Wednesday 26 December 2012
Saturday 22 December 2012
video - useful to know seizures come in all different forms
Hallie's first seizure on Monday 17 December 2.20pm. She is 7 months old. Her seizures start in her left foot and move quickly up her left leg into her torso and then into her left arm. They last approximately 5 to 10 minutes. Hallie only has unilateral port wine stain on her brain (the right side only) affecting the frontal and parietal lobes.
Going home!
I'm very happy to say we have managed to get out of hospital for Christmas! And Hallie's christening tomorrow : ) I had planned a Christmas going back and forth between Hallie in hospital and Isaac and Seth at home (which I would have made work as you have to work with whatever situation you are presented with) but having Hallie at home Christmas Day is something I certainly won't be taking for granted.
After being nervous about the doctors and nursing staff at the beginning of Hallie's admission, I have left feeling a lot more positive and the nurses were very caring, cheerful an attentive. I hope Hallie goes back to S2 again if she gets readmitted - although hopefully this won't be for a long while!
xxx
After being nervous about the doctors and nursing staff at the beginning of Hallie's admission, I have left feeling a lot more positive and the nurses were very caring, cheerful an attentive. I hope Hallie goes back to S2 again if she gets readmitted - although hopefully this won't be for a long while!
xxx
Friday 21 December 2012
Our stay in hospital: part 2
After my chat with the neurologist (in which I blubbed and told him I didn't mean to offend him or question his expertise, I just wanted to fight for Hallie and ensure she was looked after properly) he apologised and said he had actually treated SWS patients before which made me feel a lot better. He agreed to treat after 5mins of a seizure starting instead of 20mins, which was concerning me. But only as a one off treatment and not repeatedly every time she had a seizure in clusters as this could send her into a deep sleep and affect her breathing.
So, Hallie was given another loading dose of sodium valproate and had her carbemazepine medication increased. The neurologist told me he was increasing Hallie's carbemazepine much faster than he normally would to try and get on top of the seizures.
Hallie's last seizure was 8.30am Thursday 20th - fingers and toes crossed (words of the neurologist) that the seizures are under control for now and Hallie can go home for her christening on Sunday and of course have her first Christmas at home!
So, Hallie was given another loading dose of sodium valproate and had her carbemazepine medication increased. The neurologist told me he was increasing Hallie's carbemazepine much faster than he normally would to try and get on top of the seizures.
Hallie's last seizure was 8.30am Thursday 20th - fingers and toes crossed (words of the neurologist) that the seizures are under control for now and Hallie can go home for her christening on Sunday and of course have her first Christmas at home!
Our stay in hospital
Well, it's been a long week of which half the time I haven't known what day it is or time! So, I haven't had the opportunity to update hallie's blog.
She was admitted on Monday 17 December to Sheffield Childrens Hospital. I had fed Hallie her usual bottle around 2pm and we were sat watching tv having a cuddle when I noticed Hallie wasn't kicking her leg normally, it was rhythmically twitching. I didn't panic as I have been waiting for this for the last 7 months (although I must admit I wasn't expecting it all to happen the week before Christmas!) I lay Hallie down on her change mat to have a proper look at her body. She was very happy in herself as she lay on her mat watching me. The twitch moved up the left side of her body and into her left arm and hand. I recorded this on my phone as evidence just in case she stopped before the ambulance arrived. I phoned 999 and explained what was happening saying my baby girl was having a seizure and that she had Sturge weber syndrome and it was her first seizure. The ambulance arrived within a few minutes and I explained all this once again to the two medics who had never heard of SWS surprise surprise and I didn't want them to think she wasn't fitting. But, even though the seizure was stopping, they could see her left side was completely paralysed so said they were going to take her in with the blue lights.
At A&E Hallie continued to fit every few minutes. I was so unbelievably worried because at this point I didn't feel they were taking the situation seriously or treating it with urgency. Hallie was fully alert and wide awake throughout her seizures - she was responding and moving her eyes following the doctor's light. Because of this, they thought she was okay and she was coming out of each seizure after a few minutes. I didn't count but I would say Hallie had approximately 10 to 15 seizures in the two hours she was in A&E. finally she was given a drug (I cannot remember which one) and she was transferred to the neuroscience ward.
Hallie was given Carbemazepine and a loading dose of sodium valproate to kick start the levels of drug in her system. The nurse explained that because little ones' livers work so efficiently they tend to get rid of the drugs really quickly out of their system so need high doses to keep levels up.
Hallie kept fitting I would say 3 to 4 times a day, each fit lasting 5-10mins - the neurologist visited a lot and I had an emotional conversation with him about my concerns that he wasn't treating aggressively enough. It was so difficult because on the one hand I didn't want my baby girl to be pumped full of all these chemicals but I also wanted to ensure she was getting the treatment she needed to prevent brain damage. The nurses were a little stubborn when I kept insisting SWS seizures needed to be treated differently to other epileptic seizures. They kept telling me they had treated many patients with epilepsy over many years to which I replied "how many children have you had on this ward with Sturge weber syndrome?!"
She was admitted on Monday 17 December to Sheffield Childrens Hospital. I had fed Hallie her usual bottle around 2pm and we were sat watching tv having a cuddle when I noticed Hallie wasn't kicking her leg normally, it was rhythmically twitching. I didn't panic as I have been waiting for this for the last 7 months (although I must admit I wasn't expecting it all to happen the week before Christmas!) I lay Hallie down on her change mat to have a proper look at her body. She was very happy in herself as she lay on her mat watching me. The twitch moved up the left side of her body and into her left arm and hand. I recorded this on my phone as evidence just in case she stopped before the ambulance arrived. I phoned 999 and explained what was happening saying my baby girl was having a seizure and that she had Sturge weber syndrome and it was her first seizure. The ambulance arrived within a few minutes and I explained all this once again to the two medics who had never heard of SWS surprise surprise and I didn't want them to think she wasn't fitting. But, even though the seizure was stopping, they could see her left side was completely paralysed so said they were going to take her in with the blue lights.
At A&E Hallie continued to fit every few minutes. I was so unbelievably worried because at this point I didn't feel they were taking the situation seriously or treating it with urgency. Hallie was fully alert and wide awake throughout her seizures - she was responding and moving her eyes following the doctor's light. Because of this, they thought she was okay and she was coming out of each seizure after a few minutes. I didn't count but I would say Hallie had approximately 10 to 15 seizures in the two hours she was in A&E. finally she was given a drug (I cannot remember which one) and she was transferred to the neuroscience ward.
Hallie was given Carbemazepine and a loading dose of sodium valproate to kick start the levels of drug in her system. The nurse explained that because little ones' livers work so efficiently they tend to get rid of the drugs really quickly out of their system so need high doses to keep levels up.
Hallie kept fitting I would say 3 to 4 times a day, each fit lasting 5-10mins - the neurologist visited a lot and I had an emotional conversation with him about my concerns that he wasn't treating aggressively enough. It was so difficult because on the one hand I didn't want my baby girl to be pumped full of all these chemicals but I also wanted to ensure she was getting the treatment she needed to prevent brain damage. The nurses were a little stubborn when I kept insisting SWS seizures needed to be treated differently to other epileptic seizures. They kept telling me they had treated many patients with epilepsy over many years to which I replied "how many children have you had on this ward with Sturge weber syndrome?!"
Monday 17 December 2012
Seizures have started
In hospital A&E - Hallie has started with seizures
She is fine in herself. The seizures started in her left foot and leg and moved rapidly into her torso and then into her left arm. They have been on and off for the past couple of hours
I will update my blog in detail later
She is fine in herself. The seizures started in her left foot and leg and moved rapidly into her torso and then into her left arm. They have been on and off for the past couple of hours
I will update my blog in detail later
Friday 7 December 2012
Thursday 6 December 2012
Marlcliffe School Christmas Fayre
Wow what an afternoon!! I haven't managed to count the money we've raised yet as every time I try my little boy Seth says he wants to "help"! But I think it's over £100 : )
We had a guess the bear's name and a lovely young boy (around 7 years old) won by guessing the name Buddy - he was very pleased
We raffled a chocolate house and I made Christmas cards and bracelets which sold well. The Marlcliffe art club Christmas cards didn't sell as well as I had thought but I will try again next week!
Hallie got sleepy half way through the Fayre and wanted a snooze bless her but the hustle and bustle was all too much. She wore her Christmas outfit especially and sat in her pram while mummy and grandma were busy on the stall.
Most importantly I managed to hand out a lot of leaflets and hopefully this will help spread awareness - I chatted to quite a few parents and explained the syndrome. The first parent I chatted to told me her son had recently passed away after having a brain tumour - this made me even more aware of how lucky I am to have Hallie in my life and how precious life is and how easily it can be taken away from us.
There were a few people who approached the stall to just give a donation without buying anything - you could see by the look on one elderly man's face that he had experienced Sturge Weber Syndrome some way in his life. All in all it was a great event and I would love to do more : )
I handed out leaflets asking parents to contact me if they would like me to organise a book party (in which I will link fundraising into the ordering of Usborne children's books)
Hallie is going on her first train journey next Tuesday, tickets are booked, we're finally off down to London to see the consultant in the specialist clinic at Great Ormond Street. I'll keep you updated on what is said.
I'm now going to have a well earned glass of wine with Graham and most likely fall fast asleep on the sofa!
X
We had a guess the bear's name and a lovely young boy (around 7 years old) won by guessing the name Buddy - he was very pleased
We raffled a chocolate house and I made Christmas cards and bracelets which sold well. The Marlcliffe art club Christmas cards didn't sell as well as I had thought but I will try again next week!
Hallie got sleepy half way through the Fayre and wanted a snooze bless her but the hustle and bustle was all too much. She wore her Christmas outfit especially and sat in her pram while mummy and grandma were busy on the stall.
Most importantly I managed to hand out a lot of leaflets and hopefully this will help spread awareness - I chatted to quite a few parents and explained the syndrome. The first parent I chatted to told me her son had recently passed away after having a brain tumour - this made me even more aware of how lucky I am to have Hallie in my life and how precious life is and how easily it can be taken away from us.
There were a few people who approached the stall to just give a donation without buying anything - you could see by the look on one elderly man's face that he had experienced Sturge Weber Syndrome some way in his life. All in all it was a great event and I would love to do more : )
I handed out leaflets asking parents to contact me if they would like me to organise a book party (in which I will link fundraising into the ordering of Usborne children's books)
Hallie is going on her first train journey next Tuesday, tickets are booked, we're finally off down to London to see the consultant in the specialist clinic at Great Ormond Street. I'll keep you updated on what is said.
I'm now going to have a well earned glass of wine with Graham and most likely fall fast asleep on the sofa!
X
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