Our May warrior – Benas

Benas was a much wanted baby.  My pregnancy was normal but I was anxious after a previous miscarriage. I remember when I told my older son that he will have a brother or sister he was so happy and kissed my belly every day.

Benas was born with the midwife’s help as he was stuck in the birth canal with his shoulder so he needed to be given oxygen, but after few minutes I heard my baby cry.

All went ok, Benas grew fast and was really strong until 4 months old. When he was 16 weeks we had his immunisations, then a few days later I noticed that he had what I thought was pain in his tummy and he started to have strong spasms. After infacol and gripe water didn’t help I called my GP practice and got emergency appointment, but the GP convinced me that it was simple colic pain, but just in case she called the children’s hospital to get a second opinion, and the doctor there agreed that its probably reflux and I should try gaviscon  and maybe anti-reflux formula. The same evening, the spasms started to get worse so the next morning I filmed his spasms and  I rushed him to A&E, explaining that I had spoken to the GP already and that Benas has very strong colic pain. The doctor said to imagine how we feel with reflux or heartburn, and for a baby it is 1000 times worse, and to continue with infacol, Gaviscon and anti-reflux milk. After a week and a half when nothing had helped I called my Mum to ask for advice what to do, she asked me to send the video to her to see what Benas was doing. After 15 mins she called me back and said “that is not colic pain it is seizures” and that I had the same condition when I was the same age as Benas. I started to look at google for more info and checked some YouTube videos which backed up my Mum’s words. So the next day I called the GP practice and got another appointment and also I had an appointment at the baby clinic. I raised my concerns to my health visitor and she agreed that maybe it could be infantile spasms and to speak to the GP. After checks I was told by GP that she will refer us to neurology out-patients and I should be seen within 5 days.  I went home and relaxed a bit after 3 sleepless nights, By this time Benas was crying very loudly and was losing his reactions to everything  – he stopped looking at toys, didn’t smile and was always sleepy, basically he lost all his skills and became like a new born baby. Next day the spasms were even worse so I went to A&E again. Benas started to have seizures and cry very loud and of course I started to cry as well,  I was lucky that a doctor passed through the waiting room so I grabbed her hand and asked for. Finally after plenty doctors visited us  a neurologist came and confirmed that my concerns were valid and we were admitted. The next morning they performed an EEG and the doctor confirmed that Benas had Infantile  Spasms.

My world just broke. I was so disappointed by doctors who had for weeks told me it was simple colic pain. I calmed down after the MRI scan and lumbar puncture results were normal, that gave me hope that maybe all will be ok, and I started to read more about IS and found UKIST Facebook group, where I got support and information and guidance what to do next,  and encouragement not to lose hope.

Benas was treated with Vigabatrin and Prednisolone. After a month there was no seizure activity so our doctor decided to drop the medication doses but unfortunately we relapsed so we were put back on steroids, but this time for longer and this was successful. Benas started to come back to himself and to catch up with his development with some physiotherapy. We successfully dropped the steroids and after eight months weaned off Vigabatrin. On May 19 th Benas will be 1 year seizure free. He has started walking, playing with toys, babbling, chatting, playing with his brother, he has completely caught up with his development and you would never guess that he had Infantile spasms. I am so happy that we are one of lucky ones, I can never thank my mum enough that she recognised these were seizures and so we only delayed 2 weeks after these spasms started  and we  treated them in time. We still don t know why it happened, as the genetic tests came back normal. I want to say a big thank you for UKIST for their support.