Friday, November 24, 2006

Still happy to report no more temperature in almost a week now and so the whole family are feeling a bit happier, although Elijah has been a bit fussy with food this week - he still has alittle bit of a runny nose.

This is a picture of Elijah and his sister Francesca a couple of weeks that I picked up this week it's a really nice photo - you can't see my hand up his back supporting him.

Well tonight at least 4 families of children in Christchurch with Angelman Syndrom - well parents will be meeting for a social and just spend some time together and share.

We now know of 9 families in Christchurch in Christchurch with Children with Angelman Syndrome. There seem to be a bunch of children all around the same age. Saturday week ago - to be updated.

Friday, November 17, 2006

17/11/06 8:41

Well I was going to bed close to midnight on on Tuesday night - I had heard Elijah coughing and thought I would pop in to check on him - he was in his cot pale and having a seizure - not a drop or abscence seizure - but he was jerking - head, hands, feet - natura reactio pick him up, we managed to get a temparature - 38.3 and so 5ml Ibuprfen - this still coninue whilst I was holding him for between 10 - 15 minutes (I know the doctor said you shold have called and ambulance) following this he was very agitated and aggressive. we treid to raise some friedns on the phone to watch Francesca but couldn't get hold of her and so woke her up and got elijah in the car and went to the hospital - I rang them and they said they would see him only with a referal from another dr - (this should have been a prompt ring the amblance). So we went and thankfuly we didn't have to wait for too long. Still very agitated. Told the sory to the nurse who took stats - try getting a pulse o2 thingee on his toe - not in a hurry. Then explained the whole thing to the dr who also examined him, by which time he began to settle. then we went to the children's acute assessment. told the nurse the whole story and waited for to see a doctor - by now about 3:30 yah - I have to say Francesca was pretty good. By the time we had told the dr and she had examined him - it was about 4:30 and he was settled and lively. The Doctor was keen to observe him overnight - we told her that he was unlikley to settle at all and she agreed that we could bring him home and at least try and have him sleep in his own bed. So we came home and we gave elijah a little dose of Melatonin and he was off to sleep by 5am. I followed up with the the day doctor - and he told me that the urineg they sampled was ok - but suspected viral infection, although his throat was read this was not seen as the cause and we should watch and observe and come back if concerned no change to medication in the meantime. His temp was up and down during the day of 16th. This left us with questions like is this a new type of seizure that we are only goin to see with sickness? etc - we were told this would be reveiwed when we next saw the specialist and I told the Dr thta we had missed an appointment the previous week because Elijah was unwell.

Elijah work at 3:50am temp 40 - was still 38 @ 5 am after meds etc and managed to go off to sleep for a few more hours.
He woke with coughing


In the mean time the fever has broken and apart from a cough - no high temp in 3 days

Thursday, November 16, 2006

Greetings from a very warn out and tired Dad.

Elijah has had a runny nose for the last 2 weeks now - you will have seen some of the info in my last post well - it hasn't improved any in fact on the Tuesday and Wednesday - he along with his sister had diahorrea - and Mum had vomitting - at least the temp was down for a bit Although on Wednesday night Elijah started having a high temperature again - 37/38/39 on Thursday it was up and down and he started to have drop seizures - yeah - I took him to the Doctor on Friday morning and she said just viral and not alot could be done apart from ride it out. Well his bowels have settled down but the runny nose and the temperatures didn't over the weekend. The Doctor said on friday that we could probably increase the clonanzepam to two drops twice a day in the mean time to combat the drops (we have since heard from the dr at the hospital that they try not to change the medication during this sort of time) - ah well what do doctors know - we only entrust them with our life and health and those of out loved ones - said without trying to sound cynical well too cynical.

The weekend did not see anymore drop seizures and so we did not do anything with Elijah's medication, but regular temparatures reducing routines - know them backwards now. Now let me think what day is it - well it's Thursday now in New Zealand. Monday and Tues Elijah began to have some little drop seizures nothing too big but little clusters - Tuesday night Julie rang me at work as Elijah was having some more intense seizures and abscence - with bubbles in the mouth - and becoming semi consicous. Kept and eye on things

More to follow

Wednesday, November 08, 2006

Morning One and all - this last 5 days has been crazy in our house - Elijah was running a high temp from last Thursday - 39.5 F- meant that he was a bit shakey he has just had ablocked up nose - a bit runny - didn't go swimming on Saturday morning - his tempo was up and down. the temp was up to about 40.5 - which is hot = lots of baths to cool him down.

Saturday was also a really hot day as well that doesn't help much. About 4:30pm he became clingy - I went into the office to get something - he followed me and then without warning a big vomit - took his temp 40 - gave him some Ibroprofed - he wan't interested in liquid ad so I gave him a fruit salad - smoothy I had frozen - drank that - put hi in the bath and he was having some big drops and eyes rolling back in his head - a couple of times I thought he was going to lapse into inconsciousness. slowly his temp came down and stayed reasonably settle the rest of the day.

All I could thik of was - here we go again - in Jan he had vomitting and seizures on a hot day and ended up in the hospital - this was before we knew about Angelman Syndrome. I am pretty sure that the anticonvulsants that he is taking everyday - have gone a long way to help keeping any seizures in check that result from high temp.

Sunday was okish temp was a bit up but settled by the end of the day - Monday ok - Tuesday - along with his sister - elijah has a dose of diahorrea - yukky yukky yukky

Thankfully that only lasted yesterday and his body seems to have settled down. J his Mum was not well either and so that meant that I was home and got to spend a whole bunch of time with Elijah and also this morning - J has an unsettled tummy and so we had some fun times interacting this morning.

Whilst his temp was down Saturday MOrning we visited with a the family of Tobias - who is 3 and has Angelman Syndrome - Tobias and his family have recently moved from Germany to live in Christchurch. Tobias has a sister who is close in age to Francesca and they had a ball.

Well folks until next time - peace be with you and yours.
Father to Elijah - Angelman Syndrome Del + New Zealand