It has been awhile since we posted, but wanted to bring you up to date on Faith’s progress. The summer for us was lovely, I felt Faith was coming on so well. Her seizures were at their best generally around the 3-4 hour gap. Her aggressive, compulsive episodes were under control most of the time. She had started gymnastics and was loving it, with myself or Emily going along to watch out for any sudden attacks.
Once school started back and she was going up to year two in infants everything seemed to change. I don’t know if it was the stress of having to concentrate at school again, but we saw a dramatic change in aggressive behaviour, harming herself and trying to harm people around her. Some days these episodes were so bad she couldn’t focus on anything else and missed gymnastics or rainbows. At school her one to one (who knows Faith as well as I do) on recognising these episodes occurring would take her out of class for a bit of quiet time.
Then over the last month I had noticed that during a gelastic seizure her head only would seem to turn to one side as though she was looking over her shoulder. No one else in the family seemed to notice these and I don’t know if I just didn’t want to notice them, so I didn’t say anything. Then one morning as I was filling Sue (the one to one ) in on the seizure activity in the morning during breakfast being particularly longer and louder, she asked me what was with the head movements. So, it wasn’t only me who had noticed. On talking with Sue we realised that they were getting more frequent. This week these new seizures are seeming to be taking over, they start with the gelastic where she will still try and talk to you but then the head will turn, now taking her whole body around with her and her limbs can become quite stiff and jerky though she doesn’t lose her balance. During this stage of the seizure she does not appear to be aware of her surroundings as she will not try to answer me or look at me when I call her name.
I had spoken to my paediatric consultant and epilepsy nurse yesterday, and we had agreed to try and get hold of the specialist consultant in Alder Hay (my local childrens hospital) to discuss medication) Then today while I was at the shops, Sue rang me quite upset to say Faith had just had a large Seizure with severe turning of the head, lasting two minutes. She also stated Faith seemed to loose her colour and was totally unaware of her surroundings. She informed me that while Faiths head was turning it was also jerky and her breathing seemed erratic. She continued to have a further three seizures like this one.
I am planning on taking her in to the hospital today to discuss medication, I am very aware of this change in seizure pattern and quite nervous of them escalating.