Pain and Understanding

On Sunday Kay was cycling between sleep and anxiety attacks in about 60-90 minute intervals. During the day I began to question her about the cause of her anxiety. Yes, she was afraid that she was dying. Yes, she was afraid of the attacks. Yes, she was afraid of the terrible tummy cramps that she was getting. And slowly it occurred to me that Kay has an adult's perception of her circumstances but a child's ability to understand them. No-one had bothered to explain to her that she wasn't going to die from tummy cramps. Nor had we adequately explained that although she was getting epileptic attacks, they too were not going to kill her - even though she might feel like it - and that they didn't mean that she was on the road to death.

Kay has been at least partially conscious during these attacks. She could hear Marion screaming at the start of Saturday's and she felt like she couldn't breath. I haven't yet mentioned it, but she had another attack on Sunday, which was fortunately a quieter and more dignified affair. Nobody panicked, we just sat and talked her through it and held her hand. Again she was aware that the attack was starting and she was mostly aware during the attack. Again she felt that she couldn't breath.

The poor child was really terrified and the terror itself was pushing her towards another attack. So during the day I spoke to her about the pain and the attacks and reassured her that they didn't mean that she was going to die. However, I'm just Daddy and Daddy would say that now, wouldn't he? So I asked Esther, our duty nurse at the time, to talk to Kay. Esther has a lot of experience dealing with epileptic children and she did a brilliant job of telling Kay the whole truth without deflecting or dodging the tricky issues. After this Kay was a bit more relaxed.

Yesterday Marion exercised parent power and demanded that Kay be allowed to talk to a child psychologist. This was arranged and again, Kay is better for it. However, today I notice that as she recovers from the last few days her recollection of events is fortunately fading (I wish my recollection would fade). So I guess that we will need to repeat these assurances constantly during the next few days.

No attacks since Sunday evening. We had a relatively quiet night last night, relatively being an important component of this statement. This morning Kay is looking better. She has walked 3 metres to the toilet, which is the first time she's walked since Thursday. She's now sleeping, my gorgeous girl.