Just wanted to introduce myself and my little boy Matt.
Matt is nearly 4 and had IS with multiple sz types from 4 months old, no cause can be found. He never used his arms but did learn to sit unsupported and walk (holding your hands) by 10 months old he stopped doing this and thats when the sz's went from 1-3 episodes a day to over 25 episodes a day. In Jan 2005 Matt had a severe reaction to Phenobarbitol resulting in Steven Johnson Syndrome and had to come off all AEDs except nitrazapam and then he started to have tonic-clonic sz's. He currently takes nitrazapam and gababpentin. In October a g-tube was fitted as he doesn't eat or drink anymore, then in Jan 2006 we tried the keto diet which increased his sz's to over 200 a day with constant sickness. Now he has aproxx 60 sz's per day though we waiting for results from a telemetry EEG which was done last week and we expect it show alot more sz activity. I think this will determine which route we next take with Matt and i think the VNS is probably the route his neuro wants to take.
Thanks for reading this
Deb

:Welcome: Deb

Thank you for sharing Matt's story with us. You have found a pretty good bunch of folks here. Even though we don't have many parents posting, there are quite a few who vist.

I am surprised to hear the Keto diet made matters so much worse for him, I had never heard of that before. Everything I had read or heard about the keto diet was more or less positive. He must be very sensitive to metabolic disturbances, dietwise.

Please keep us informed of his progress should you opt for VNS.

Birdbomb

Hello Deb and Birdbomb,
I agree with Birdbomb. I've never heard of the diet making the seizures worse either. The diet may have just needed finetuning, a med reduced or removed, a keto team that didn't believe in the diet (or didn't know what they were doing) or hidden sugar somewhere. It usually takes at least a few months on the diet with several diet changes to know if it will work or not. Something else made the seizures worse while on the diet...but the diet itself doesn't make the seizures worse.
My own son started the diet the 2nd time Jan.18, 2005 following the John Hopkins protocol of the diet precisely and he had his last seizure on Jan.20, 2005. He has been completely medication free since August 3, 2005. He started the diet totally g-tube fed using a feeding pump 22 hours a day and we were able to "work up" to totally eating and drinking by mouth and just had his g-tube removed April 24, 2006. He was diagnosed with Lennox Gastaut Syndrome at age 3 and had hundreds of seizures a day and went into nonstop seizures requiring a stay in the ICU each time. He was on the diet the 1st time for 3 1/2 years (1996 to 1999) but had to come off thanks to an illegal wood dump near our home catching fire. It caused Scott to have a severe asthma attack that we couldn't control without high doses of steriods. The steroids brought him out of ketosis which in turn sent him into nonstop seizures. Regardless of how they adjusted the meds or the diet it didn't help so he was weaned off the diet. Those 3 1/2 years went out the window and were totally wasted. He had been totally seizure free for 1 1/2 years and he was only 1/2 tablet away from being medication free when the fire started. It broke our hearts (and that's putting it mildly). So he had the VNS implanted in 2000 which has been a totally different nightmare for us as well. It was totally turned off in 2003 after he was diagnosed with Intracranial Hypertension and Papilledema- both (and other problems) caused by the VNS. We went back to trying meds and med combo's until we started the diet again. So far we have been experiencing the ketogenic diet miracle and pray it lasts forever.
What ever you decide to do next, please keep us posted and hope that it helps with the seizures. Take care, Fay

Thanks Birdbomb and Fay
Wow Fay what a rollercoaster you have been on !
Matt was on a trial here in the uk the 'classical' version of the diet against the MCT liquid version, Matt was on the MCT version and the Dr said it was probably the MCT that Matt couldn't tolerate we tried quite a few different 'strengths' of MCT to try and build him up slowly but he just couldn't. He could get reffered for the classical but it could take up to another year (not many dietians) in the field near me.
However reading the stories about the vns is making me nervous as Matt has lots of reactions to most things ! (Due to him having SJS)

Hi Deb
I want to also welcome to the forum.
I am sorry you are Matt are going thru all this.

I will be the opposite as the other posts seeing I have heard of the keto having a negitive effect on some.

We looked into the keto for our son and decided it just wasnt for him.

I sure hope things get better for you and if you ever need to chat or vent please feel free to yell I am here to listen I know first hand how it is to have a child going thru this Danny has over 160 grand mals in two years.

Big Hugs
***ps Can I ask are you in the states?***

Hi and welcome to the Board, My child is not a epileptic, I am but have two children. I can't even begin to image what it's like to watch your child go through everything you have.

The one thing I would suggest to you, is you look very carefully at all the side effects of the VNS. Matt already has a number of the issues the VNS can create, I'm worried the VNS would make it much worse.

Is Matt verbal?

Hi Jen and Petunia
We live in the UK (in the middle!)
Matt is non-verbal unable to walk or sit up but is the sunshine of my life, we have just come back from Matts 2nd holiday to Florida.
Thanks for the welcome everyone
Deb
Mum to Matt (nearly 4)
SLD, Microcephaly, Intractable Epilepsy

Hello Deb and thanks for giving more info about Matt.
From what you've told us, it sounds like you've been on a very rough roller coaster ride too.
I want to tell you that I'm sorry. I didn't know that Matt had been on the MCT version of the diet and had just assumed that you were talking about the classic ketogenic diet. And I know that a person should never assume anything so I gave myself a huge kick in the rear. I hope that you'll forgive me. The MCT version of the diet can make the seizures worse and can also cause stomach cramps, vomitting, runny stools, etc too. Plus from what I've read in the keto book, read on the net and have heard from other parents and dieticians (I'm a professionally trained Ketogenic Diet Coach), the MCT version of the diet doesn't have the success rate that the classic does either.
If there aren't any more options other than the VNS and trying the classic diet and you are nervous about the VNS, maybe trying the classic diet before getting the VNS would be a good idea. That way you wouldn't always be wondering if it would work or not. You could always stop it and get the VNS if it doesn't work out. You mentioned that it can take about a year to get on the classical diet there but it could take that long to see if the VNS works after it's implanted too. This is such a hard personal decision that only you can make really.
The diet can work miracles without surgery. And if the diet works, the child can become totally medication free and never have a seizure again even after coming off the diet. And if the child still have seizures but not as many on the diet, the seizures still don't increase again even after you come off the diet. The VNS requires surgery to implant it and multiple (depending on age) surgeries to replace the generator when the batteries run out. Naturally a young child will need several more generators replaced than an adult will and each replacement surgery carries new risks. The VNS can take months to see if it helps or not and can have a lot more serious side effects. And the VNS works WITH the meds, so although you might be able to reduce the med, you can't just stop taking the meds. Sometimes the VNS works wonders within a few weeks and there aren't any side effects or complications either. I've heard that too from parents.
I am NOT trying to tell you what to do or trying to talk you into trying the classical diet so I'm hoping you realize this. I'm simply trying to explain a few differences about them that you might not have thought about or known about. Both the VNS and the diet have been a blessing to many people and only you can decide what you think is best for Matt. I know decisions like this are very hard to make. I've been there. My heart goes out to you. I know the feeling of not knowing what to do next and just praying a miracle will fall out of the sky. Please keep us posted with Matt. We're all here for you- just like Rocking said, so vent and ask away.
Take care, Fay

Hi Fay
Theres no need to apologise Fay.
Thanks for your replies they are helpful.
We were in a trial here at Great Ormond Street hospital the MCT version vs the classical version. A computer chose which diet Matt went on, this took 16 months in total ! So when after 6 weeks Matt came off the diet i was so upset and angry that 1 it had took so long to get him on the diet and 2 it never worked !
Our neuro app' got cancelled on Thursday so now we have to wait until September so Matt will nearly be 4 (12th sept).
Hopefully i will have had more time to think.
Take care

Hello Deb,
I'm sorry that the appt got canceled and that you have to wait 3 more months to get seen. But that will give you enough time to think about everything and do a lot of research too so that you can make the best decision for Matt. I know it isn't easy. Feel free to email me anytime if you have any questions or just need to vent.
Take care, Fay

Thanks Fay
I think at his next app there wil be alot of talk though i won't be making any final decisions, in the UK there is a group called matthews friends, anyone can join it is all about the keto diet i joined when we tried MCT and next week there is a conference and a DR that Matt was under (but not actually seen) will be there. It is a 2 hour drive but i think it will help me with the decision of VNS against Classical diet like you said it could take a year for the VNS to work, plus there are more complications with the VNS/Surgery.
Once again thanks
and i will take you up on your offer for a chat ! (sometime soon) !
Take care

Hello Deb,
I've heard of Matthews Friends too but I've never checked it out because I think most parents there use the MCT oil and Scott is on the classical ketogenic diet following the John Hopkins protocol. Plus Scott has GI problems so the MCT isn't an option for us.
Did you know that there is a yahoo keto email list too? You might want to join that so you can ask questions about the classic ketogenic diet if you'd like. There are lots of people, lots of questions, lots of advice and sometimes lots of confusion because there are many different protocols of the ketogenic diet for epilepsy there plus people doing Atkins and glycemic index for epilespy diets too so what one center allows several others don't which makes for some interesting learning sessions sometimes. But it's a great group of people who will be more than glad to answer any questions you might have.
A parent on the keto email list told us about the conference next week (she's going). I wish I could go but we'd never be able to afford it. I'm hoping that someone here in the US will have one that I can go to. I hope that you can get as much info as you need there about both the VNS and the classic diet to make an easy decision.
You are more than welcome to email me any time too. I look forward to "talking" to you soon. Take care, Fay

Hi Fay
Its a mixed group of peolpe on Matthews Friends lots of children doing 'classical' join and give us a go.
I am a member of the yahoo group too just don't post as i find it very confusing !!!!(doesn't take much)!!!!!
I suppose i should try but until we speak to his neuro i'll just read and take notes !
Take care
xxx

Thanks Deb. I'll take a look and join. I'm glad you told me that there are classic keto on Matthews Friends too. I thought it was just for the MCT keto diet so hadn't gone over to take a look or join. And yes, the yahoo keto group can confuse more than help sometimes. Most new parents who join don't know that there are more than one way to "do" the diet so when they ask questions and get conflicting answers, it sometimes confuses them and a lot of other parents there too. But they are still a great group of people and you do learn a lot about the diet and about the different protocols too. Take care and please keep us posted on Matt.

Hi Fay
Have you visited Matthews Friends ?
I think we are going to go down the keto route first then the vns.
Hope you and yours are well
Take care
Deb