Here is the really beautiful Noor, our Warrior this week, as told by Mum Saima in her own words.
My daughter was first diagnosed with focal seizures at 4 months, a week before IS, I didn’t want to believe that she is having seizures and I refused all meds for a few days, as I already have a severely epileptic son with complex needs now aged 13 who’s seizures have never been controlled, seeing him take a lot of meds daily I did not want my daughter to go through this. I felt any meds they give her will cause side effects, I was in denial I just wanted it to stop, but only way it could is if she is put on the right meds to help her, I had to make that decision ASAP as a few days after refusing any treatment her seizure changed to full generalised seizure, mouth frothing, vigorous shaking, eyes rolled back and lips turning blue, I took her to A&E and knew I had to make her better and only way I can is through treatment.
Thankfully she recovered from that and was put on Keppra, stopping any seizure she had. Until I was hit with another horrible decision to make when IS started, I fell to pieces, I was screaming inside telling God, why me? Why again? This baby I had 9 yrs later was suppose to bring me joy, I couldn’t face seeing her like that, and through treatment I felt I lost my beautiful baby, that smile she had disappeared, she stopped focusing, she lost all ability she gained in a short space of her life.I longed for it to return, I prayed and prayed sooo much, I cried myself to sleep, I had an amazing reassuring paediatrician who gave me hope. Noor was put on ACTH and Vigabatrin straight after receiving EEG results stating her having IS hyps. She started gaining a lot of weight, she was put on pred and I remember her continuous crying that went on for hours and hours.
Nothing was working to calm her down, this went on for a few days, I had lack of sleep, like 2 hours sleep each day,till she adjusted to the med, My baby became mute, she just sat on the corner of the sofa quietly like a little doll with no life, I felt I am losing the happy child that I bought into this world, soon as the med wean started, my baby girl started to smile again, she started cooing ,her abilities she lost was returning, now she is totally weaned off since September she has learned to follow and fix, roll over both way, gained good head control, she lifts her head during tummy time, still has low tone in her arms and is now learning to sit independently, she is almost there with sitting. She is turning 1 in a few days.
She is such a happy baby, wakes up smiling and giggles and makes many different sounds when playing, nothing familiar as yet but I have hope it would all come in time. Please don’t lose hope, you have a special little one who needs all your support.