It's been awhile since I have posted. I do feel quite guilty now.
When Ellie was having so many seizures I was constantly posting new messages and getting a big response.
Now I forget sometimes that Ellie has Epilepsy.
In 3 weeks time it will be a whole year Ellie has gone without having a seizure.
Ellie has done really really well and we have really relaxed around her now.
Last month Ellie was really poorly with tonsilitus and fever, last year if she had been ill she would have had god knows how many seizures.
Touch wood she got through the illness without even a hand or eye trembling.
This is just such a relief to us that the seizures seemed to have gone and Ellie's body is able to deal with what ever it couldn't before.
Ellie started full time school in September and the first few weeks Ellie found hard.
It was a really long day she was bringing home lots of homework and she had to learn to settle in and deal with the school day.
At first this was a little concerning for us as this was another factor that used to cause the seizures tiredness but again Ellie has been coping really well.
I feel for Ellie at the moment though, with all her other health conditions she has to have hormone tablets 3 times a day Levothyroxine.
At the moment the school will not take responsibilty for giving this to Ellie at lunch time.
So every day I have to go to the school at 12pm and wait for Ellie to come out of assembly and give her her tablet.
This is a real strain on myself and is Shayni Ellie's younger sister. It is also singling out Ellie and highlighting the fact that she has health conditions that I can not control.
I don't shout from the roof top about Ellie's Health and never use it as an excuse but this was the reason that Ellie got into the school as I appealed on medical grounds.
The school community nurse is worknig with me and created a care plan but we are waiting for the head teacher to finally give the go ahead.
This takes 20 mins of my day and would take a second of the schools day.
Hopefully the new year will bring some good news on this matter.
I would like to wish every one a very MERRY CHRISTMAS & A HAPPY NEW YEAR.
My thoughts are with anyone out there who has been through or is going through what we have been through.
Sunday, 21 December 2008
Saturday, 9 August 2008
Ellie Churchill, this was the story a year ago.......
I have just reposted this post to show how far Ellie Churchill has come in a year, fingers crossed the Epilim is doing it's job correctly and Ellie will continue seizure FREE.
Ellie had her first a fit (seizure) when she was 11 months old. Ellie began to stare directly into the corner of the room she went blue around the lips, she stopped breathing and brown liquid came from her nose. At which point I phoned the emergency doctor and was told over the phone that she had an infection and to make sure I kept her well hydrated. The next day she was absolutely fine back to normal like nothing had happened.
That was it until the day after her second birthday January 2006 the same thing happened that had happened when she was 11 months old. This time I got an emergency appointment and rushed her straight to the Doctors. On seeing the doctor he examined her and told me I needed to get Ellie to A & E, he said she had bronchioto pneumonia on both her lungs and said she was a very sick little girl. She was laying in my arms completely out of it. SHe had come round from the fit but it had made her very sleepy.
I rushed her to the lister hospital in Stevenage where there was 9 doctors on call waiting for us, they then instructed trauma and resus to stand by. Me and my partner felt so helpless standing watching her laying on the hospital bed, They were taking bloods from her they begun to pump adrenalin into her. (at this point I was also three months pregnant with my second daughter Shayni.)
We were kept in hospital for the next 6 days and Ellie continued to have these fits where she stared stright to the ceiling and then her lips went blue then the whole of her face and the brown liquid came from her nose. She had a total of 7 fits in the 6 days in hospital and on 3 of the occassions they had to give her rectal diazipam to try to help calm Ellie and stop her from fitting. Ellie spent most of the 6 days days wired up to machines with a drip in her arm. She was completely out of it, she slept most of the time and when she was awake she made little sense.
At this point they also tried to do a lumber puncture as they had to rule out every kind of menigitus. But Ellie put up a huge fight they had 3 Doctors and 3 nurses in with Ellie and she could not be held still enough to carry out this test.
After 6 days the Doctors and consultants were at a complete loss as to what was wrong with Ellie she had made a huge recovery and was back to normal apart from being very tired and having tons of needle marks in her arms and legs where she was in hospital for so long. Her veins kept blocking with the amount of drungs they were pumping into her.
We had no diagnosis at this point and was told that Ellie probaly had a viral infection, although they were going to do a follow up.After leaving hospital she went on to have more fits, and we were rushed back to hospital a week later.
Again there was no evidence of Ellie being unwell, no ear infection, nothing on her thoat, again we were told it was probably another viral infection. In the next month Ellie had 2 more fits and the hospital had referred her to Addenbrookes Hospital in cambridge. The appointment came through for March, we went up to Addernbrookes and saw a consultant. The lister hospital thought that the fits may have something to do with low blood sugar levels.
Addenbrookes arranged for us to take Ellie into hospital 2 weeks later as they were going to carry out a controlled fit. They were going to let her blood sugar levels drop and take bloods to see if they could find the cause of the fits.The test was supposed to take around 24 hours, however after starving Ellie for eight hours she begun to have a fit in the hospital before the Doctors thought she would have had one.
They took all the bloods they needed and we ended up staying in Addenbrooks for 3 nights instead of just the one. Ellie had 3 more fits that day in hospital.On the 4th days we were released and had to wait to get the results of the tests.
We were told that we were not allowed to let Ellie go longer than 8 hours of a night sleeping and had to wake her at silly times in the morning to give her a bottle of hot chocolate to ensure her sugar levels didn't get to low.
2 weeks later we got the results.
Ellie has an undersized pituitary gland.Straight away we had to start medication. We had to give Ellie Hydocortisone 3 times a day to replace her adrenalin gland that her brain is not producing.She has to have Thyroxine once a day because she has an under active thyroid.She has to have an injection every night because she has a low growth hormone (at 3 years now, she will be 4 in January she is only 90cm).
The doctors seem to think this was the cause of the fits and said now that they know what is wrong and she is on medication the fits will stop. They also said that there was no link to the fits being because of low sugar levels.But the fits carried on sometimes 3 or 4 a week sometimes nothing.
They arranged for a EEG at Addenbrookes last July (2006) and the results were normal.
We then took Ellie for an MRI scan at Addenbrookes in August (2006) and there was no abnormalities either.
Since August, Ellie has been suffering with these fits and I seemed to link them to when she had a viral infection. She was taken to hospital another 5 times and every time she was in the hospital I had a cold sore and seem to think this is a link to her fits.
We have an emergency regime, to increase her hydrocortone if she is ill and if she has a fit we had a gluco drink to give her to increase her sugar levels.We have been out of our mind, myself my partner and all our family. These fits come from no where at all, one minute she is fine the next minute she is in the recovery position going blue..
In March this year Ellie had serious sickness and she had a fit on our sofa for 45 minutes, we called the ambulance and they gave her diazipam to try to stop the fit, once under control they took us straight to A & E where Ellie begun to have another fit. She continued to fit in A & E for 1hr and half. The doctors couldn't get her to stop even giving her diazipam.
Every time Ellie fits I panick, I know all the doctors and nurses say there is no harm but every one knows that a shortage of oxygen to the brain can cause damage.
However in March, Ellie's fits turned into vacant stares and the episodes seem to be all right side. Ellie's right eye and the right side of her mouth twitched, her right arm would go stiff. Ellie seemed like she could hear us, but she would stare straight infront of her. These seem to last about 30 seconds to 1 minute.
These were completely different to the fits we had experienced where Ellie went blue and stopped breathing.These became very frequent after leaving hospital in March this year. We were experiencing these every other day.
At no point have the Doctors or consultants thought Ellie had Epilepsy even though myself and my partner both have family members who suffer with epilepsy.
This has become a big part of a daily life, not only do we have to carry a medicine bag around with all of Ellies medication, the family are scared to look after Ellie incase she has a fit. In June the condition got worse, Ellie had 28 seizures in 3 weeks. We got referred to the neurologist who sent us for another EEG which again showed no abnormalities. The Doctors kept saying that they did not want to start Ellie on any Anti - convulsion medication because once they start it she would have to be on it for at least 2 years and also the medication can give in-accurate results on tests.
However the fits kept coming and I was finding it increasingly difficult to get out the house. I would take ELlie and Shayni to the park and Ellie would have a fit in the park and obviously my attention would be all on Ellie and it would be a danger tomy one year old Shayni. Ellie had 3 fits whilst shoppingin Tesco. They were coming every day thick and fast.
We went back and the consultant decided to start Anti-convulsion medication and prescribed Tegretol.
2 weeks later we had another EEG and this time it showed an abnormality and they said that Ellie has epilepsy.I find it strange that she had 2 EEG and a MRI and there was no abnormality as soon as she started the anti convulsion the EEG result showed abnormalities.
The fits seemed to disappear but then we were told to increase her medication and the fits came back every day.
6 weeks ago Ellie was rushed to hospital by ambulance because her whole body was shaking and she went blue and stopped breathing.We were let out that night, and then we were given another anti-convulsion medication Epilim. Ellie is now on both medications because you can't just stop you need to be weaned off of them.
The fits have still been coming every day, sometimes 3 times a day.
Last monday she had a fit which lasted 14 minutes her whole body was shaking, she went blue and stopped breathing we went to Hospital by ambulance and kept in over night because she had another 3 in hospital and had to be given rectal diazipam.
Again this time, I had yet another cold sore and there was no visible infection.Since coming out 7 days ago she has had another 4 fits.
She is due to start nursery this thursday and obviously they are concerned for her safety, and at the frequency she is having these fits.
They even suggested that she should wear a crash helmet whilst at nursery.
This has been going on for nearly 2 years now and i'm not sure that the Doctors have made a correct diagnosis.
This is a huge thing that is going on in our life and I really feel for my daughter, she is only 3 I wish I could take them away from her.
You feel so useless and you don't get given enough information, it is a case of dealing with it.
Ellie has been having these fits for nearly 2 years now on a daily basis and it doesn't get any easier.
I always wonder whether if its her last breath as she goes blue!!It is so horrible, I feel at the end of the line and would just like to talk to other people that know what I am going through.
Any comments and information will be gladly received.
Wednesday, 6 August 2008
Ellie's Epilepsy
Been awhile again since I last posted about Ellie's progress.
Quite a different story this year so far Ellie's last Seizure was on the 1st January 2008, 7 months without a slight trmble of her hand, any blinking of her eyes.
I can't believe Ellie is the same girl.
She has made such good progress and we are all so pleased with the positive change in her Epilepsy.
Ellie went to hospital last week for her 6 month check up and they are also very pleased with the Epilepsy being under control.
Ellie has gone from having anything from 18 Seizures a day to 0.
I know I musn't speak to soon but feel like we are on a home run at the moment. I am aware that Ellie has to go 2 years without any Seizures at all before the Doctors will consider taking Ellie off of the Epilepsy Medication.
At Ellie's consultation last week the Doctors had said they were intending to increase the Epilim dose that Ellie is currently taking. Ellie has 4mls in the morning and 4mls in the evening.
As Ellie hasn't had a Seizure for 7 months now the consultants have said that they want to keep her on the same dose for the time being.
Ellie's last increase in medication was December, so Ellie's consultants have advised that the Seizures could be being kept under control because they have finally got the right amount of medication that Ellie needs to control the Seizures.
Or Ellie may have grown out of the Seizures.
At the moment no one can be sure what the reason for the Seizures disappearing and it is a case of waiting and see what the future holds.
If Ellie has a Seizure we have to inform the hospital immediately and they will then increase the Epilim medication. As long as Ellie doesn't have a Seizure we will go for a follow up appointment which is in January 2009.
It is such a positive thing as Ellie's Epilepsy really did control us all as a family and was restricting us to go about our daily activities as freely as we wanted.
I have become very relaxed around Ellie now, I always used to shout out every few minutes if we werent in the same room and constantly check on Ellie but now I don't find myself calling out as much as I did.
Ellie has settled in really well to Sheredes Primary School and is due to start Reception in September 2008 as I was fortunate to gain Ellie a place after haing to appeal to the local council as the school was over subscribed.
Ellie is also doing extremely well with her Growth Hormone Injection, she is responding well to the treatment and has gained just over 3cm in 4 months which is a huge progress for Ellie she has now moved up to the 95th centile line on the growth chart all her years development she has never been on a line.
I was informed by the Doctors that Ellie's height and weight are both in proportion and she is what they would suggest is average for a 3 1/2 year old. Obviously Ellie is 4 1/2 years old, and some of the children in her class are the same height as Ellie so her height still isn't a huge concern. She is getting her Growth Hormone everynight and is developing extremely well.
Quite a different story this year so far Ellie's last Seizure was on the 1st January 2008, 7 months without a slight trmble of her hand, any blinking of her eyes.
I can't believe Ellie is the same girl.
She has made such good progress and we are all so pleased with the positive change in her Epilepsy.
Ellie went to hospital last week for her 6 month check up and they are also very pleased with the Epilepsy being under control.
Ellie has gone from having anything from 18 Seizures a day to 0.
I know I musn't speak to soon but feel like we are on a home run at the moment. I am aware that Ellie has to go 2 years without any Seizures at all before the Doctors will consider taking Ellie off of the Epilepsy Medication.
At Ellie's consultation last week the Doctors had said they were intending to increase the Epilim dose that Ellie is currently taking. Ellie has 4mls in the morning and 4mls in the evening.
As Ellie hasn't had a Seizure for 7 months now the consultants have said that they want to keep her on the same dose for the time being.
Ellie's last increase in medication was December, so Ellie's consultants have advised that the Seizures could be being kept under control because they have finally got the right amount of medication that Ellie needs to control the Seizures.
Or Ellie may have grown out of the Seizures.
At the moment no one can be sure what the reason for the Seizures disappearing and it is a case of waiting and see what the future holds.
If Ellie has a Seizure we have to inform the hospital immediately and they will then increase the Epilim medication. As long as Ellie doesn't have a Seizure we will go for a follow up appointment which is in January 2009.
It is such a positive thing as Ellie's Epilepsy really did control us all as a family and was restricting us to go about our daily activities as freely as we wanted.
I have become very relaxed around Ellie now, I always used to shout out every few minutes if we werent in the same room and constantly check on Ellie but now I don't find myself calling out as much as I did.
Ellie has settled in really well to Sheredes Primary School and is due to start Reception in September 2008 as I was fortunate to gain Ellie a place after haing to appeal to the local council as the school was over subscribed.
Ellie is also doing extremely well with her Growth Hormone Injection, she is responding well to the treatment and has gained just over 3cm in 4 months which is a huge progress for Ellie she has now moved up to the 95th centile line on the growth chart all her years development she has never been on a line.
I was informed by the Doctors that Ellie's height and weight are both in proportion and she is what they would suggest is average for a 3 1/2 year old. Obviously Ellie is 4 1/2 years old, and some of the children in her class are the same height as Ellie so her height still isn't a huge concern. She is getting her Growth Hormone everynight and is developing extremely well.
Wednesday, 23 April 2008
Ellie's Progress
Hello Everyone
It has been awhile I know what with moving home in january we have not had access to the internet but hey were back online again.
Just wanted to let you know the great progress Ellie is making at the moment.
She is currently on 4ml of Epilim morning and night and touch wood Ellie has not had a seizure since the 1st January 2008.
It is like a miracle. We are so much more relzxed around her now, not constantly watching over her.
We think along with Ellie's consultant that the move to the new home and starting a new school has relaxed Ellie.
Ellie has settled into her new nursery very well and is developing so much, she is learning lots of new things and made some great little friends.
Although it's not all a bed of roses, because we moved in January it was right in the middle of school reception allocation places and Ellie was allocated her first choice school back in the area that we moved from.
I put Ellie's name down on the continuing interest for her new school Sheredes and they had 60 places available and unfortunately for us all 60 places were allocated.
We are desperate to get Ellie a place for september as we feel if we have to move her to yet another school it may affect her Epilepsy.
We have got an appeal on the 1st of May to state our case and we are appealing on the grounds of Ellie's health conditions.
All of Ellie's consultants have wrote letters in support of our appeal so fingers crossed we should be able to secure a place. We find out 2 weeks after the appeal date.
Hope everyone is well.
Dee
xx
It has been awhile I know what with moving home in january we have not had access to the internet but hey were back online again.
Just wanted to let you know the great progress Ellie is making at the moment.
She is currently on 4ml of Epilim morning and night and touch wood Ellie has not had a seizure since the 1st January 2008.
It is like a miracle. We are so much more relzxed around her now, not constantly watching over her.
We think along with Ellie's consultant that the move to the new home and starting a new school has relaxed Ellie.
Ellie has settled into her new nursery very well and is developing so much, she is learning lots of new things and made some great little friends.
Although it's not all a bed of roses, because we moved in January it was right in the middle of school reception allocation places and Ellie was allocated her first choice school back in the area that we moved from.
I put Ellie's name down on the continuing interest for her new school Sheredes and they had 60 places available and unfortunately for us all 60 places were allocated.
We are desperate to get Ellie a place for september as we feel if we have to move her to yet another school it may affect her Epilepsy.
We have got an appeal on the 1st of May to state our case and we are appealing on the grounds of Ellie's health conditions.
All of Ellie's consultants have wrote letters in support of our appeal so fingers crossed we should be able to secure a place. We find out 2 weeks after the appeal date.
Hope everyone is well.
Dee
xx
Saturday, 15 December 2007
FEBERAL CONVULSIONS WITH CHICKEN POX
It all started over a week ago the girls had a bad cough and I took the girls to the doctors and they gave them antibiotics.
Then last saturday Ellie had a febral convulsion and when the ambulance came they took her to hospital and she had yet another febral convulsion and they kept her in for about 5 hours and we had to keep her temp under control with calpol and ibuprofin.
Then monday Ellie came up in a rash on her arms and the NHS Direct said to keep an eye on her and if it hadn't improved in the morning take her to the doctors.
We had to take Ellie for her sleep EEG tuesday morning and Lee's sister came down to have Shayni.
Shayni had a rash on her thighs and around her bottom and we weren't sure whether or not it was a nappy rash or not.
We went to the hospital and luckily Ellie did fall asleep for 20 minutes, she went into stage 4 of the sleep process and they got a very good reading.
We were on our way back when Lee's sister phoned and said that Shayni had had a fit and was lifeless.
I told her to call an ambulance and luckily we were only 5 mins away from our house.
As it turned out Shayni had had a febral convulsion aswell, she had been suffering with high temperature the night before and that morning.
The paramedics decided that they should take Shayni into hospital to get her checked out.
Ellie was going off to the Doctors to get her rash sorted out.
When we got to the hospital Shayni was very quiet and the rash was very viscious and there was more spots appearing.
The registrar looked and didn't know what it was and then 2 doctors came in and they were still unsure.
They said it could be chicken pox, (which it did look like) or it could be impatigo.
Then another consultant came in and diagnosed Shayni with Herpetic rash and prescribed zovirax oral medication (5 x a day). They said that it was very contagious.
We brought Shayni home and she was very quiet.
The Doctor said that Ellie's rash was nothing to worry about and it has completely gone.
After 2 days of Shayni being on the zovirax medication there were new spots appearing, on Shayni's knees, feet, hands, legs and arms. They were very red and were blistering, weeping and scabbing over.
I called the Doctors straight away and they told me to bring her straight in.
As soon as the nurse looked at Shayni she said she had Chicken Pox.
Which is what I suspected it was.
Touch wood Ellie has no signs of Chicken Pox but there is still time.
Shayni's spots have stopped coming up now, but she is still itching and restless.
I am just hoping and praying that Ellie doesn't come out in the spots next week.
We only have 9 days till we go to Disneyland Paris.
I am still waiting for the results of the sleep EEG hopefully we should get them this week.
Then last saturday Ellie had a febral convulsion and when the ambulance came they took her to hospital and she had yet another febral convulsion and they kept her in for about 5 hours and we had to keep her temp under control with calpol and ibuprofin.
Then monday Ellie came up in a rash on her arms and the NHS Direct said to keep an eye on her and if it hadn't improved in the morning take her to the doctors.
We had to take Ellie for her sleep EEG tuesday morning and Lee's sister came down to have Shayni.
Shayni had a rash on her thighs and around her bottom and we weren't sure whether or not it was a nappy rash or not.
We went to the hospital and luckily Ellie did fall asleep for 20 minutes, she went into stage 4 of the sleep process and they got a very good reading.
We were on our way back when Lee's sister phoned and said that Shayni had had a fit and was lifeless.
I told her to call an ambulance and luckily we were only 5 mins away from our house.
As it turned out Shayni had had a febral convulsion aswell, she had been suffering with high temperature the night before and that morning.
The paramedics decided that they should take Shayni into hospital to get her checked out.
Ellie was going off to the Doctors to get her rash sorted out.
When we got to the hospital Shayni was very quiet and the rash was very viscious and there was more spots appearing.
The registrar looked and didn't know what it was and then 2 doctors came in and they were still unsure.
They said it could be chicken pox, (which it did look like) or it could be impatigo.
Then another consultant came in and diagnosed Shayni with Herpetic rash and prescribed zovirax oral medication (5 x a day). They said that it was very contagious.
We brought Shayni home and she was very quiet.
The Doctor said that Ellie's rash was nothing to worry about and it has completely gone.
After 2 days of Shayni being on the zovirax medication there were new spots appearing, on Shayni's knees, feet, hands, legs and arms. They were very red and were blistering, weeping and scabbing over.
I called the Doctors straight away and they told me to bring her straight in.
As soon as the nurse looked at Shayni she said she had Chicken Pox.
Which is what I suspected it was.
Touch wood Ellie has no signs of Chicken Pox but there is still time.
Shayni's spots have stopped coming up now, but she is still itching and restless.
I am just hoping and praying that Ellie doesn't come out in the spots next week.
We only have 9 days till we go to Disneyland Paris.
I am still waiting for the results of the sleep EEG hopefully we should get them this week.
Wednesday, 7 November 2007
Travel Insurance For People with Epilepsy
I am so angry and disgusted that I am finding it extremely hard to find travel insurance for Ellie.
We have booked our trip to Disneyland Paris at Christmas. With only 7 weeks to go I went online to buy our Travel Insurance.
I didn't realise it was going to be so hard.
At first I tried Tesco and they said that they couldn't insure Ellie because of her Epilepsy.
I went on to the Epilepsy Action Website and they recommend a company called ACE who deal with Travel Insurance for people with Epilepsy.
However after phoning them they said they could not provide Travel Insurance for Ellie because her Epilepsy wasn't under control.
I have been searching the net for a couple of days now and I came across a company and when the quote flashed up on my screen I nearly fell off my chair, £858.00.
The price is nearly as much as our holiday!
At the end of the day, Ellie needs insurance and there is no way I would travel with Ellie without it.
I have already got our European Health Cards, which will entitle us to FREE or discounted emergency treatment shoudl we need it. But these are not insurance and we do need insurance.
I have today found a company called Free Spirit Travel Insurance Free Spirit Travel Insurance and they will Insure Ellie. They came up with a quote for £148.00, which is a huge difference from the first company I found on the internet.
It is bad enough my 3 year old has Epilepsy that is controlling her day-to-day life, but being penalised by Travel Insurance Companies has made me so angry.
All they want to do is take people's money.
We have booked our trip to Disneyland Paris at Christmas. With only 7 weeks to go I went online to buy our Travel Insurance.
I didn't realise it was going to be so hard.
At first I tried Tesco and they said that they couldn't insure Ellie because of her Epilepsy.
I went on to the Epilepsy Action Website and they recommend a company called ACE who deal with Travel Insurance for people with Epilepsy.
However after phoning them they said they could not provide Travel Insurance for Ellie because her Epilepsy wasn't under control.
I have been searching the net for a couple of days now and I came across a company and when the quote flashed up on my screen I nearly fell off my chair, £858.00.
The price is nearly as much as our holiday!
At the end of the day, Ellie needs insurance and there is no way I would travel with Ellie without it.
I have already got our European Health Cards, which will entitle us to FREE or discounted emergency treatment shoudl we need it. But these are not insurance and we do need insurance.
I have today found a company called Free Spirit Travel Insurance Free Spirit Travel Insurance and they will Insure Ellie. They came up with a quote for £148.00, which is a huge difference from the first company I found on the internet.
It is bad enough my 3 year old has Epilepsy that is controlling her day-to-day life, but being penalised by Travel Insurance Companies has made me so angry.
All they want to do is take people's money.
Monday, 5 November 2007
Another week of seizures
It all started last tuesday, Ellie had a Epilepsy seizure on the way to school, she was sitting in the pram and when I looked her right arm was stiff holding it in the air Ellie's eyes were staring to the right hand side and her mouth was twitching. The whole episode lasted for about 2 minutes.
Ellie came round and was a bit dazed but still wanted to go to school, so we continued with our journey.
I left Ellie at the nursery door at 9am and went on my way, she was happy enough and went staright in without a single glance back.
11:30am and time for Ellie to come out of school, Mrs Priyor came out and said to me that Ellie had had another Epilepsy Seizure in school. She told me it only lasted about 1 minute or so and they laid Ellie on the carpet, she came round and was very dazed for about 10 minutes after. They said they suspected something wasn't quite right as Ellie was very quiet in school that morning and it wasn't normal for her.
The children begun to come out of the classroom, Ellie came out and run straight up to me, she handed me her book bag and coat and went back to get herself a snack from the snack box, on returning she was shouting "mummy I had a fit".
Then again like a flash of light she went again, Her arm stiff lifting it into the air, her eyes staring to the right and her mouth twitching. I fell to the ground and laid Ellie on her side on my lap. The whole thing lasted for around a minute and a half and Ellie was back, very quiet, a little upset and she got in teh pram and wanted to lay down.
Ellie's little sister had been suffering with the afffects of a cold for 2 weeks and we had an appointment at 11:45 at the Doctors surgery so we made out way to the surgery.
We arriveed at teh surgery and were sitting waiting in the waiting room, I had bought the girls a packet of Hula Hoops each adn they were sitting on the chair eating them.
It was 12:15pm when Ellie called "Mummy" I looked at her and realised she was about to have yet another Epilepsy seizure, so I picked her up and laid her on the sofa in the waiting room, I sat with Ellie holding her hand and calling her as I normally do.
Then Ellie begun to go blue and her lips, then she took a big breath in and stopped breathing, there was a couple siting next to us and in a panick I screamed "GET A DOCTOR", and was shaking Ellie saying "PLEASE BREATH, PLEASE DARLING COME BACK".
The receptionist run to get a doctor and within seconds there was 3 nurses and our GP Dr Davies.
Ellie gave a cough and begun to breath again again, she was still completely out of it and was still having some sort of seizure.
The doctor told me to take her to a room so I picked Ellie up and carried her to the Doctors room, on picking Ellie up I realised that she had released herself, this is very very unusual for Ellie. I laid her on the bed and the nurse gave Ellie some oxygen.
Dr Davies rung for an ambulance.
The staff at teh surgery were so so helpful and I really grateful, they took control of poor Shayni because like normal she gets pushed aside.
There was 5 nurses and the Doctor in the room and the paramedic turned up.
Ellie seemed to come round and was shouting "I don't like you, leave me alone".
The she seemed like she had another Epilepsy seizure it only lasted for a minute but she was staring and her mouth was twitching.
Although she was completely out of it. She laid on the bed and went off to sleep.
The ambulance turned up and they took us to the QEII in Welwyn Garden City.
It was a nightmare, I was all alone, with Ellie and Shayni, my phone had completely died and I couldn't get in touch with anyone.
Shayni looked petrified, sitting on the huge seat in the Ambulance the sirens were going and Ellie was very very upset.
We arrived at A & E to find around 15 Doctors waiting for Ellie including resus. They were obviously expecting the worse.
They carried out all the normal tests, blood sugar, urine etc etc.
The only thing they could find was Ellie had red tonsils and a little big enlarged but there was no pussing.
They were convinced this seizure was caused by a viral infection, it was clear Shayni had a viral infection and both Ellie and Shayni share a bedroom but with all the coughs and colds around at the moment Ellie may have picked something up at school.
We were kept in till about 7pm and then let home.
Ellie was very tired and didn't sleep well, so she didn't go to school on the Wednesday.
Friday morning Ellie was up at 4am and she had a small seizure sitting on the sofa she was very tired and didn't look to great, we had been given a course of anitibiotics, so I thought it best to keep her at home.
Saturday afternoon around 4pm we were getting ready to go out for something to eat and to go to the play area, when all of a sudden we heard a huge crash.
Ellie was haing another Epilepsy seizure, she had fallen over in the kitchen and she hit her head on the dust bin, Ellie was lucky the bin was there otherwise she would have hit her head on the corner of the skirting board.
Ellie had obviously hurt herself because she was crying a little bit, but again her right arm was stiff, her eyes were staring to the right and her mouth was twitching, the whole episode lasted 3 minutes.
Ellie came round from the Epilepsy Seizure and had no feeling in her right arm what so-ever, she was very distressed. She couldn not speak to us and she was dribbling.
After 10 minutes Ellie begun to move her fingers and seemed to be back to normal she as able to communicate with us again.
Then today monday we were already to go off to school and Ellie was sitting in the back of the car in her car seat, we were playing the spelling game that Ellie loves to play and she asked me how she spelt bedroom.
I begun to spell with her then we got to the letter R and Ellie didn't answer me, I turned to look at her and Ellie was having another Epilepsy Seizure in the car seat. I pulled over as soon it was safe to do so, Ellie's right are was stiff and she was holding it in the air, her fingers were clenched into a fist, her mouth was twitching and her eyes were staring to the right I kept calling to Ellie, she went a funny shade of blue and then after 3 minutes she turned her head to look at me. Ellie wasn't able to talk to me for another 3 minutes or so and Ellie was dribbling.
Ellie's eyes were very glassy, she became very quiet and just staring out of the window, Ellie also sounded as though she had the worse cold in the world. I really didn't think it was appropriate to send Ellie to school. so we came back home.
Another day she is missing out on.
Since being home Ellie has been quiet, she has been sitting quietly on the sofa and she keeps staring like she isn't in the room with us.
Ellie is still on 2ml of Epilim day and night we are going to the QEII on wednesday morning to see Ellie's consultant I really think something needs to be done, Ellie really can't lead a normal every day life at the moment.
We don't even know what form of Epilepsy Ellie has.
Ellie came round and was a bit dazed but still wanted to go to school, so we continued with our journey.
I left Ellie at the nursery door at 9am and went on my way, she was happy enough and went staright in without a single glance back.
11:30am and time for Ellie to come out of school, Mrs Priyor came out and said to me that Ellie had had another Epilepsy Seizure in school. She told me it only lasted about 1 minute or so and they laid Ellie on the carpet, she came round and was very dazed for about 10 minutes after. They said they suspected something wasn't quite right as Ellie was very quiet in school that morning and it wasn't normal for her.
The children begun to come out of the classroom, Ellie came out and run straight up to me, she handed me her book bag and coat and went back to get herself a snack from the snack box, on returning she was shouting "mummy I had a fit".
Then again like a flash of light she went again, Her arm stiff lifting it into the air, her eyes staring to the right and her mouth twitching. I fell to the ground and laid Ellie on her side on my lap. The whole thing lasted for around a minute and a half and Ellie was back, very quiet, a little upset and she got in teh pram and wanted to lay down.
Ellie's little sister had been suffering with the afffects of a cold for 2 weeks and we had an appointment at 11:45 at the Doctors surgery so we made out way to the surgery.
We arriveed at teh surgery and were sitting waiting in the waiting room, I had bought the girls a packet of Hula Hoops each adn they were sitting on the chair eating them.
It was 12:15pm when Ellie called "Mummy" I looked at her and realised she was about to have yet another Epilepsy seizure, so I picked her up and laid her on the sofa in the waiting room, I sat with Ellie holding her hand and calling her as I normally do.
Then Ellie begun to go blue and her lips, then she took a big breath in and stopped breathing, there was a couple siting next to us and in a panick I screamed "GET A DOCTOR", and was shaking Ellie saying "PLEASE BREATH, PLEASE DARLING COME BACK".
The receptionist run to get a doctor and within seconds there was 3 nurses and our GP Dr Davies.
Ellie gave a cough and begun to breath again again, she was still completely out of it and was still having some sort of seizure.
The doctor told me to take her to a room so I picked Ellie up and carried her to the Doctors room, on picking Ellie up I realised that she had released herself, this is very very unusual for Ellie. I laid her on the bed and the nurse gave Ellie some oxygen.
Dr Davies rung for an ambulance.
The staff at teh surgery were so so helpful and I really grateful, they took control of poor Shayni because like normal she gets pushed aside.
There was 5 nurses and the Doctor in the room and the paramedic turned up.
Ellie seemed to come round and was shouting "I don't like you, leave me alone".
The she seemed like she had another Epilepsy seizure it only lasted for a minute but she was staring and her mouth was twitching.
Although she was completely out of it. She laid on the bed and went off to sleep.
The ambulance turned up and they took us to the QEII in Welwyn Garden City.
It was a nightmare, I was all alone, with Ellie and Shayni, my phone had completely died and I couldn't get in touch with anyone.
Shayni looked petrified, sitting on the huge seat in the Ambulance the sirens were going and Ellie was very very upset.
We arrived at A & E to find around 15 Doctors waiting for Ellie including resus. They were obviously expecting the worse.
They carried out all the normal tests, blood sugar, urine etc etc.
The only thing they could find was Ellie had red tonsils and a little big enlarged but there was no pussing.
They were convinced this seizure was caused by a viral infection, it was clear Shayni had a viral infection and both Ellie and Shayni share a bedroom but with all the coughs and colds around at the moment Ellie may have picked something up at school.
We were kept in till about 7pm and then let home.
Ellie was very tired and didn't sleep well, so she didn't go to school on the Wednesday.
Friday morning Ellie was up at 4am and she had a small seizure sitting on the sofa she was very tired and didn't look to great, we had been given a course of anitibiotics, so I thought it best to keep her at home.
Saturday afternoon around 4pm we were getting ready to go out for something to eat and to go to the play area, when all of a sudden we heard a huge crash.
Ellie was haing another Epilepsy seizure, she had fallen over in the kitchen and she hit her head on the dust bin, Ellie was lucky the bin was there otherwise she would have hit her head on the corner of the skirting board.
Ellie had obviously hurt herself because she was crying a little bit, but again her right arm was stiff, her eyes were staring to the right and her mouth was twitching, the whole episode lasted 3 minutes.
Ellie came round from the Epilepsy Seizure and had no feeling in her right arm what so-ever, she was very distressed. She couldn not speak to us and she was dribbling.
After 10 minutes Ellie begun to move her fingers and seemed to be back to normal she as able to communicate with us again.
Then today monday we were already to go off to school and Ellie was sitting in the back of the car in her car seat, we were playing the spelling game that Ellie loves to play and she asked me how she spelt bedroom.
I begun to spell with her then we got to the letter R and Ellie didn't answer me, I turned to look at her and Ellie was having another Epilepsy Seizure in the car seat. I pulled over as soon it was safe to do so, Ellie's right are was stiff and she was holding it in the air, her fingers were clenched into a fist, her mouth was twitching and her eyes were staring to the right I kept calling to Ellie, she went a funny shade of blue and then after 3 minutes she turned her head to look at me. Ellie wasn't able to talk to me for another 3 minutes or so and Ellie was dribbling.
Ellie's eyes were very glassy, she became very quiet and just staring out of the window, Ellie also sounded as though she had the worse cold in the world. I really didn't think it was appropriate to send Ellie to school. so we came back home.
Another day she is missing out on.
Since being home Ellie has been quiet, she has been sitting quietly on the sofa and she keeps staring like she isn't in the room with us.
Ellie is still on 2ml of Epilim day and night we are going to the QEII on wednesday morning to see Ellie's consultant I really think something needs to be done, Ellie really can't lead a normal every day life at the moment.
We don't even know what form of Epilepsy Ellie has.
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