Friday, December 29, 2006
We asked if the new types of seizures the tonic clonic and the other one were only likely to occur when Elijah was unwell. The specialist told us that it's not uncommon to experience several different types of seizures and that they would not be limited only to times when Elijah was unwell. We talked about managing the seizures when they occur and they will arrange of the epilepsy nurse from the hospital to meet with us in the new year to discuss the use of diazepam to be administered rectally in the case of long seizures. The Specialist has decided to reduce the clanonzepam that Elijah has been on and to increase the Epilim to 5ml twice a day to help deal with the seizures. So far so good although I am writing this retrospectively.
Since starting to write this Elijah is now had a couple of breakthrough drop seizures and so hi Epilim has been increased to 7ml per day. So far so good no more seizures to speak of and so things are generally going well.
Thursday, December 28, 2006
Let's call the first one - THE PICNIC
I am happy that the weather held out for the Angelman Support Group Pre Christmas picnic - wow there were 6 families there and I got to meet a couple of friends I know Daniel Tobias and Ella, but I also got to meet two Charlottes - and my mum and dad and sister got to meet their parents and brothers and sisters too. It was great and I spared no time getting to know some of the other people and hugging them and climbing on them as you can see. The Picnic was at Spencer Park in Christchurch.
We all had a great time and will be getting together again in January for some more fun.
Me playing in the sandpit
Brent & Me
Me climbing on Trevor
Tobias and Markus Me and Mummy
Trish and me eating some yoghurt
Monday, December 11, 2006
I have been having a happy time, as always, I now have had someone to look after me each week when mum takes Francesca swimming . Her name is Alicia. As you can see we have lots of fun together.
Alicia has worked with other children like me and she is quite a funny lady. I am looking forward to her looking after me.
This past weekend my Grandad and Novina came to visit and so it was fun to climb all over them cause i haven't seen then in quite a while.
I am looking forward to the weekend because I am going to a picnic in Spencer Park with other famlies who have children with angelman syndrome
To be updated.
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
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
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
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
Monday, October 30, 2006
I have to confess that since then I could myself over the weekend getting out of bed to go to Elijah and realised that when my feet hit the floor that I was dreaming, but was getting out of bed in real life - figure that one out. I stopped and listened and in reality there was not noise and so back to sleep. It has taken some getting used to having a full nights sleep - as it's been so long and I know there are folks who will read this email and nod theire heads. There will be others who will be eternally grateful to the Lord, who allowed them access to melatonin and hence preserved their sanity. "It's life Jim but not as we know it." This sleep for Elijah has also meant that along with the meds his seizures are well and truly under control.
I am also happy to report that there are now 8 families in Christchurch with children with Angelman syndrom including a man who has travelled half way around the world from Germany with his family. I met this friend when he wa visting Christchurch - he got my contact details from www.anglemanforum.org and sent me an email - we we able to have some good time togther sharing about Angelman Syndrome as his son who was back in Germany had recently been diagnosed. We hope to have a get together of parents later this month and maybe a gathering with kids before the end of the year.
Well until next time - health to your enemies enemies and peace be upon you and yours
Father to Elijah - Angelman Syndrome Del + New Zealand
Tuesday, October 17, 2006
Well folks that's all to report today - a short but sweet post.
Father to Elijah - Angelman Syndrome Del + New Zealand
Monday, October 09, 2006
Until next time peace be to you and yours - health to your enemies enemies.
Thursday, October 05, 2006
The Melatoni seems to be working well - apart form the weekend when it seemed like it was only every other night that Elijah was sleeping through, he slept through Sunday, Monday night he woke, Slept Tuesday, Slept Wednesday.
On Monday we though we saw waht was an increase in drop seizure for Elijah, by Tuesday they wer more frequesnt and byt Tuesday afternoon were full on drop seizures, and so we talked with the Dr and she has suggested back onto a low dose of the clonazepam, not as much as we had before, but at least enough to get the seizures under control. We satrted on that yesterday and will continue and see how much difference it makes.
We are glad to have had the protective helmet made for him. We didn't have need to use it initially because it seemed like the drops were under control but now we are having Elijah wear it during his wake hours to protect his head. I took yesterday off work as a mental health day - the lack of sleep and onset of seizure needed some mental time out. Today is a planned day of leave and so will enjoy it. Elijah is not at preschool yesterday and today just until we see a change in the seizure behaviour.
Above is a pic of Elijah with his helmet on
By the grace of God go we - until next time
Friday, September 29, 2006
26/09/06 Night One on Melatonin - gave Elijah .3mg of Melatonin - 20 minutes before bed - he went off to sleep without any fuss and he slept through the night until at least 7:30 am. I got up at 7:50am - how fabulous.
27/09/06 Night Two on Melatonin - gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep without any fuss and he slept through the night until at least 7:30 am. We all slept in till 8:20am shock horror.
28/09/06 Night Three on Melatonin- gave Elijah .3mg of Melatonin 20 minutes before bed he went off to sleep no prob he slept until 2 and work and then again at 4:15 - I got up to him at 4:15 and changed his nappy which was full. I left him and with 30 minutes he was back asleep and was still asleep at 8am this morning. He usually wouldn't go back to sleep and so this was a bonus.
Because it is school holidays for this week and next week, Julie spent Wednesday and Thursday Morning with Elijah at the preschool and Francesca went well. Elijah is now with the over 2 children. Julie came home quite exhausted both days as he was justa ball or energy - no stopping.
Until next time
Tuesday, September 26, 2006
We had a great meeting last weekend with 2 other families with "angels" here in Christchurch. It was a great opportunity for the parents to talk with one another and compare notes and stories and encouragement. It was also a good opportunity for our "angels" siblings to meet and interact with one another. There were two other families who were unable to be with us and so hope that in November we will all be able to meet up. By then there will also be a sixth family resident in Christchurch.
Julie has also enrolled Elijah in some swimming lessons and hydro therapy - this will start in October and will run for about 12 weeks. I am sure he will both enjoy and benefit from both of these. It is school holidays at the moment and so Elijah's Support worker will not be at the preschool this week and next week and so Julie will be attending in her place.
Overall we are a happy family with things on the siezure front and we are looking forward to some good nights sleep ahead - yeah
Until next time.
Thursday, September 21, 2006
Here goes and hoping and praying it will have the desired effect - as and hour after beign put of to sleep he managed to ping one of the safety pins on his overall suit get his hand in remove his nappy and wet him self his clothes and the sheet - good job the matress is covered. And still he was a live wire - this picture is Elijah very very late at nght and ready to party. Peace be to you and yours - Dad
Tuesday, September 19, 2006
And so the saga continues - funny it's almost a week and no word from the specialist. This whole sleeping thing is now becoming crazy. I have managed to find a presentation - Sleep Problems in Individuals with Angelman Syndrome - given at the International Angelman Sydrome Organisation Conference in 2001 by Joseph Wagstaff - (http://asclepius.com/iaso/wagstaffsleep.html and associated study and so have sent this to the specialist supporting our request for trialling melatonin - hoping to hear from him soon. Julie is going to see the GP tomorrow and so will also take the same information and will be requesting melatonin from her as well - nothing like a dual pronged approach.
The funny thing is that in the midst of it all Elijah is the one who most all has no problem keeping a sense of humour.
I think our kiwi ingenuity has managed to put and end to the escapism that we had a bout of and we will be making contact with a seamstress soon to work on some night time clothing for Elijah for the Summer, which is not far off. The spring has brought with it warm weather and so we have been able to make the most of this with trips to the park - Elijah has enjoyed getting out in the leaves and the dirt.
As previously mentioned we have a gathering of families with angels this coming weekend and we are very much looking forward to this and it will be good also for the siblings of our angels to have some time together as well.
Well until next time - may peace be upon you and yours and health to your enemies enemies.
Thursday, September 14, 2006
The fun is that for us we don't know when Elijah is going to easily go off to sleep or when he is going to wake during the night or for how long. I hope and pray that at least the neuro may give the go ahead for us to trial the melatonin - this may restore some degree of sanity to our house.
I took Elijah to see the Opthamologist (read eye specialist) yesterday and that went well - Dr is very happy with how Elijah's eyes are and there are not any other ongoing issues for Elijah and his sight. He said if nothing has shown up by now tyhe chances of something developing would be quite low and so we will be in touch with him again only if needed in the future.
It's the week for specialist this week as I will take Elijah to the ENT Specialist tomorrow - read Ear Nose and Throat. Elijah is foever blocked up even when he doesn't have a cold and I reckon his nasal pasages are narrow and he snores like a giant when he is even a little blocked up - and so need to ge this checked out - I am imagining now how much fun it will be holdin onto elijah whilst the doctor tries to look up his nose - no problem with the ears and the throat - well al long as the Dcotor doesnt put his finger in Elijah's mouth he should be safe.
Well I talked with Julie this afo and Francesca has a high temp 40C and so this should be fun - she won't be at school tomorrow and so I will take Elijah by himself. Work have been very helpful and supportive to us particularly when we have appointments for Elijah
Until next time hoping to have a reasonable nights sleep.
Wednesday, September 13, 2006
to be continued
Monday, September 04, 2006
2nd of September 2006
The next challenging thing along side of the escapism - is the sleeplessness - which I think probably encourages the houdinism. Both Julie and I although more Julie are getting pretty weary - Elijah is likely to wake at least once a night if not more and well everynight you can't be sure what you will find when open the door - although a smile and a laugh are almost predictable.
The challenge has now been getting him off to sleep as well and so we are in the process of two things - 1) finding someone who will either take the zips of the front of his pyjamas and put them in the back and 2) find a sympathetic Dr who will prescribe us some melatonin to give both Elijah and ourself some peace at night. Our current Dr is not so keen on the melatonin - she doesn't believe in it - well we do from all our reading and are keen to see if this will be of benefit.
03 September 2006
I am happy to report that after some pushing and shoving and a number calls to the hospital, I feel like we have made some progress. I have made contact with a Epilepsy Nurse at the hpspital who will talk with the Specialist tomorrow and is going to recommend we trial some Maletonin - and see what the specialist has to say. She also told us that she will now be our contact person if we want to talk to someone about Elijah's medication particularly in relationship to his seizures but not exclusively. This is a key contact and now we don't have to go via our GP (family doctor) who has not been particularly helpful these last couple of weeks. You know I hatre to say it but the squeaky wheel gets the oil and persistance pays of a bit like the parable of the persistant widow in from the Bible - Luke 18
"Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2He said: "In a certain town there was a judge who neither feared God nor cared about men. 3And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'
4"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, 5yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "
We give thanks to the Lord that we might now be able to make some progress in this matter.
Until next time
Friday, September 01, 2006
Houdini lives again...............
I know that across the world there are many parents of angels who have to deal with on a day to day basis the 'houdini' characteristic present in their angel.
I have to say that up until now we have sort of had a handle on Elijah's attempts and the successful attempts to extricate himself from his pyjamas. We only recently had to safety pin the zip on his full body pyjamas. Well this has started the nightly challenge of him trying to pop the safety pin free himself from the pyjamas if only partly remove his nappy and mostly thanks be to God - wee. The other new thing he is up to is to pull his legs up out of the leg holes and to sawp the legs over and then cray out or to jam them both down the same leghole and then to cry out in frustration.
Well last night was just the craziest yet and today well here's and example - managing to bob the safety pin and then trying to get out of the t shirt after having removed his nappy. Tonight we have him in this outfit and a sleeping bag over hte top double pinned with safety pins - here to a good night's sleep (he went ot sleep about 9ish) and the inspiration and guidance of someone to hep make some suits with the zip up the back and a tie to stop him puttling his legs up
Ah the joys of life - until next time.
Thursday, August 31, 2006
About 5 weeks ago Elijah experienced the very dramatic onset of seizures - both abscence seizures and drop seizures. This culminated in unconsciousness and being rushed to the hospital by ambulance.
I guess as parent you are always aware of the high occurence of seizures in Angels, but nothing really emotionally prepares you for the onset of them. Many people I have spoken to have told me that their first experience has been a dramatic one.
The long and short is that Elijah takes both EPILIM (SODIUM VALPROATE) and also (ritrovil) Clonazepam - both anti convulsants. We were told that the the Epilim would take some time to take effect and so we were also prescribed the Clonazepam. ( Elijah was having about 150-200 seizures a day).
He has now been on both these medications for about 5 weeks and although he is 1 and a half we have noticed him become more fussy and irritable, moody and grumpy and even a little aggresive. I found that this can be one of the side effects from the Clonazepam - our family Dr was not so quick to agreed with us - resulting in some tension - I pushed the matter and the upshot is that we are reducing the clonazepam - and then will stop it by this time next week and we will see if this has any affect - I hope so. I also found that bloody noses and skin rashes can occur with both or more closely associate with Epilim and so will be keeping and eye on that.
Apart from all this drama - Elijah is enjoying life as he always does - until next time
Monday, August 28, 2006
I suspected that because he had commando crawled for so long that his upper body would be strong - well as time has gone on it certainly hasn't weakened any and in fact if anthing has got stronger. This poses a challenge when it comes to changing his clothes and when he decides that this is not what 'he' wants to be doing. One of the interesting things that he now does is that in his pyjamas - they are fully zipped up (and now with safety pin on zip) he manages to pull his legs up and somehow swap one leg for the other - and then make noise to say please help me ! His is quite a 'houndini' and on a couple of occasions has manged to spring the safety pin and extracate his bottom half from the pyjamas and well then the nappy goes. thankfully there have not been to many artist effort is the last month of so with the contents of nappies (read diapers)
Elijah is not far off walking - pulling himself up on alot of the funiture. Recently at preschool (that he attends twice a week) he stood up at a table for twenty minutes occupied by playing with some jelly type substances. Everything for Elijah is a a million miles an hour and as soon as your back is turned he has shot off somewhere - will be fun when Elijah is up on hi feet independently.
Until Next time
As of this week we now know of a total of four families in Christchurch who have children with Angelman Syndrome. We even heard from the Dad of a little boy who was visting the city from overseas who was recently diagnosed with Angelman Syndrome. He didn't know much about it and so we were able spend some time with him. All going well he is planning to bring his family to come and live in Christchurch and so the Host of Angels in Christchurch is continuing to grow.
Julie and I have given our names to the Hospital and also to Epilepsy NZ and a number of other organisations as contacts for people locally or in the South Island.
We are hoping to be able to meet with the other families in the coming month at least on a social level and then see how we can encourage and support one another on the journey with our angels.
This week was bonus week for me and so I was delighted to be able to suprise the children with some gifts. I bought a battery powered bubble blowing machine for Elijah and a badge/button making set for Francesca.
Elijah was so into the packaging even before I could get it open - he was very curious and then when I go the machine going and boy it does produce bubbles in abundance he giggled with delight and proceeded to chace the bubbles and the machine. Being a little boy he was also interested in finding out about the source of the bubbles. Being as strong as he is = the bubble machine is no match for him - it needed to be " not for Elijah's fingers. Needless to say a fun time was had by all - how can you then be suprised if it took him a bit longer that usual to go off to sleep
Peace be with you and yours
Hi My name is Elijah. At the time of the wirting of this first post I am 2 and a half. I live with my parents and sister Francesca, in Christchurch New Zealand.
Just after Easter this Year 2006, I was diagnosed with and rare condition called Angelman Syndrome.
This blog is my journery with my family to places we have not been and meeting people we have not met before. This blog also is a vehicle to share with people about Angelman Syndrome.