Wednesday saw Elijah have several clusters of seizure in the afternoon well about 30 in a 3 hours period. Not sure what brought them on - he went to sleep early and slept pretty much through the night and nothing out of the ordinary today. We will just need to keep an eye on him. Julie is also still keen to get his ammonia levels tested the Specialist has refused once but we can always ask again. And I will try and contact him tomorrow being Friday, Although I have to confess this is always a challenge.

The exciting new of the week is that the we - the Christchurch Angelman Support Group have gone online @ www.angelmansyndrome.org.nz the hosting of the site is being sponsored along with the domain name registration as well. This is a great opportunity for us be in cyberspace and link with other families in New Zealand and also internationally.

Next week we have a meeting of the support group and will be watching a presentation about the genetics of Angelman Syndrome from the AngelmanNZ conference earlier in the year.

Until next time

It' been a reasonable week for Elijah, no more significant seizure since last week and we have had no change in his medication. We have however noticed that Elijah seems to be having some seizures as he goes off to sleep a couple of people posted on the Angelman Listserve talked about their kids having twitching/myoclonic seizure as they go off to sleep or in fact during their sleep. We have noticed since the last couple of big clusters of seizure he has had in he last 10 weeks elijah is having these. We recognised he "twitching" as seizure activity when we watched a DVD about Angelman Syndrome and the section on seizures shows a little girl with the twitching - fingers, toes, hands and feet. :Last night when he was awake at 2am I noticed he was having the twitching as well both when he was awake and after he closed his eyes as well. This is something that we need to talk to the Specialist about as I wonder if this is partially why he wakes up during the night apart from just having a full nappy. I wonder how much this activity is going on during the night. We might also try and get some overnight video footage.

The other thing we are considering is a wireless camera for his room so we can observe him easily either via a monitor or record his sleeping or not sleeping for our records or presenting to medical staff. The gear will will cost $3-400 and so we are exploring some funding avenues for this.

TBC..........

Darren

Friday
I am happy to report Elijah slept through - he night albeit drug assisted and also Thursday night - he usually only sleeps through -4 out of seven. Happy to report that Elijah has been seizure free today and full on as ever. We are sort of in recover mode. No changes to his medication at this point in time. Dr says not sure it was ingestion of the laundry powder even a little would bring on the seizures - but no other clear explanation to date - not always helpful but the Lord knows. He has however developed a bad case of hives also all over hi body - Dr says nothing to worry some type of allergy - haven't tracked it down. we are giving him some low doses of antihistamine to stop the itchiness.

Well it's been a wonderful day today to balance out the week 1) Julie and Elijah came with me to work today for a meet and greet - the people at my work have been wonderful in supporting our families adventure to the Angelman Syndrome Conference in Australia in October and have raised more than $1000 for us. This was an opportunity for those helping us to meet Elijah. He left his impression - hugged lots of people and had lots of fun in three floors. Then we we took delivery of a new car seat, buggy highchair and walker for Elijah all funded by through Ministry of Health and a bed is on the way as well - all of these things will make life so much easier for us caring for Elijah making life easier for us as well. They are just so wonderful. we are truly thankful - will post pictures soon

On the Journey - till next time
Darren

Elijah was in the hospital on wednesday with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people

Just a note to let you know that Elijah was in the hospital today with seizures - not sure what the cause was today - perhaps the particularly warm temperatures may have set them off but plenty of them, this was coupled by Elijah managing to ingest some laundry detergent - just a little that has spilled down the side of the washing machine - this little boy is so quick to try and keep up with and it's always a challenge and managed to get some to his mouth before he was discovered. He was treated by Julie with some milk as recommended by the outside of the detergent packet. We had some friends take Elijah and Julie to the hospital Emergency dept and I met Julie there from work. Francesca was able to stay with some other friends until we came home this evening. Elijah has a good number of full on drop seizures before going to the hospital and a number on the way and continued to have quite a lot whilst at the hospital. Thankfully the doctor we saw at the hospital in the Children's Acute Assessment dept knows us and Elijah - is one of the paediatric registrars who we have seen in clinics with Elijah's specialist. The decision was to treat him with diazepam a drug that helps to break clusters of seizures and his meds will be reviewed in the morning. It was quite a day today and we are hoping for a good night sleep for him. We waited and hour after he had this med and we will have to see what tomorrow brings. It is only just on a month since were last at the hospital with seizure and so we are hoping for some reprieve in the coming weeks.

We are learning it takes special people to take care of special people.

Darren

Well the last two nights have not been flash nothing like a broken sleep - Elijah was awake I we both were up with him Wednesday night, Thursday night Elijah woke and Julie got up to him @ 1:30 and then Julie asked we to get up to him after that. I partially woke up and got as far as getting part of the way out of bed as i heard him crying - I have no idea what time that was but I didn't make it any further and I guess he just went off to sleep because I do remember being cold and pulling the covers back over me and went off to sleep.

As previously mentioned we have now some great respite for Julie - 10 hours a week called Home Support and then 36 days carere support to last us through to February - which is still about 1 day a week if we need it. The lady who has been helping is just great with Elijah and also with Francesca and lives locally. We have two other agency lined up to helpus but have not yet identified anyone yet.

Until later Darren

I am happy to report that we are almost one week reducing the Clobazam without thee return of seizures or any adverse reactions - which is fantazmagorical !!!! We still have been having a bit of a battle with sleeping - he has slept through 2 out of the last 5 nights although I happy to report that there is relief on the way. Last Saturday Francesca and I went to see a family in Christchurch who also have a child with Angelman Syndrome. She has offered to make some sleeping clothes for Elijah. We took with us the sleeping suit that he has and manages to get out of and also the sleeping bag that we put him in as well. We had some discussion about what would work best, Trish then took some measurements some photos and said no problem she could make them for us no problem. What a blessing ! No more trying to put safety pins where he can't reach them and him getting into his nappy - this sounds like bliss and the opportunity for more sleep - yeah.

Also I Am most delighted to report that our fundraising for the whole family going to the Angelman Syndrome Confrerence in Australia in October has had another boost we are looking like we will clear 300 on the lamingtons and we were given another 500 from my work - To be continued

I spoke with Elijah's Neuro yesterday and he agreed to in light of abscence of "viral infection" that we could reduce the Clobazam medication that we were giving him for the seizures cause by the infection. So we will reduce by one dose each day and then after one week we can give it away completely. At least this will be one less medication to have to give him.

I also asked him about testing the Ammonia level in Elijah's blood, which I had asked him about before - he seemed a little hesitant but agree to have his blood tested when we were next in - which turns out is not until July - we had read that raised ammonia levels can cause issues like seizure activities.

more to follow