New to site-looking for advice

[westre]

My best friends daughter, Marlena, has severe uncontrolled intractable Epilepsy. She is 10 years old and had her first seizure at 7 months old. At one point, she was having up to 100 seizures a day...all types. She has never had any real relief from her seizures. She has development delays which is not nearly as heartbreaking as the unrelentless seizures. Ketogenic Diet, no luck. Every drug under the sun...no luck. Stem Cell treatment, no luck. Although I continue to research for them (because they don't have time!!!!), there just doesn't seem to be anything out there they haven't tried....prayers are a continual part of this process but it just doesn't give them the peace they are looking for for their daughter. We have held fund-raisers to help them with expenses and one thing that we would like to see purchased, to at least give them a SMALL peace of mind, would be interior home cameras with sound so that Marlena can be "LONE" as she calls it! She is constantly telling her Mom "LONE" which of course is frustrating because you can't leave her "LONE"! Does anyone out there have any experience with this? The internet is a great resource but can be very confusing if you are not an expert in the field. If anyone has any information they can share, I would so appreciate it. For more on Marlee's story, you can comment and I can send you a website. It is nothing that would be harmful to ANYONE but I can understand the post not allowing it. Thank you all so much!!!

[Nakamova]

Hi westre, welcome to CWE!

Good for you for helping out your friends. You might want to check out "The Nursery" forum here, which is for parents of kids with epilepsy. Also check out: Neurofeedback - Rebecca's Story

(In it Robin talks about her daughter's progress using nutrition and neurofeedback).

As for the security cameras -- If Marlena's seizures can potentially result in injury, or if she's at risk for status epilepticus, then cameras wouldn't be that helpful unless her caregivers were close at hand.

[Endless]

Westre,

After you have been a member for awhile and have a certain number of posts, the automatic features in the forum let you post links.

I'm so sorry about your friends' child. You are an amazing friend to help out.

So many seizures is heartbreaking. She is so young, but a fair amount of brain surgery is done on children with intractable (incurable) seizures. Have they considered that option? Here's a link that talks about it. Also, if you google "epilepsy surgery children" you'll get lots more info.

http://www.mdnews.com/news/2010_09/0...educesseizures

I imagine she is seeing an epileptologist (seizure specialist), not a general neurologist?

[Ann T.]

Greetings, Westre :-)

Welcome to this site! Has your friend ever considered a seizure alert dog? I watched a PBS special about dogs and the roles they play in helping disabled re-gain their independence this past Thursday night. I can't remember the breeder & the company (for lack of a better term) that helps match a child or adult with the best dog for their needs. I'm sure there are a few people who own seizure alert dogs who can assist you whom visit CWE. Also, if you wish, I can look up the info on our local PBS affiliate, since not all PBS stations run the same programs. Take care, Westre.

[Bernard]

Hi westre, welcome to the forum.

My best friends daughter, Marlena, has severe uncontrolled intractable Epilepsy. She is 10 years old and had her first seizure at 7 months old. At one point, she was having up to 100 seizures a day...all types. She has never had any real relief from her seizures.

... Ketogenic Diet, no luck. Every drug under the sun...no luck. Stem Cell treatment, no luck.

Stem cell treatment? I'm not aware of any treatment option for epilepsy involving stem cell treatments.

I tried to include all the alternative (ie. non-prescription drug) treatment options for epilepsy in this chart. I also posted this summary of ideas that hopefully gives you some ideas: Proactive Prescription for Epilepsy

... so that Marlena can be "LONE" as she calls it! She is constantly telling her Mom "LONE" which of course is frustrating because you can't leave her "LONE"! Does anyone out there have any experience with this?

A baby monitor is not very expensive and pretty effective.

... For more on Marlee's story, you can comment and I can send you a website. It is nothing that would be harmful to ANYONE but I can understand the post not allowing it. Thank you all so much!!!

You can post the website address if you put spaces around the perdiods in the address. After reviewing it, I or another moderator will edit the post to make it a live link. Sorry for the hassle, but it's necessary.

[westre]

Thank you to everyone who replied to me. I want to at least try to address the suggestions.....the main reason for the cameras was just to give her parents a way to be able to hear and see her but from another room in their home. It is not a big home so getting to her right away is not an issue. They do have a camera baby monitor but the sound isn't good so they set up a regualr sound baby monitor as well to hear her. When one of them is home alone with Marlee, it would just give them more opportunity to be in another room and cook dinner and still feel like they are not putting her in danger by having her in another room. Marlee is also Autistic so getting her to sit in one place and do various activities works. It is not as though she is running around the house, unfortunately. As for the brain surgery, she was evaluated at the Cleveland Clinic a few years back but her seizures are not localized so she was not considered a candidate for the surgery. I have read recently about a new procedure for her type of Epilepsy called Brain Stimulation but this is a fairly new and invasive procedure so we are doing more research on this option at the Miami Childrens Brain Clinic (not positive I got the name right). I am not sure I am aware of the neurologist things one person posted about so I plan to read up on that today and forward along to my friends. Sorry, I am trying to remember everyone who was so kind to reply with ideas but can't remember it all. As for the stem cell treatment, I think we all hoped and prayed it would have some results but were told by the doctor he did not know. I think when you hit as many brick walls in treatment as they have with Marlee, you try everything to make your child whole again. THANK YOU!

[RobinN]

This gentleman helped recover his son from autism and others have followed his research, and have improvement with seizures. He does knows of great DAN doctors who share similar knowledge and results. You might send him an email.

http://stankurtz.com

[Bens mom]

Hello westre, I use cameras and monitors for my son he is 28yrs old, they are the best thing I have ever bought. I have three cameras, two monitors, and a portable monitor. They are from a company called summer, I have one by my bed and leave it on all night. I hope this helps you friends. If you need more info let me know. Bens mom.