Daughter with epilepsy

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Nahariya

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Hello!

I just registered to this forum. My name is Shira and I am the proud mother of 3 children. I live in The Netherlands and am also a member of a Dutch epilepsy forum, but there are not many active members there and no members who understand my story. That's why I now registered to an international forum.

My 2 year old daughter Sari was diagnosed with Landau-Kleffner syndrome in September. We have been in the hospital many times and she's also being treated by a speech therapist.

I hope to find some help here, people who have been through the same and know the secrets and understand my story.
 
Hi Nahariya :)

Welcome to CWE. I haven't been very active here lately, but I think I remember another mother from the Netherlands who posts (or used to post) regularly. Plus there are many others from all over. Things are a little slow right now, but hopefully someone who knows what you are going through will be along soon.

Take care :)
 
Hello Shira

I live in NLD...

My Son is 28 and he has Epilepsy :( doing great though I might add ;), we are big believers in natural healing,,,where possible

there is also a room called the nursery here at, maybe idea to explore some other members posts in there..

Feel free to ask any questions....


warm welcome...
 
Also we believe in natural healing, Chaz1. We've tried many things and I really hate to give her medicines. Until now I didn't find another way to help her, so I keep giving her the medication. It doesn't feel right, but it also doesn't feel right to not give her anything. It's a very difficult choice...
 
She is using Depakine now. I was really shocked by the possible side effects that it can have. I'm giving her the least amount possible for a long time to get her body to get used to it, hoping that it will reduce the side effects. That's all I can do now.
 
same med as my Son, it’s very hard on the liver.....did doc tell you this?

Let me put it like this, my Sons sees his neurologist, gets blood test and they say all fine, we do private tests and it shows his liver was under immense distress and his red blood cells not looking to good either, so we say this to neurologist and he says, yes that would be the meds. Grrr..

We are building down again soon on the med and plan to get him to lowest dose possible, but slowly…..very slowly....My Son full grown man....he started at 1000 - I was really freaked when I saw with my own eyes how heavy the meds are when he took his 1st ...they built him up to 1500 because we saw so many breakthroughs and the higher he went the harder it seemed the seizures came bizarrely, and slowly he was not my happy Son, the meds were robbing him of any pleasure in life…….then doc wanted to add another med, my Son said no way....so we weaned down back to 1300, then back to 1000 and will head down again very shortly....but like I said, we are super busy looking at natural healing…….it’s our PASSION

have you researched ketogenic diet? Or have anyone mentioned it? You could do some research there…

My Son is using now CBD daily, since past few months...CBD is growing and growing for use in epilepsy worldwide, so much so the pharmaceuticals are coming with special CBD for Epilepsy, it’s in trail now. It’s available to us here in NLD, not via docs yet I might add, but we purchase on net  and its delivered in days... can we say it’s helping, yes we can…he has nocturnal T/C seizures and takes before bed, we have seen not only decrease in seizure activity, but less violent seizures….could this be our miracle, don’t know yet…but as I mentioned we go for anything natural before upping meds, but on other hand, seizure control is top priority, it’s a vicious circle….CBD may not be for your daughter, but I feel obligation to share….and you will of course make your own choices..

http://www.projectcbd.org/home-2/epilepsy-seizure-disorders/
 
Thank you for sharing.

I know about what Depakine can do to the liver. She will have regular checks in the hospital for that. That was also the reason I didn't want to give it to her, and it still doesn't feel right. Everytime I give it to her I feel a little guilty about doing that to her. But not giving it... That's also something I can't do to her.

I know about that diet, I read about it and talked about it in the hospital. But it's very heavy so I don't want to do that yet. It's on the list, but I first want to try other things before we start on something this difficult.
 
completely understand...feel just the same, no matter how old our children our, their pain is ours....

keep asking the questions - you will get feedback, many have children as young as your little lady using same med..maybe not same exact diagnose.

we all learn as we go and I have learnt so, SO much here...... all the help, sometimes a listening ear, feedback, teachers I have grown to look up to, though they may not even know it..

this girl merely a humble member of CWE family…….and lucky to be.

keep us posted....
 
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