In the middle of April my daughter began to walk with a limp and was losing her balance, walking into things and falling over. And with her having had diarrhoea for a week, something just didn't feel right and I took her to our local a&e to be checked over. After waiting for over 6 hours and what I felt was not adequate checks they sent us home telling me that there did not appear to be anything clinically wrong - her temperature and observations were all normal and she didn't seem distressed, so they said to monitor her and take her to the GP if I was still concerned. I was made to feel like an over anxious parent, but I KNEW something was wrong. Later in the week, I felt things were deteriorating with her walking and stability so I took her to the GPs in the hope for some answers. The GP suggested she may have a mild gastroenteritis, and the reason she was unsteady on her feet was because being ill had made her feel weak. I still wasn't convinced but by this point thought I must be overreacting as I had now had 2 doctors tell me I had nothing to worry about!
2 days later things had got even worse. My beautiful baby girl had woken up unable to walk, her right arm was hanging limp by her side and she couldn't talk as her face had fallen in one side. Needless to say my DH and I rushed her to A&E (a different one after my previous experience) and we were eventually admitted, but the consultants were puzzled by her condition. They wanted to do an MRI but as she was admitted on a Saturday and MRIs were only done on weekdays, we knew we would have to wait until Monday morning before a possible diagnosis could be found. By the monday, she was even worse, unable to even sit or support her head. She was just lying there, helpless, and there was nothing I could do or say to make things better for her. By this point the doctors were too worried to consider sedation for the MRI, so we were transferred by blue lights to a specialist hospital where she was rushed onto the high dependency ward and given an IV drip and feeding tube as by this point she had now lost the ability to swallow. Both my DH and I were devastated, as we still didn't know what was wrong, and neither did the doctors. The following day, she finally had the MRI scan she so greatly needed and from this the doctors made their diagnosis. acute demyelinating encephalomyelitis (adem). We had never even heard of this condition before and were told it was rare. It is an autoimmune condition, usually brought on by a virus or bacterial infection and it had caused lesions on her brain. We were devastated. She was put into 3 days of IV steroids and then oral steroids for 6 weeks, however they finally let us home after 2 weeks stay. She was still unable to walk, her arm could still barely move and her speech was nowhere near as good as it had been previously, but we were so happy to have her home!
That day was 6 weeks ago, and this week we have spent the last few days back in hospital again, as we felt she had deteriorated. She had been coming on leaps and bounds, walking, chatting away and her arm's movement had improved significantly but again I just noticed a subtle difference. After another MRI, we have been told that some of the lesions on her brain have become cystic and we have been referred to one of the top paediatric neurological consults in the country to further discuss her condition and long term care. That appointment isn't until the first week in August! How can I possibly wait that long?! Her condition is currently stable and for the time being we are carrying on as normal, both back at work and she is back to the childminder, something which wracks me with guilt, as I feel I'm not there when I should be. Just counting down the days to her appointment, when hopefully we will get the answers we so desperately need!
Not really sure where I'm going with this but I needed to share. To inform as much as anything, as it is a condition that we had never heard of. And also to say, a mothers instinct is a powerful thing. Trust it!
And finally, if anyone else has had a child affected, I would really appreciate any information you can give me.