Risk management or Not!

Kian had 3 seizures in the space of 8 hours on wednesday. Tuesday night he did have a little sickness that came completely out of the blue. He then got a raging temperature that I tried to manage the way we normally do, but a little while later it came back and Kian fitted. Always it is a horrible thing to see. I didnt completely expect the second one as there was no temperature. I didnt have to use midazolam for Kian to come out of them but he went a little over 5 mins. There was 5 hours between the 1st and 2nd then it was 3 hours later he fitted again. Those 5 minutes that you are waiting to see if he can come out of a fit by himself without meds is a long old 5 minutes. I was contemplating calling an ambulance with them being quite close together for Kian. He came out of it and I took him straight to hospital. We live 5-10 minutes from it which I never contemplated would come in so handy. I called Kian's paediatrician before we left as we had an appointment arranged that morning, and to let her know what had happened.
At the hospital though he was a fraction of what his temp had felt previously he was 38.9. They gave a dose of neurofen and took his temp a little while later and it had actually went higher.

Eventually his temp came down and we got a urine sample using a pad in Kians nappy. We were referred to childrens assessment unit. They told us the sample showed infection but they wanted us to do another straight into a bottle. We were at the hospital from 9.30 - 5.30pm and did not get another sample. We agreed to go home and get a sample there and take back to hospital the next day. They could feel something on Kian's chest but said no more about it. They had been in touch with Kian's paediatrician and she said that if there showed a big infection (neumonía), then that was why he fitted and we shouldnt up his meds, otherwise it was up to ourselves to decide to up from 5ml to 6ml.
We decided to up the med. It is a very hard decision to make for parents as ideally I dont want Kian on meds which possibly make him more sleepy, affect his development even more and can cause behaviour problems but Kian doesnt have this many fits, even when he is poorly!

I was at a meeting where I and another parent are giving our opinions of a new service being created in our local authority. I spoke of how Kian had been poorly, when I mentioned his meds, and how at the national conference we were advised that kidneys should be monitored, and our Dr, (who I do have alot of time and respect for) decided instead of doing a yearly test said we will wait until something crops up. Someone at this meeting said "they are not managing Kian's health but they are using risk management". It took what that person said, who has never met my child to realise that is exactly how I feel. WHY do we have to wait until something goes wrong?????????? We had an agreement between the Dr that if Kian fitted twice we would up his meds, now he had 5 and the decision was still up in the air. Dont get me wrong, medicating isnt the answer to everything but I know Kian. I know with the syndrome there is a good chance of Kian outgrowing his fits, and I pray for this to happen. But fits can be dangerous- Fact-
I have got used to the fits but I dont want to become too complacent that I dont recognise he needs more help, and it is very hard to make that opinion while your child is fitting.

Craig came home that day from work, as most people know he normally only gets home on the weekend. The next day as our little precious being was lying in his travel cot where we could see him constantly, Craig said he didnt think Kian would have a long life. This isnt the first time this conversation has came about and Im sure it wont be the last. Some people may think that is a strange thing to say, but in our world you dont know what is round the corner, and though that can happen to anyone, we become to expect things to go wrong. Then the next day at the meeting I speak of Kian and Craig and say Im not expecting Kian to be going anywhere. Another parent who has had many battles to fight says that she is the opposite she doesnt know whether her child might go at anytime. That is what it can be like in the everyday life of someone with a disabled child. If some professionals could only understand that! I dont expect Kian to be going anywhere, and the main reason being I cant imagine a world without my little Kian. Kian who after so many days of looking drained and out of it, has smiled all day. He has been full of mischief, he made it know to be when he wasnt happy or when he was really happy.

Is he worthy of "risk managment", I think not!

I feel my blogs can be serious and sad at times and I am hoping they do become happy and witty, because Kian is a happy little person and I do enjoy him so much. But this is our journey, as it is!