This blog is quite long, they won't always be like this...

This blog is quite long, they won't always be like this! It has been quite an eventful week all in all. Amber had not been herself for a good couple of weeks with more severe seizures, and a type that we have not seen since March 2006. I had sent the Neuro an email detailing my concerns, as she had a big tonic on the Sunday, and he rang Wednesday. He suggested that we give Amber a Benzodiazapam drug called Clonazapam for a couple of weeks to see if we could get her over this bad spell, so I got some from the local Hospital Pharmacy, Amber has not been medicated except emergency medication since April and I was a bit reluctant to start it. We had already taken her diet back to the bare minimum which normally would get her back on track (undiagnosed metabolic disorder) but this time is was taking its time. Luckly I did wait before giving her the medication because the next day she turned the corner, and has been brilliant ever since, the seizures are still there but no-where near as severe as they were so that is good news!!

As I said last week I had the social worker, health visitor and community nurse coming to discuss a care/needs for us. I think it was a good idea going in mob-handed to the social worker. She went away with a huge list, that will be confirmed this week, it included personal assistance around the home, direct payments rising to two hours a week, still not enough from my point of view, respite for the family at the Chalfont Farm Hospice near Bristol, and was going to approach some charities about donations for travel and equipment etc. So all in all not a bad outcome!

We still haven't been referred to Metabolic Man, as the neuro is still waiting for some consolidated lists of all the tests Amber has had done, but I hope it won't be too long. Some of you reading this will know of the frustration of waiting for referrals and appointments. You think you are getting somewhere, have the appointment and they say "well we will see you in 6 months" gggrrrrrrrr I hate that.

I have done a lot of thinking this week, wondering what the future will bring for Amber, I guess what will be will be, we will continue to do the best for her, and continue to seek the diagnosis which I am sure will happen, she brings so much joy and love, and when we have these good spells she gives so much back. I spend everyday with her, and marvel in the little achievements, nobody sees what we see, and that can be frustrating at times, because we know what she is capable of. I was looking at the contact a family competition for a family story, I don't think I could fit into 3 minutes of a video, what life has been like for us. So I want to share this with you. Our first second opinion appointment to a London Hospital was in August 2006. This was the turning point, and the reason I have not given up in trying to find a diagnosis. Amber had a seizure whilst we were in his office. He had seen her for 3 minutes, and made a snap diagnosis, I had told him it had been ruled out, but he made it anyway without any EEG or MRI evidence. He started to discuss medication options, and added a comment about driving, that Amber wouldn't be capable of driving anyway. When I questioned what he mean't he ask me if I wanted him, to use his words, "spell it out". A bit shocked I said "er well yes"! he then went on to say that I should think myself lucky that Amber was only on 2 drugs and not six like some of his patients, he went on to describe the future, that she would be bum wipeingly dependant to well into her teens, that we shouldn't concentrated on teaching her to read and write but to dress herself, we should commence her educational statement requirements (she was 16 months at this time), and that although the medication he was suggesting could lead to cortical vision problems, that was the least of her worries. I ask him was he sure and he said "I am 80% sure I am right". So I shook his hand, and said, you could be wrong, and left. I spent the next week, proving he was wrong, which he was. This was the turning point for me. I was never going into an appointment unprepared again, and haven't since. I read what I can, I try to understand the terminology, I go into every appointment with research papers and possible tests that haven't been done. Luckily, from a snow ball affect, fate has given me the best team for my little girl. If I hadn't have questioned that doctor, then I am sure I would be dealing with a very different little girl than she is today. Sometimes you need to be shown the worst case, which in a way I thank that doctor for, to enable you to push on, and it shows us we should never stop hoping or trying to find the best for our children. That particular doctor is renowned for his bluntness, which I now know, and actually I can laugh when I tell other professionals about him. Two years down the line we are waiting to go back for third time! Neurology have come to the end of the road, and thankfully I am confident that no stone has been left unturned. Our Neuro said to me the other day, its parents like me that get the tests done, because we insist. But it shouldn't have to be that way should it, it should be our given right! Luckily with the internet, there is a vast amount of information we can access and support groups are growing, we "parents" are getting more educated about our children and their medical needs, thankfully we share stories, we share the highs and the lows, and we hopefully help others with the knowledge we have gained. No parent should ever been afraid to question a doctor, no parent should ever feel unsure about putting a piece of paper in front of a doctor and saying "well have you considered this", with this growing medical resource at our finger tips it SHOULD be expected.