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My 3 year old daughter has been diagnosed with Epilepsy.

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Posted 12/7/2007 6:35 PM (GMT 0)

Dee,

This is usually the way they do it, first an out-patient sleep deprived EEG and then the in-patient EEG.  I know it is frustrating and I wish you didn't have to go through all of this.  It was frustrating for me, but it has to be so much harder when it is your small child. Please keep us posted and know that we are here for you.

Love and prayers,

Carla

Posted 12/7/2007 8:38 PM (GMT 0)

Hiya Carla

Thanks for the reply, I will let you know how it all goes and the results.

I can't help thinking Tuesday morning is going to be a waste of time, as I know that Ellie will not fall asleep but we shall go and see what happens.

Thanks for your support.

Dee

x

Posted 12/9/2007 5:10 AM (GMT 0)

Dee,

Be sure and make her stay awake the extra time they told you the night before and get her up early like they told to the morning of the test, even if you have to fight with her.  It is very important. Sleep deprivation will bring on seizures.  When I went for the two hour EEG, I didn't think I would go to sleep and I didn't think I went to sleep, but I did.  The friend who took me sat and watched me sleep and have seizures on the monitor with the tech.

I know it may not happen for Ellie, but give it a chance.  She will probably have to go in any way for the in-patient EEG, this is just the way they start out.  This may give them a starting point, it did with me.

When I look at the pictures of your two girls on the site, they are just so precious.  I just want Ms. Ellie to get well.

Love and Prayers to all of you,

Carla

Posted 12/10/2007 11:09 AM (GMT 0)

Hiya Carla

I will keep Ellie up late and get her up early, I hope she does fall asleep.

We were on a good run with Ellie she hadn't had a seizure for 2 weeks, on saturday she became quite poorly.

Ellie was already on a dose of antibiotics for a chesty cough and runny nose. I phoned the Emergency Doctor and was told to take Ellie straight to the Doctors.

After examining Ellie they said she had a viral infection just to keep her temperature down and keep an eye on her.

I took Ellie home and she managed to eat half a tin of soup.

She was very quiet, she became very white in the face and wasn't interested in any food at all.

I was just getting ready to go to a family party, when Ellie had a seizure on the sofa which lasted 6 mins.

10 mins previous to that Ellie had a temperature of 38.9 at which point I gave calpol.

When the ambulance arrived they gave Ellie some oxygen and she came round.

Her temperature was still 38.6 so they decided to take Ellie into hospital.

Ellie went in the ambulance with her dad and I folloed down behind by car.

When they left Ellie was fully aware and seemed normal but just had a high temperature.

When I arrived at the hospital I went straight to the ward but Ellie wasn't there.

A nurse run in and called to the Doctor, that he was needed in resus because there was a small girl fitting.

I was so worried, I asked if it was Ellie and she said she had just come in a 3 year old girl, but didn't know here name.

I went round and saw the ambulance driver and he told me Ellie had had another seizure in the ambulance.

They carried out obs on Ellie, amd let us out about 5 hours later, it turns out Ellie has a throat infection.

The seizures Ellie had on saturday were definately feberal convulsions and not epileptic convulsions.

I have decided to keep Ellie off of school now till after christmas all the children in Ellie's class have Chest Infections and coughs and colds and I want Ellie to be fit and well when we go away.

Ellie is still not eating she is saying that it is hurting her to swallow and she isn't her normal self.

I will let you know how we get on tomorrow.

Dee

x

Posted 12/10/2007 12:49 PM (GMT 0)

Hi Dee,

Im so sorry to hear about what has happened to Ellie. The good news is that if the seizures are NOT epileptic then it is less likely to affect her long term. I hope that you get good treatment from the doctor and I look forward to hearing from you tomorrow.

Darren

Posted 12/10/2007 8:05 PM (GMT 0)

Dee,

I have Ellie's EEG marked on my calendar for tomorrow.  I told you from the very beginning that Darren could write a book about epilepsy.  Maybe he's on to something here.  We will keep the prayers coming her way.  Ever since I went to her site, I can't get her sweet little face out of my mind and heart.  Both girls look so precious!

Prayers,

Carla

Posted 12/10/2007 9:22 PM (GMT 0)

Hiya Carla

Thank you very much. x

I haven't added anything on Ellie's site for awhile I will do this week.

It is 9:20pm and Ellie is slowing down, she has a pillow and a fleece blanket on the sofa, I have just given her some smarties, to try and keep her going a little bit longer, I don't think she will last out much past 10pm though.

Will wake her about 4am aswell that way she should be shattered when we get to the hospital it is only a 10min drive, so she shouldn't fall asleep in the car.

I just worry when she doesn't sleep because obviously lack of sleep does bring on the seizures.

Will let you how it goes tomorrow.

Thanks aswell Darren.

Dee

x

Posted 12/11/2007 5:30 PM (GMT 0)
I just wanted to say hi and let you know that my son, too, has been diagnosed.  I will keep you in my thoughts and prayers.
Posted 12/11/2007 6:54 PM (GMT 0)

Hiya everyone,

Just walked through the door it's now 6:55pm.

Ellie's sleep EEG went well will post a reply later or tomorrow!

The unexpected happened today whilst at hospital with Ellie I had a phone call to say that Shayni my youngest was having a seizure.

We were rushed to hospital by ambulance, it was a febral convulsion and she has jsut been let out.

Need to have some dinner and sort myself out, asI have another appointment tomorrow with Ellie will feel you in in more detail.

Thanks

Dee

x

Posted 12/12/2007 12:36 PM (GMT 0)

Hi Dee,

Im so sorry to hear about Shayni. It must be hard enough with Ellie without someone doubling the workload. Im glad that the sleep EEG has gone well though.

Have strength

Darren

Posted 12/13/2007 2:12 AM (GMT 0)

Dee,

Please know that our love, thoughts and prayers are with you, the girls and their father.  I really don't know what to say at this point.  I am as shocked as you are.  We will wait to hear from you when you have time to catch your breath.

Love and Prayers,

Carla

Posted 12/15/2007 1:11 PM (GMT 0)

Good Morning

Sorry for the delay, what a hectic week!!!!!!!

It all started over a week ago the girls had a bad cough and I took the 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 shoudl 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 staright 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.

Dee

Posted 12/16/2007 4:04 AM (GMT 0)

Dee,

What a week your family has been through.  If Shayni had to get a serious illness, the only positive thing is that you know how to deal with seizures.  I so hope you get to make your trip.  I know the girls are looking forward to it.  What an exciting Christmas vacation!

Please keep us posted as you find out more information on either of the girls.  That's good that Ellie did fall asleep for 20 minutes during her EEG.

Please take some good pictures on the trip to share with us. 

Dee, in case you don't realize it, you are a very strong person and an excellent mother.

Hugs and Prayers,

Carla

Posted 12/21/2007 6:24 PM (GMT 0)

Hiya Carla

Thank you very much for that message, it was kind words thank you x x

Touch wood things are still going good for Ellie she had a small seizure on Monday but it really was small, if I hadn't have been watching Ellie at the time I would never had known she had had one.

So Epilim is finally working for my little princess.

I am still waiting for Ellie's EEG results, I haven't pushed it because it is Christmas and they did say the person that read the results was away and they did have a temp, but they have the reading and I will get the results.

No news is Good News.

I had a little bit of Good News yestreday, back in August I applied for Disability Allowance for Ellie and yesterday they sent a letter saying that Ellie was entitled to it and that they are going to pay £45.00  a week to Ellie.

Because Ellie has been granted this I am entitled to Carers allowance and I will be receieving £48.00 a week.

This was great news just before christmas and I will put the money into Ellie's bank and save for her future.

3 days to go till we go away and I really can't wait.

Ellie is so excited, this morning she put her coat and hat on and said mummy I am going to Paris today.

It really is going to be magical.

I wish you a very Merry Christmas and a very Happy new year and I will be in touch when I get back and will of course share our photo's with you all.

Also like to wish Darren a very Happy Christmas and New year and all the other members that have taken the time to post messages.

Hugs and Kisses to you all.

Dee

Posted 12/21/2007 8:11 PM (GMT 0)

Dee,

I am glad to hear about the financial resources that you will be getting.  That's wonderful news.

You all go on your trip and try not to worry about seizures, if they happen, they happen.  Please give those two beautiful little girls a big holiday hug from me and tell them that they have someone far away in the U.S. who is thinking about them and wants to hear all about Disneyland Paris when they get back.

Love and Prayers,

Carla

Posted 12/21/2007 9:18 PM (GMT 0)

Thanks Carla

Speak soon.

Dee

xxx

Posted 1/5/2008 12:52 PM (GMT 0)

HAPPY NEW YEAR TO YOU ALL XXXX

Hope you all had a lovely christmas??

Our trip was wonderful, we had such a magical time and I didn't want to come home! We are definately going to book again next year for xmas. The girls had so much to see adn do and we did not get bored once. The time there didn't go very fast teh days were long but every time we went back into the parks we see something else.

We spent an absolute fortune but it was our first family holiday together and every penny was worth it.

I have uploaded some pics to my facebook profile, not sure if you are a member Carla, but maybe join up and have a look. I took 500 photos, I will upload a few to my blog but I can't upload loads because of storage! Let me know if you are a member because we can become friends on there.

Ellie had 2 seizures on christmas day, but it was down to being tired, the days were long, 8:30am starts and out till 11pm they were only little and she recovered quickly. She had 4 on New Years day aswell. Again we are all still so tired, we need to catch up.

Ellie doesn't go back to school untill the 14th january so she has plenty of time to catch up adn sort herself out.

We are still waiting for the sleep EEG results and as soon as I get them I will let you all know what they say.

The holiday didn't go without a hiccup though, on the last night our video camera got stolen from Lee's coat pocket. I am not worried about the cmaera, that can be replaced but we have been waiting for teh holiday for montsh and there was an hour of the girls and the parade on the disc that was in the camera. They can't be replaced at all!!! Even if we went back next year because the girls will be older. I was so angry that someone could be so cruel. We spent the last day in a French Police Station with no English speaking officers. I didn't let it spoil the last day, but I would ahve been grateful if the low life theif had handed the disc into lost property, but now someone has footage of my children.

I did take another 2 hours of footage, but I hadn't finalised the disc's and so at the moment they are useless, no one I know has a sony handycam. I have contacted a few camera shops and they say they don't do a finalising service and they wouldn't like to do it incase they actually ruin the discs.

I hope you are all well and had a good start to the new year.

Hugs and kisses.

Dee

xxxx

Posted 1/6/2008 5:13 AM (GMT 0)

Dee,

It's so good to hear from you and to know that you all had a lovely vacation.  I think it's to be expected that Ellie would have a seizure from being tired.  Can you email me (you just click on my name and get my email address) and tell me how to sign up on face book to view the pictures?

I'm so glad you all were able to make the trip!  What about Shayni, how is she doing?

Big hugs!

Carla

Posted 1/7/2008 11:08 AM (GMT 0)

Im so glad that you have had a great first family hoiday together. I would love to see the photos and I have a facebook account but I need a way of searching for you! Could you email me something so I can search for you. (Dont post such information on the forums for your own protection)

Darren

Posted 1/17/2008 5:57 AM (GMT 0)

Hello,

My 8-year-old daughter, Sarah was just diagnosed with epilepsy.  She had 1 seizure in her sleep 3 months ago.  Her sleeping EEG showed abnormal spikes, when she was awake, her EEG was normal.

We were advised to try phenobarbituates.  What kind of side effects should we expect?

Thanks

Sarah's worried mom

Posted 1/17/2008 11:07 AM (GMT 0)

Hi Sarah's mother,

I have moved your post into a thread of its own as I think you will get more responses that tagging on the end of someone elses thread. The thread is called "Thread for Sarah's Mother - What are the effects of Phenobatbituates?"

Darren

P.S Please could all people wishing to respond to Sarah's mother please use the new thread rather than this one. Thank you

Posted 4/23/2008 10:18 AM (GMT 0)

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.

Juat 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

Posted 4/23/2008 6:23 PM (GMT 0)

Hi Dee,

Its great to hear from you again and its great to hear that Ellie has been doing so well. Its great to hear that the seizures appear to be under control and that there are few side effects from the epilim. I hope you win your appeal and that Ellie gets a plce in the school you want. I agree that moving her school again has the potential to aggrevate her epilepsy and that is obviously not good for her or for you.

Let us know how you get on... and its great to hear from you!

Darren

Posted 4/24/2008 2:33 AM (GMT 0)

Dee,

It is so good to hear from you.  I had been wondering about you all.  Just last week I had checked Ellie's blog and nothing new had been posted.  I know you and I used to email some back and forth, but I forgot what your email address was, so I didn't know how to get in touch with you. But, you all had had been on my mind for about a week.  You must have read my mind. You can always email me by clicking on my name, if you would like.

I am tickled to hear Ellie is doing so well.  Now, I remember that Shayni had an febrile seizure and was rushed to the hospital while you were already there with Ellie.  Is Shani doing o.k. too?  They are such adorable little girls.   How old are they now?  My daughters are now 34 and 35 and when I see cute little girls close in age, it always reminds me of them.

Please stay in touch and let us know how everyone is doing.

Big Hugs!

Carla

Posted 4/24/2008 6:30 AM (GMT 0)

Hello

Now im back online I can't keep away.

I spoke to Hertford County yesterday and because of Ellie's medical conditions, the letters that have been written may be enough for her to go to the top of the continued waiting list for Sheredes.

This doesn't mean that she will get a place because they only had 60 places and have allocated 61, so they need to have to familes reject places before we will get offered a place.

I will fight this to the bitter end though, Ellie has been through enough in 2 years and now we have some sort of normality I am not willing to move her to another school incase the seizures come back again.

Ellie has made all her little friends and I feel it will be too disruptive.

Any how Shayni is doing fine, the febrile convulsion was related to the chicken pox and touch wood she has not had any repeat performances.

Ellie also had a check at Addenbrookes in january and she is making great progress with her hormone injection. The hospital said that we would not see a great difference straight away it would be gradual. Since Ellie's last check 6 months previous she had grown 8cm and has now finally made it onto the 75th centile chart in her development book.

All round Ellie is donig really well.

You are right thay grow so quick I have been surrounded by new born babies at teh mother and toddlers with Shayni and it only seems like yesterday I had the girls, before I know it I will be seeing them both off. You need to make the most of everyday with them.

Hugs and kisses

Dee

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