My 3 year old daughter has been diagnosed with Epilepsy.

Hiya

Something I keep meaning to mention but I keep forgetting.

Ellie has started waking up after being put to bed any time really from 9:30pm till 5am in the morning.

She keeps telling us that she can hear a fit noise......

We ask her what this sounds like but obviously we can't get a response from her that makes sense!

As anyone ever experienced this with someone??

Does anyone actually experience this noise when sleeping????

Could it be she is having a seizure whilst she is in her bedroom???

Me and my partner do check on her regularly when she goes to bed but obviously I can't watch her 24 hours a day.

Just a little confused about what she means.

Dee xx

My little girl has seizure after seizure after seizure... starting at the age of four month (she is now almost 14 month). She has 15 seizure in 20 days. I had to push and push and push for a complete diagnost of the seizure disorder. Her seizure were all very short - less than 45-60 seconds. She was not shaking. But she turned blue, show sign that she was stopping breathing (we figure out later on that she did not... just slow down her breathing). For weeks, the Neurology Department thought is was reflux, while the GI Dr thought it was seizure. They finally agree for a long-term EEG, because they wanted to capture the "event". My little girl, at 4 month old, stayed in the hospital for 9 days.... with an EEG on her head.. .as we were all waiting for an event. She finally had one... and the diagnosis was done. She has a seizure disorder. She evening of the seizure that was capture on the EEG, she received her first dose of trileptal. It was on Feb 20 2007. She has not had a seizure since then.

The Dr run a tons of tests to see if they could find a cause for the epilepsy, and all tests came back negative. We are still being told that she might outgrow the seizure disorder, which your little one could too. When we travel, we take with us an emergency kid with medecin, in case we have to stop a seizure that would last too long. I am worry during flight.... but so far so good.

I am not sure I am helping you much here. But wanted to share my story... and wishing you good luck

Hiya Darren,

Thanks for the respomse, sorry to sound stupid but could you explain a little more???

I kniow auditory aura is something to do with sound and what the brain is experiencing, but could you enlightening me a little more please??????

I am LOST.

CHEERS

Dee

 

Dee,

I'm glad Virginia posted her story.  I hope when you take Ellie in on the 14th, you can talk them into doing an inpatient EEG.  I have thought about her so much.  I think she could be getting a better diagnostic work up than she is getting.  I have a feeling you are going to stand up to those doctors.

Love and prayers to both of you,

Carla

Hiya Darren,

Thanks for explaining it, sorry if I sound silly but you did confuse me!

I will talk to Ellie about it and see what she says.

I am a little worried at the moment, my cousin was diasgnosed with Viral Meningitus and Ellie was in contact with him yesterday and so was I and Ellie's little sister.

I took Ellie to the Doctors today because if she gets a virus thats when Ellie has her serious seizures and stops breathing.

The Doctor told me to keep an eye on her and watch out for flu like symptoms. If I suspect anything then I need to call them ASAP.

He also said to me that people who suffer with frequent seizures are more proned to sudden death!!!

He said I know it must be a worry to you.

A WORRY...

Thats an under statement..

It scares me to death when she has these seizures, incase she stops breathing and she never starts again.

I really need to get the Consultant to do something next week.

I think you should write a book, you are a great help to me and many others that are joined to healingwell and your experiences can help others to understand.

Im serious it would be a best seller.

Thanks again

Dee

Thanks Carla

I need them believe me.

It never rains but poors, I could write a book about my life over the last 2 years you would not believe what we have been through.

But we keep smiling and we will carry on, we have to have some good luck after the amount of bad we have had.

You are right about Darren, he has been more a help to me than our consultant, I have a hands on encylopedia with Darren here and I am so glad I found this site, everyone has been so helpful and It has really helped me to understand about Ellie's condition.

Will let you know what happens.

Dee

 

Hiya Darren,

Your younger than me, the way you write and your knowledge I thought you had been around for years.

That is great that your mum spent so much time researching Epilepsy for you, that is the same thing I am doing for Ellie, so I can reassure her that she is normal and she has nothing to be afraid of.

So far so good we have been sezire free for 4 days now.

Only 3 days now till we se teh consultant will let you know what happens.

Dee

Hi Dee,

I've been off line because I was moving, but I was also wondering about Ellie.  Please update us when you get some new information.

Prayers to you and Ellie,

Carla

Hiya Darren,

We went to see the consultant the other day and she didn't seem to fazed by what was going on with Ellie.

SHe feels that Ellie is stil have the seizures because she wasn't on the correct dose of Epilim.

I hadn't increased it because she was intending to prescribe another Epileptic drug when we went back.

However she decided that we should increase the Epilim over the next 4 weeks, till Ellie is on 4ml morning and evening.

Then we are to have a follow up appointment at the end of the 4 weeks.

We are currently on 3ml day and night.

Ellie last sunday came out of her bedroom at 9am and said there is a fit noise in my bedroom.

We asked her what it sounded like and she said "BLAH BLAH BLAH".

5 minutes after she had a seizure in the car, it lasted about 4 minutes and she was shaking slightly and just staring.

Then last tuesday she came home from school and was still wearing her uniform, which is a tracksuit with polo shirt. I am this point became very warm and Ellie complained she was cold and the heating was on.

She then sat on the sofa and was completely bent over. I called her twice and she ignored me when I went over to her she was blue and not bretahing and in the middle of having a seizure.

I laid her on her side and about 3 minutes after she came to. SHe also wet herself which is unlike Ellie since starting to have these seizures nearly 2 years ago she has only wet her self 2 other times.

She then slept on the sofa for the rest of the afternoon.

By the evening Ellie was back to her normal self.

Ellie went to bed about 7:30pm and then I was awoken at 4am by Ellie screaming when I went into her she said she had had a fit. I could tell that she had because her arm was completely numb and she could not move it. I took her back into bed with me.

Touch wood she has not had a fit since wednesday morning and fingers crossed she wont have any more.

I am absolutely petrified at the moment though, i can't watch Ellie whilst she is sleeping, what if she was to go blue and stop breathing whilst in bed. I would know nothing about it. I am so scared of this at the moment. I am waiting for the consultant to ring me back and have explained this concern hopefully she will ring me tomorrow morning.

When we return to see the consultant she is going to prescribe us Buccal Midazolam to use incase Ellie's seizures last longer than 5 mintues we have some emergency medication.

I also managed to get Ellie's health insurance for our holiday and only paid £148.00 which is much better than the £750 I was first quoted. That £148 is for the 4 of us to travel and Ellie is completely covered.

Again sorry for the delay in responding I have had trouble trying to log into my account.

Dee

Hiya Darren

Will keep you posted on what happens with the consultant.

We are off to Disneyland Paris, we are going christmas eve and staying for 5 days.

I can't wait and neaither can Ellie.

Dee

Good evening just thought I would let you all know what is going on with Ellie.

We are now on 4ml of Epilim in the evening and 3ml in the morning still, next wednesday we will be increasing the morning dose to 4ml and we will be at the correct amount.

It had been a week FREE of Seizures for Ellie and she had 3 yesterday and 3 today before 8am so another day off of school.

Any how Ellie's consultant rung me yesterday and has decided that before we go away on the 24th December she wants to to have Ellie in hospital and will be carrying out a Sleep EEG and a Sleep Study.

She is also booking me onto an resusitation course at the hospital and also feels that as I am concerned when Ellie is sleeping that we should use an Epileptic Alarm and she is going to show me the companies that she recommends that we should use.

She is going to be in contact this week to confirm all of the above.

Finally it looks like we might be getting somewhere.

Dee

xx

Hi Dee,

I am glad that they are doing an EEG before you go away and that her meds are being managed properly. The resus course should be useful for you as well and give you a peace of mind that you might not have at the moment. Hopefully this will all mean that you have a great christmas holiday

Darren