Hello all!

[Pipsee]

Hi there!

My name is Pip and I'm part of a couple of online forums for mums and stuff but I have never come to an epilepsy forum and thought it was about time I did!

My Daughter has seizures (I just wrote this whole story on my profile but here it goes again! ) she was born in 2007 and she had global developmental delays. She used to pull funny faces and throw her head back as if she was stretching her neck and when I took her to the doctor he said, "babies do some funny things and not all children develop at the same rate"...

So skip a few months and she still had global developmental delays and then she started having these clusters of seizures. They are unlike any seizure I have ever seen or heard about (my Aunt is epileptic and I have witnessed her seizures - full tonic clonic seizures).

They come in a cluster where she pulls her head down and her arms come up and her eyes roll back for a second and then she relaxes and keeps playing as she was, then the same thing happens again and again for a few minutes and by the end she is tired but it is as if she didn't know it even happened. This would sometimes happen 3 times a day

After many tests and a few different changes of medicines she very seldom has a seizure any more BUT we still don't know what caused the seizures or if she is going to be ok developmentally.

(sorry for writing a novel about it all!)

As for me I'm Australian, I like music, I like cooking and gardening, I love Jane Austen novels... hehehe

 

[Pipsee]

Oh I forgot to add that I am looking out for anyone who has seen or heard of or has this kind of seizure - it's like brain hiccups sort of! I have heaps of video of her having them that I had to take for the Neurologist and was wondering if I should up load them a post a link - they aren't disturbing at all and she can't hurt herself when she has them - most of the time she just keeps doing what she was doing... is posting a link to a video too weird?

 

[Nakamova]

Hi Pipsee, welcome to CWE!

We have a few other members from Down Under, and folks from all over the world have found this to be a great place for support and information. There are other parents of children with epilepsy on the site, and I'm sure they'll chime in soon. Below is a link that has formatting instructions for posting, including a way to link to video.


http://www.coping-with-epilepsy.com/forums/misc.php?do=bbcode

Best,
Nakamova

 

[Epiphany]

Welcome Pip
Keep going Keep asking and pushing...you are a momma and know what you are talking about is all I can say. Doctors looked at me like I was crazy but I fought til I got a doctor who believed me and who I knew would take good care of me...
With that being said...
Is he aware during the seizure?

 

[katyt]

Hi Pip, I am not familiar with children with seizures, but I would just put in a word of caution. I am a firm believer in a mother's instinct, and you could well be right about your little girl. But I would just like to say that children really can do funny things that are not seizures.
My son had what many people said were seizures, but I was certain they were not. It started at 6 weeks old, and at that time was extending his legs dramatically and rolling his eyes. Later he would scrunch down, his eyes would roll and he twitch for a while.
I had to fight off family and friends who all thought this was very odd. What convinced me was that I could always interupt him, and at about 4 years old I taught him not to do it, mainly because it was very disturbing to look at. I did this slowly and gently so as not to disturb him with a big fuss, and he responded very well. He is now a very healthy 35 year old with 2 beautiful girls!

 

[Pipsee]

Hi everyone!

Thanks for your replies! I must not have been all that clear about the doctor thing - Doctors do belive me - it was just that one that didn't

Her peadiatrician was holding her when she had her 3rd seizure at about 10 months and was convinced it was a seizure. Also the seizures stopped her from developing normally and since they have stopped (medications stopped them) she is starting to develop again.

there is no question that they are seizures - the questions I'm trying to find the answer to are - has anyone else ever seen a seizure like this? is it something that my other children might have? what caused the seizures in the first place? Will she have special needs forever?

What caused the seizures seems to have stumped all the doctors and I'm not even sure if they have seen seizures like this before. I guess that many people never find the cause of their seizures - if nothing shows up on an MRI or an EEG or anything...

I've seen Peadiatricians, Neurologists, Metabolic Specialists, Nutritionists, Developmental Specialists, Genetisists etc etc and they are all working really hard together to find out what is causing the seizures and haven't been able to come up with much. Medication seems to have stopped them but I don't know if she just grew out of them! so now I don't know if she is on medicines that she doesn't really need...

eek! another novel...

 

[Nakamova]

Hi Pipsee --

The majority of seizures are of unknown cause. Often with infants there can be a recognized cause such as birth trauma, or a fever, but even in those cases the seizures don't necessarily follow a predictable path. Many kids do "grow out of" their epilepsy -- one of the advantages of the neuroplasticity of the developing brain. I hope that's what has happened for your daughter.

Best,
Nakamova

 

[Bernard]

Hi Pip, welcome to the forum. :hello:

They come in a cluster where she pulls her head down and her arms come up and her eyes roll back for a second and then she relaxes and keeps playing as she was, then the same thing happens again and again for a few minutes and by the end she is tired but it is as if she didn't know it even happened. This would sometimes happen 3 times a day ...

They sound like complex partial seizures.

 

[Pipsee]

Oh thanks for that info Bernard!

 

[Pipsee]

I tried to upload a video but I haven't been around for long enough! hehe

I wish we all knew everything there was to know about the human brain... It's just so mind boggling!

 

[Bernard]

The forum doesn't host video files. If you have uploaded the video to Youtube, you can post the address (URL) for the video here, but replace the periods in the address with spaces. A moderator will fix the link for you after reviewing it. Sorry for the hassle, but it is necessary.

 

[Pipsee]

What kind of world is this? Do you know here in Australia a woman got her daughter and two of her friends to beat up another girl who had a disability!! She made a video and put it on youtube and was arressted. She got community service and 2 years suspended prison - these are the parents of the kind of kids that would come on here and try and cause seizures...

 

[Meetz1064]

Hi, hello

and how do you do, Pip?? It's very nice to meet you!!

I'm Meetz.

As Mr B said, those sound like some complex partial seizures....but you might want to check out the Nursery to talk to some other parents whose children have seizures also.

DutchMom, one of the other supermoderators here, has some wonderful links to some other groups that might help you, too--her son has a syndrome called Lennox-Gastaut. It is a somewhat severe form of childhood epilepsy.

There is tons of information to be had in the Kitchen and the Library--and the Padded Room is great for venting when you need to---and trust me, we've all been there at one point in time or another.

Feel free to lean on us when ever you need to...we'll be here for ya, no matter what.

Mr B has built us an AWESOME home here, and that's why it's great for making soooo many friends! Enjoy the dinner party!!

Take care,

Meetz
:rock:

PS.....Have you ever tracked the seizures?? To see if there are any specific triggers---such as type of food, time of day, lighting, or anything like that? Hormones can even set them off....You might consider starting an E journal....

 

[Pipsee]

PS.....Have you ever tracked the seizures?? To see if there are any specific triggers---such as type of food, time of day, lighting, or anything like that? Hormones can even set them off....You might consider starting an E journal....

She always had them after sleep or just before (if she was sleepy) so I think that's what sets them off - being tired.

Thanks for the warm welcome! It's too bad everyone on here is in a different time zone when I'm writing in! hehe