First Hello

[Bens mom]

Hello,

new to this site so will tell you abit about us here goes.

I am Ben's mom [chris], Ben is 26yrs old and had his first fit aged 15mths, over the years we have done all meds bar two [side effects not worth it].He has been diagnosed with intractable epilepsy [uncontrolled] and a deteriating condition cause unknown.
His story is long so I will just tell you were we are at now. Ben is on phenytoin which has a mind of it's own and does not respond in the way Dr's think it should in fact with Ben it is total opposite. He is also on clonazepam which means all other Benzo's don't work for him.
We are about to embark on the Ketogenic Diet, Ben is abit of a guinea pig for this as it is not being done with adults in the UK. Ben has three consultants who are willing to try this with Ben as his epilepsy as they say their words "the worst they have ever seen". He also has a vagus nerve implant which has not made any difference. surgery is not an option as Ben's fits start all over the brain, we have been told about deep brain stymulation but because Ben could not make that decision for himself it is not available to him at the moment [that would be total last resort] and it is in very early stage trials.

Well that's just a snippet, I am sure you will all get to know us better.
I am looking forward to getting to know people who have had some of the same experiences as us and understand what I am talking about.

Keep Happy

 

[RobinN]

Welcome Chris.
Hugs to you for being Ben's mom. He is lucky.
I sure do hope that the Keto Diet works for you. Was there any reason why the Mod. Atkins wasn't tried first? It has been showing great results in Adults.

Here in the US the term "fit" is no longer used. Does Ben have Tonic Clonic seizures?

My daughter did not function well at all on medication, and they made her seizures worse. So we are controlling them with nutritional changes, and neurofeedback.

 

[Bens mom]

Hello robin pleased to meet you,
Think Dr's want to start at the top and maybe work our way down Keto, mod atkins, mct. We made a few small changes to Ben's diet prior to Diet and had some quite significant changes mainly for the better. He is not on the diet yet couple more weeks few more tests Dietician working things out ect. Like I said think Ben is bit of a guinea pig and as we have nothing left to try and I will be doing most of it we are willing to give it ago.
I'm afraid the terms for fits has changed so much over the year's we normaly go with grand mal and vacancies. There are loads of different terms these days and Ben has had them all over the year's partials,drop attacks ect ect. Ben's patterns change all the time head left,head right,eyes left,eyes, legs up knees bent, legs straight, and whenever we describe them to the Dr's they change again. This I think is just the nature of the beast.

Tell me more about your daughter and what you mean by nutritional changes and neurofeedback. Thanks

Keep Happy

 

[Crazy Monkey]

Hi Bens Mom

I live in Norwich UK, It is great that you have come here to seek information and support for yourself and your son.

I have absence seizures, which I am assuming is what you are calling "vacancies".

Welcome to CWE

Take care

Crazy Monkey

 

[Bens mom]

Hello Crazy Monkey thanks for the welcome,

Went to a footie match in norwich once a long time ago.
Yes we do call Ben' s abscence seizures vacancies.
Would love to hear more about you.

Keep Happy

 

[Crazy Monkey]

I used to go to the footie every home again. I have seen Norwich v Wolves as well. I quit going to the footie regularly once Norwich was demoted and it looks like it is about to happen again ( I don't think you can call me a hardcore supporter, I am a part timer!!!!!!

What would you like to know about me??

 

[Bens mom]

Hello Crazy Monkey,
I have been pottering around the site had a look at your puplic profile, and read the sound off about your mom. So I guess this is how we get to know each other better.
This forum thing is still very new to me, hopefully I will pick it up quickly.

Saw the photo of you in Florida so I know your epilepsy doesn't stop you getting around, so who needs a car.

Keep Happy

 

[brain]

:hello:

And welcome to CWE! Keto is traditionally used
for children, but I (as an adult) have been placed
on the Keto diet several times, while it did help
to a degree but it was only temporary. I am also
intractable ~ moreover the only option on my end
is via medications, no other option is available
on my end ...

So hang in there and there are plenty of options
to go through ... as Bernard has posted before
"The well has not run dry ..."

No further truth than this.

:cheers:

 

[Dutch mom]

Hello Ben's mom,

My son (9) has intractable epilepsy (Lennox Gastaut syndrome caused by brain damage.) His seizures could not be controlled with meds but the ketogenic diet is a real wonder for him. He's med free now and on the diet for allmost 5 years. The diet isn't easy do do but it's worth all efforts if it helps to control the seizures.
You can read his story (in English) here http://site.matthewsfriends.org/index.php?page=joni-s-story


The Matthews Friends forum is a great help for parents with a child on the ketogenic diet http://site.matthewsfriends.org/index.php?page=members-forum I strongly recommend the MF forum, especially because you're from the UK. These English parents do help eachother in a fantastic way, not only by internet but 'live' and on the phone too. Wonderful group of people.

Check out the Atkins section on MF http://site.matthewsfriends.org/index.php?page=atkins-diet-for-adults-and-children

MF is organizing a family conference November 28th 2009. I've attended the 2007 parental conference and it was really great!

Just a quick heads up on our next conference to be held at the Copthorne Effingham Park Hotel, Trojan Suite

There will be a creche available through the day, cost £10 per child.

Conference cost is £20 per person, buffet lunch and refreshments included.

Suitable for parents who would like to learn more about dietary treatments for epilepsy and also adults, carers, school staff, respite staff. Also suitable for those using the diet and will cover fine-tuning, recipes and much more.

Full Programme and speakers details to follow.

Places are limited and on a first come, first served basis. If you would like to reserve your place/s please let me know.


--------------------

Julie Edwards
Matthew's Friends Trustee & Matthew's godmother!

 

[Crazy Monkey]

Hello Crazy Monkey,
I have been pottering around the site had a look at your puplic profile, and read the sound off about your mom. So I guess this is how we get to know each other better.
This forum thing is still very new to me, hopefully I will pick it up quickly.

Saw the photo of you in Florida so I know your epilepsy doesn't stop you getting around, so who needs a car.

Keep Happy

Yeah, thanks to a very useful/helpful Uncle I am able to world travel, he takes the wheel and I take the map. Currently I get by without driving, but my Uncle isn't always going to be about to chaffeur me around.

Sure I am luckier then most because I have someone at my beckon call and I very much appreciate that, but nothing makes up for not having your own independence.

The sound off was purely because my Mums quote was pure stupidity on her part. The padded room in the forum is very useful for venting.

 

[Bens mom]

Keto Diet

Hello Dutch Mom,

Thanks for the info, I joined MF prior to this site. When Ben starts the diet I am sure it will be my second home when I am not in the kitchen.

I read your story on MF, Joni's smile melted my heart he looks gorgeous, I am so plesed the KD has helped him. I will keep in touch and let you know Ben's start date for KD.

THANKS and Keep Happy

 

[Bernard]

Hi Chris, welcome to the forum. :hello:

... We are about to embark on the Ketogenic Diet, ... his epilepsy as they say their words "the worst they have ever seen". He also has a vagus nerve implant which has not made any difference.

I hope the Keto diet works out. If it does, he likely would do well with the MAD or LGIT as well. Check out Paolo's research on the subject.

Have you investigated neurobehavioral therapy or EEG neurofeedback? They can also help in addition to dietary changes.