It seems that we sort out one thing and another thing rears it’s ugly face. Over the past few days and nights, Charlotte’s seizures have become more frequent (happening every three minutes or so, even when she is asleep) and stronger. She has described the change as being more juddering. Ever since they started two weeks ago she has had a warning feeling in her tummy just before each one happens. This has been useful as she can pass over a drink or anything breakable before the seizure occurs.
Over the past 48 hours she has said that the feeling in her tummy just before has not gone away after the seizure (which is what has happened over the past couple of weeks). Instead the feeling has been growing as if something big was coming. The night before last, she and Lillie were up most of the night. Charlotte almost passed out, Lillie caught her. At this point her eye sight was flashing. One minute she could see bright lights, the next it was all black.
Yesterday was her worst day yet, seizure wise, and last night we think she maybe had the bigger seizure that she had felt coming on in her tummy. She does not really remember much of it, but her twin was with her throughout and was able to describe what happened. Charlotte apparently screamed out in her sleep shouting to Lillie that there were faces and bright lights around her. It transpired that she was hearing things – voices, bells and breathing, as well as seeing things, Lillie standing over her (but she was actually in bed) and lots of eyes staring at her. She was awake, in that her eyes were open, but she was not aware or focusing her eyes which were moving around to somewhere behind Lillie, back and forth. She was terrified and shaking all over (not in a fit) as well as soaked in sweat. The last thing Lillie heard was her telling everyone to be quiet (at this point it was just Lillie and her in the silent dark). She then fell asleep. All night she continued fitting but did not have anymore sensory issues.
This morning she remembers hearing the voices at the start as she thought it was Lillie talking to her. But she has no recollection of anything else. This morning the funny feeling in her tummy has gone and she is just exhausted even though she slept until mid-day today. She is fitting still but is awake and they are not as strong as yesterday.
We are seeing a consultant neurologist tomorrow. Please could you pray that we get some answers, and also that poor Charlotte doesn’t get any further symptoms. I fell apart completely yesterday. I am so worried about her. Please pray that I am braver and stronger and so able to support her in the way she needs to be supported.