On familiar ground......

Hello all
as we are sure you already know (most of you at least), Patrick has been re-admitted to Southampton General Hospital.

The reason for this is that following on from the posts below when we got the news from the EEG carried out after the appointment with the Neuro, his fits increased quite dramatically. Sadly, this time the fits seem to be causing him pain too as he really squeals and then cries quite wildly as each one hits him.

The seizures were coming in 'clusters' as the Neuro described them and he was having, on average, two to three clusters per hour when awake. On Tuesday he had 17 clusters just during daylight hours, that may not sound much but when you realise that each cluster averaged 10 seizures each, it puts it into perspective. 170 Seizures while he was awake! We are unsure just how much activity there is when we are all asleep but we are hoping to have a night vision cctv camera soon which will record any movement on his part and then e-mail a recording to us if there is any activity at all. We have a camera that allows us to keep an eye on him while we are awake but as he doesn't make much noise, unless he screams out, we wouldn't know if he was having a fit overnight. (If he is asleep during the day and fits, he makes far less noise generally.)

Tuesday evening was even worse and we made the decision to telephone the neurologist weds morning to see about getting him admitted. We were concerned that the new medication swap over was leaving him vulnerable as the old meds wore down and the new meds hadn't built up enough yet. During tuesday evening Gemma recorded in our notebook that out of 60 minutes between 9 and 10, Patrick was fitting for 28 of them!

By the time we got him off to sleep, we were both drained; emotionally and physically washed out. When the morning came, we left a message for the neurologist and she was able to contact us later in the day. Patrick was admitted wednesday afternoon and the whole circus strated again.

Thankfully he is now in a safer environment with regard to having his medication changed quickly and so the change has taken place. He has been violently sick a number of times and this is a known side effect of the new drug and Gemma tells me that this morning (friday) he is not interested in his bottle at all. This too is a side effect that we had been expecting. It all confirms to us that we did the right thing in getting him back into Hospital as I really don't think we would have coped at home. That is to say, yes we would have got the job done but I think it would have left us both in bits. There are certain times when as Parents we need to hand over control to those better able, better trained etc and it is the Medical team's responsibility to do things like this.

Well I am starting to ramble now so I will sign off for now but will try to update later as more news comes in.

Thanks for all the good wishes etc