Well last weeks EEG wasn't great. William was given melatonin to make him go to sleep but William being William he stayed awake throughout!
He did have a seizure whilst the probes were on so we presumed that would record some seizure activity but we have since had a call from the paediatrician with the results. It showed that Williams brain pattern is massively abnormal which we were expecting (doesn't make it any nicer to hear though) but there was no recorded seizure activity on the report including the time when he had what was visible to us as a seizure. Very strange!
So we are booked in for an appointment with the neurologist on Wednesday in the vague hope she may have some answers! Either way we are planning to request another MRI as he's not had one since he was teeny tiny (about 7 days old) and it wasn't very clear. Maybe a clearer MRI will show exactly what damage there is and give some answers?! Probably not but worth a try!
We also had a chair assessment last week but it wasn't very successful. The chair wasn't the right size for William and he hated it - screamed the place down! So we wont be getting one of those! But on the positive side, the lady from wheelchair services came to the appointment and was able to see William in his other chair and was so impressed that she has agreed that he does need another one on a buggy base so he can go out and about in it. So Chailey will hopefully be getting the go ahead to start making a new one soon!
William has been doing very well this week though, he had OT today and his therapist, Jane, was very pleased with him. He seems to be coming along really well in his chair and concentrates so hard to try his best to do what is asked of him. I think with a lot more time and a lot more encouragement he could definately learn a lot. He is a very determined little boy that's for sure!
The last few weeks when Williams been in the bath with his Daddy they've been working on pushing toys away from him and he seems to understand the concept and what is required, he then concentrates so hard to do it and sometimes he manages but other times he concentrates so hard he goes off into one of his "seizures" bless him, I am so proud of him for persevering and not just getting cross whenever he can't get his body to do what he wants.
This week is a little less hectic than last week, only OT, Physio, neurologist, school for parents and three sessions at nursery to fit in along with a photograph for the local paper and 2 Christmas parties! Honestly don't know how I could possibly get a job with all that going on!!
The Facebook auction is now up and running so don't forget to check it out www.Facebook.com/pleasehelpustohelpwilliam.
Monday, 21 November 2011
Monday, 14 November 2011
Seizure city
Williams seizures have increased. A lot. He was having about 4 or 5 a day but recently he's had 11 just at nursery and he's only there for 3 hours! So it's more like 20-25 a day which is really scary.
We've seen the paediatrician and his medications have been increased but that's not made any difference at all. So the next step is steroids but that has no guarantee of getting on top of them. So today we are off to Haywards Heath to have a sleep EEG. William will be given melatonin which is a hormone type drug which will send him to sleep and then lots of tiny electrical wires will be stuck onto his head to measure his brainwaves!
Once we've got the results of that the doctors can see whether anything has changed since his last one and they'll know how much steroids he needs!
Luckily he hasn't had a big one recently but the little ones although they don't look scary actually scare the hell out of us as we don't know what damage it is causing to his brain. He's started to become really upset after them now which isn't nice either.
Williams seizures aren't typical like the ones we all see on the TV where the person is convulsing on the floor. They are strange to see and most people don't notice them, apart from friends and family who have seen them before and people who understand epilepsy!
His head turns to one side and drops down and his arms fling out to the side - sometimes his eyes twitch, sometimes his head twitches, sometimes he makes groaning sounds, sometimes he laughs and sometimes he cries. The main thing is that his body, which is usually so stiff, goes completely floppy and his arms are so stiff you can't bend them, his head locks in place and there is nothing you can do to move it. Sometimes he is still with you in that he will make eye contact and follow you if you move but other times he is away with the fairies somewhere we would never know of. It's scary.
There are no specific triggers. He can have them when he's happy, when he's sad, when he's tried, when he's alert etc etc. He even has them in his sleep now which isn't great and makes him scream the place down.
We've seen them so many times now that we try to make light of them when there are people about so as not to scare them too.
Anyway, hopefully today's EEG will give us some answers about where to go next and maybe we may be able to take control of them at some point and give William a break from them.
If anyone has any magic spells to stop them please let us know!!
On a lighter note. The auction and wine tasting went really well. We raised an amazing £2400 at the auction which is just brilliant! Our next Facebook auction starts this weekend (Saturday) so take a look www.Facebook.com/pleasehelpustohelpwilliam.
People are always asking me where I get the enthusiasm for all this fundraising and organising things and it's simple. The more time I spend thinking about things like that, the less time I have to think about the seizures, the tests, the drugs, the Physio and of course the future.
Xx
We've seen the paediatrician and his medications have been increased but that's not made any difference at all. So the next step is steroids but that has no guarantee of getting on top of them. So today we are off to Haywards Heath to have a sleep EEG. William will be given melatonin which is a hormone type drug which will send him to sleep and then lots of tiny electrical wires will be stuck onto his head to measure his brainwaves!
Once we've got the results of that the doctors can see whether anything has changed since his last one and they'll know how much steroids he needs!
Luckily he hasn't had a big one recently but the little ones although they don't look scary actually scare the hell out of us as we don't know what damage it is causing to his brain. He's started to become really upset after them now which isn't nice either.
Williams seizures aren't typical like the ones we all see on the TV where the person is convulsing on the floor. They are strange to see and most people don't notice them, apart from friends and family who have seen them before and people who understand epilepsy!
His head turns to one side and drops down and his arms fling out to the side - sometimes his eyes twitch, sometimes his head twitches, sometimes he makes groaning sounds, sometimes he laughs and sometimes he cries. The main thing is that his body, which is usually so stiff, goes completely floppy and his arms are so stiff you can't bend them, his head locks in place and there is nothing you can do to move it. Sometimes he is still with you in that he will make eye contact and follow you if you move but other times he is away with the fairies somewhere we would never know of. It's scary.
There are no specific triggers. He can have them when he's happy, when he's sad, when he's tried, when he's alert etc etc. He even has them in his sleep now which isn't great and makes him scream the place down.
We've seen them so many times now that we try to make light of them when there are people about so as not to scare them too.
Anyway, hopefully today's EEG will give us some answers about where to go next and maybe we may be able to take control of them at some point and give William a break from them.
If anyone has any magic spells to stop them please let us know!!
On a lighter note. The auction and wine tasting went really well. We raised an amazing £2400 at the auction which is just brilliant! Our next Facebook auction starts this weekend (Saturday) so take a look www.Facebook.com/pleasehelpustohelpwilliam.
People are always asking me where I get the enthusiasm for all this fundraising and organising things and it's simple. The more time I spend thinking about things like that, the less time I have to think about the seizures, the tests, the drugs, the Physio and of course the future.
Xx
Tuesday, 11 October 2011
Finally William has a chair!! Yippee! It's brilliant and I am very pleased to say that he likes it too! He's managing about 20-30 minutes in it at a time at the moment, he has had a few times when it's been longer but we are slowly easing him into it. I've been trying to get him to eat his lunch in it but he is struggling with that as he is so upright and it just spills out of his mouth and then he just gets cross and refuses to open his mouth! Think I would get cross if my lunch was just dribbling down my face though!
So hopefully if he manages to tolerate the chair for the next month or so then the lovely people at Chailey will make him another one which can go onto a buggy/wheelchair base so he can go out in it and take it to nursery with him. That'll make a huge difference to how he can get involved with the other children as he can then hopefully join in with the activities they're doing - painting etc etc!
On the subject of nursery, his mainstream nursery seems to be going really well and William is loving it there which is just brilliant news. They are going to slowly transition him into the next room up- he's still in the baby room at the moment so the worry is that he is getting bored there. My only worry is that the noise in there might upset him but if it's a slow transition then he will soon get used to it and they're so good there I have no doubts that they would soon take him out if he did get distressed.
William has been very clever recently, I've been teaching him to knock over a tower of cups when he is side lying during his brainwave therapy and last week he managed to do it himself. It was a very slow process for him and he was concentrating so hard that he was grinding his teeth and dribbling everywhere but very slowly he managed to move his arm over to the cups and slowly knock em over. We've been practicing every morning and he is managing it about 3 or 4 times in a row now. Don't get over excited by this news, it is brilliant but by no means is it easy for him, it's a massive effort for him and he finds it so hard but once he manages it he seems very pleased with himself!
He has progressed loads when lying in prone (on his front) over his wedge. When we first started the brainwave programme he would extend as soon as he was on his front and would banana right backwards. Now he can weight bear on his hands for a while and will keep his head down looking at a book or a toy for quite some time. When we first started I had to be behind him holding him but now he can balance much better so I can come to the side to play with some toys with him which is amazing. Still working on getting him to turn his head to the right as he is always turned to the left but that is also related to his loss of vision on the right hand side.
He has also been playing peek-a-boo with some silver paper and a sensory scarf, lying on his back and he will try very hard to bring it over his face, he still needs a it of help to start with but nice we've done it a few times he tries even harder and will bring his arms down most times to reveal himself!
Still not getting anywhere with standing frame issues, think everyone has forgotten about it to be honest so William is still not standing which isn't good for his hip development. Will have to kick up a fuss soon I expect.
I've just read a brilliant book about a mum whose little boy had cerebral palsy, I would recommend it to anyone who wants to get an insight into the lives of families like ours it is so true to life. It's called Blue Sky July but make sure you have some tissues ready as it is a very emotional read!
Don't forget to check out the website for all our events coming up - this week it's our charity auction with Ian Towning as our auctioneer (Ian is a dealer on ITVs Dickinsons Real Deal) and we also have live music from Terry Winstanley (X Factor) and Mick Short! Looks set to be an amazing evening!
So hopefully if he manages to tolerate the chair for the next month or so then the lovely people at Chailey will make him another one which can go onto a buggy/wheelchair base so he can go out in it and take it to nursery with him. That'll make a huge difference to how he can get involved with the other children as he can then hopefully join in with the activities they're doing - painting etc etc!
On the subject of nursery, his mainstream nursery seems to be going really well and William is loving it there which is just brilliant news. They are going to slowly transition him into the next room up- he's still in the baby room at the moment so the worry is that he is getting bored there. My only worry is that the noise in there might upset him but if it's a slow transition then he will soon get used to it and they're so good there I have no doubts that they would soon take him out if he did get distressed.
William has been very clever recently, I've been teaching him to knock over a tower of cups when he is side lying during his brainwave therapy and last week he managed to do it himself. It was a very slow process for him and he was concentrating so hard that he was grinding his teeth and dribbling everywhere but very slowly he managed to move his arm over to the cups and slowly knock em over. We've been practicing every morning and he is managing it about 3 or 4 times in a row now. Don't get over excited by this news, it is brilliant but by no means is it easy for him, it's a massive effort for him and he finds it so hard but once he manages it he seems very pleased with himself!
He has progressed loads when lying in prone (on his front) over his wedge. When we first started the brainwave programme he would extend as soon as he was on his front and would banana right backwards. Now he can weight bear on his hands for a while and will keep his head down looking at a book or a toy for quite some time. When we first started I had to be behind him holding him but now he can balance much better so I can come to the side to play with some toys with him which is amazing. Still working on getting him to turn his head to the right as he is always turned to the left but that is also related to his loss of vision on the right hand side.
He has also been playing peek-a-boo with some silver paper and a sensory scarf, lying on his back and he will try very hard to bring it over his face, he still needs a it of help to start with but nice we've done it a few times he tries even harder and will bring his arms down most times to reveal himself!
Still not getting anywhere with standing frame issues, think everyone has forgotten about it to be honest so William is still not standing which isn't good for his hip development. Will have to kick up a fuss soon I expect.
I've just read a brilliant book about a mum whose little boy had cerebral palsy, I would recommend it to anyone who wants to get an insight into the lives of families like ours it is so true to life. It's called Blue Sky July but make sure you have some tissues ready as it is a very emotional read!
Don't forget to check out the website for all our events coming up - this week it's our charity auction with Ian Towning as our auctioneer (Ian is a dealer on ITVs Dickinsons Real Deal) and we also have live music from Terry Winstanley (X Factor) and Mick Short! Looks set to be an amazing evening!
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