When Evie was born we had no idea anything was wrong, but after a few days it became apparent. Evie was as stiff as a board when you picked her up, she constantly screamed in pain and would have vacant episodes frequently.
We were referred to a paediatric consultant who stated it was all colic and there is nothing that can be done. We went on for 4 months like that, she was failing to thrive and refusing feeds so we went to our GP and asked to be referred to another hospital for a second opinion, but he saw how poorly Evie was and sent us straight to A&E. This is where everything changed, we saw a lovely Dr who asked to take on Evies case. We agreed and she sent her for an MRI, blood tests and ultrasounds, she said it wasn't normal for Evie to be so stiff and to scream like she did. The MRI showed Evie had brain damage and her Guthrie card showed it was due to a virus called CMV. I caught this virus during pregnancy (around 20 weeks) but I didn’t know as it has few symptoms, the main one being cold / flu type symptoms.
Over the next few weeks we had the heartbreaking news that Evies disability will be quite severe and she is unlikely to talk or walk. She clearly had severe reflux and her bloods showed that she had inflammation and damage to her oesophagus and small bowel because she was not treated correctly, and her absence episodes were in fact epilepsy.
Since then Evie’s epilepsy is still not controlled, she has had many surgeries including a feeding tube placed, SDR surgery to take the spasticity from her cerebral palsy away and we are awaiting surgery for both of her hips to be reconstructed which is due on 12th Oct.
It is heartbreaking to see your child never catching a break, just one thing after another, surgeries are horrendous because of the fear she has now developed with hospitals and she never does well with anaesthetics. Currently we can’t find an epilepsy drug that works for her that doesn’t cause horrendous side effects.
We are always trying to balance the pro’s and con’s of things.