To kick off 2018, this week’s beautiful ‘warrior’ is Alyssa. Her story is told by her mum Laura.
This is Alyssa Isabella born September 2016 by emergency C-section after being in labour for 4 days. We had a blissful 6 months, on the 11th April me and my now hubby got married and had both our girls as bridesmaids. Our basking on the love of a wedding didn’t last long as on the 13th April Alyssa started making funny jumping movements with her arms. I actually laughed at first until it didn’t stop then I cuddled her. This went on over the weekend and we were worried so took her to the GP where we were told it was a startle reflex and to come back in 2 weeks. Fast forward 3 weeks and 2 more GPs we finally got a referral and an appointment on the 22nd June. The 2 months waiting were awful. She cried constantly, never smiled or giggled. Would not nap in the day or eat. Didn’t play with her toys or interact. We finally saw Dr Singh on the 22nd June and he told us the news that broke my heart.
We were admitted to the ward to start treatment and have EEG, MRI and lumbar puncture done. She spent 16 weeks and 4 days on prednisolone, relapsing when we tried to wean so weaned slower and stopped taking them mid October. She has been on keppra since mid October and we have had to play around with the dose first going higher which at 4ml twice a day increases seizures. We are currently back down to 1.5ml twice daily and they seem to be stopping. If not we will be swapping to Epilim.
Alyssa is a lovely, happy, beautiful little girl who came back to me the better she got and the more she weaned off pred. She can walk, walk up stairs, has started copying and dancing and is physically doing fab. Little behind with communication and speech but considering how long she was undiagnosed and untreated for I don’t think she’s doing too bad and will soon be talking my ear off. My biggest regret….. taking doctors word for it and not going with my own instincts.