Confused!

Kian had another seizure last monday, his known previous one before that was Feb. He was absaloutely fine on the monday morning and I took him to nursery as norm. A week or two before he had had a cold and there does seems to be lots of colds and bugs going around. At 1pm I got the call from his nursery to say he had had a fit. I got to the nursery within 5 mins. They had administered the midazolam though by how they describe he was possibly coming out of the fit before they gave it. It was the first time that they had saw him have one and I think it is very difficult those first times knowing what to expect. They said he had been happy as normal beforehand babbling and playing and then had just flopped down. They looked after him really well.

Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!

That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.

ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.

Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!