondering was Joey ok in the back seat they came to the house for every single appointment. As time went on Joey was passing every single assessment they had done. And just before his 2nd birthday he was discharged from early intervention he was walking, talking and doing everything he should be for his age. That day he was discharged I cried tears of happiness and still cant believe how lucky we have been with Joey. I am grateful every single day.
Joey will be 3 in June he is a pure boy and gets away with murder as we still live by the motto – sure isn’t it great hes able to do it!
We are aware seizures could return for Joey but praying every day that they never do.