Introductions

[Maryna]

Hi everyone. What a relief to find a forum like this. My 13 year old daughter, Robyn, has just been diagnosed with elilepsy. Is came out of the blue. A healthy, gifted child with absolutely everything going her way suddenly has a grand mal seizure which lasted more than 5 minutes. After the seizure she was unconsious for about another 5 minutes. The usual story...may questions...more tests.....no answers and lots and lots of fear. Just when we thought it was a once off event (afterall "everyone is entitled to one seizure"),two months later she has another seizure (not quite as long as the first one, but as devastating emotionally). My happy, intelligent child (now on Epilim) is quiet and depressed, always tired and battling to consentrate. We went to see a dietician today who specialises in children with epilepsy and the ketogenic diet. She has put Robyn on a low GI diet (Adopted for epilepsy). Except for the increased intake of fat...it is basically the same as our normal diet.... Can it make such a huge difference?

Can anyone tell me whether the tiredness and "Spaced-outness" with the Epilim get better? Does it take a while to get used to it or is this what she will have to deal with from hereon? Any other better alternatives?

We have no family history of epilepsy and I shamefully have to admit that we do not know too much... this forum contains a lot of information- thank you for that, but please bear with me if I ask stupid questions....

[Meetz1064]

welcome to CWE Maryna. We are glad to have you here, and are sure that you will find your way around in no time.

First, the ONLY stupid question is the one that is purposefully unasked.

Honestly, everyone's reactions to meds are very individualistic. What may make Robyn tired and spaced out, may make someone else totally wired...

Help yourself to this wonderful home that Mr B has made for us......you're gonna love it here, I promise!

Meetz

[RobinN]

Hi Maryna - Welcome to CWE
I didn't know much when my 14 year old had her first seizure. In fact, I have to admit I knew nothing. She is 17 now and I feel very comfortable even challenging a medical doctor these days. Knowledge is power.

You can read Rebecca's story which is linked in my signature.
My daughter tried 4 meds and none were acceptable to us. She is now med free and controlling her seizures with nutritional changes, supplementing for brain health, and neurofeedback therapy. I am so happy that she is being seen by a dietician. I am going to request one, as Rebecca has been tested and her blood sugar is a definitely a trigger.
Nutrition can make a HUGE difference.

The side effects of the meds caused more seizures, vision problems, moodiness, fatigue, suicidal thoughts...etc for Rebecca.

We have no history of Epilepsy, but all Epilepsy means is that you have had two or more seizures. I do not buy into the fact that "it" is often genetic. Perhaps the underlying cause might be, but we all have seizure thresholds. Our daughter's just are lower than most their age. What I am working on, and I suggest you do too, is find the cause and return the body to a state of "health".

BTW - I like her name. I always wanted a "Y" in mine.

[LivingFruity]

Hi Maryna Welcome to CWE!!!

My son was recently diagnosed with epilepsy, although he's much younger than your daughter. I didn't know much at the time, but I was not comfortable with the direction his neurologist wanted to take and the unanswered questions I had going round and round in my head.

I started researching and asking questions, and soon learned that there were ways we could control his seizures and restore health in his body instead of covering up the problem with medication. I had to find a new doctor, but it was worth the time and effort. We're now treating our son with a combination of diet, nutrition, and cranial therapy. He's completely med free.

If the side effects your daughter is suffering from is more than you/she wants to deal with, then look into alternative methods and try to find a doctor who will listen and support you in this quest. Just don't go off the meds without medical supervision as this could lead to more seizures.

[skillefer]

Hi Maryna! Welcome to CWE. I tried posting earlier today, but kept getting interrupted and ended up getting timed out. Anyway, as to your questions...

1. The only stupid question is the one that isn't asked. That's why we're here. To share from our experiences. The docs don't always have the answers.

2. spaciness - That is probably from your doctor trying to get used to the epilim. It always takes time for people to get used to the meds. And spaciness or drowsiness is a common side effect at first. This should diminish as time goes by. However, if it continues after a month, you might want to ask to have her levels checked. They might be too high. Also, you have to remember, the meds are meant to dampen the activity going on in the brain, so you may find that she doesn't get as happy as before...Depakote (I think that's another name for epilim...) as well as phenobarbital especially do this. Depakote is used as a mood stabilizer so it tends to damped emotional responses.

3. Causes- Most of us neve know precisely what caused the seizures. For some it's genetic, for others it can be other reasons like a prolonged spiked fever as an infant, low blood sugar, hormone fluctuation (puberty, pregnancy, and menopause..), head injuries, food allergies, etc....

4. Other therapies - there are other therapies that many of us have investigated. There's posts in the library at this site about them. Some, like myself, use magnesium as a complimentary therapy to diminish the amount of meds that we have to take. Others have found diet therapy and vitamin therapy so successful that they can even control their seizures with just those therapies. Also, check out EEG neurofeedback. It's becoming well enough known that even some insurance companies will cover it now.

And finally, this is my suggestion from my own experiences. Be careful how you react to the seizures around your daughter. When I was 13 and had my first seizure since the age of 3, my mom's reaction was to freak out, panic, and become extremely worried and stressed. Her response made me feel guilty for having the seizure because I didn't want to do things that would make my mom feel that way. She reacted to the seizures the same way every time. My dad would react in a laid back, relaxed, and reassuring way. So that whenever I had a seizure and had to tell people who to call, I would always ask for my dad. Mom was just too stressed. So, I would suggest that you try to stay calm when your daughter has a seizure. How she sees you respond may end up effecting how she feels about her seizures, copes with them, and feels about herself. Also, try to think of seizures like other medical conditions like diabetes or asthma. Conditions to be dealt with. I have grand mals, and have since 3. I have a wonderful husband, a bachelors and masters degree, a wonderful career as a school teacher (and yes, I've had seizures in front of my classes..), an honorary doctorate, and a drivers license. Now, I'm pregnant and cant wait for the little bundle of joy growing inside of me. So don't let seizures kill your dreams for your daughter...or her dreams for herself. You and she may have to modify those dreams (for example, my sister-in-law who also has seizures couldn't become a surgeon, but she is a pediatrician in a major hospital..). And there will probably be things she will need to avoid like swimming by herself, or going on roller coasters...but those are little things. Your not alone..and neither is she. The hardest part of this will be accepting that she's a little different, and dealing with how her peers react to her. Just be there and be supportive. I hope this helped.

Oh! I forgot to add....Ketogenic diet can work extremely well with kids and adults with seizures. In fact it has a pretty good success rate with kids.

[Maryna]

Thank you very much for all the information, but even more for the understanding and support. Robyn has started on her new diet today. Strangely, it has made both of us feel empowered (if that makes any sence). I now have something to manage, making that feeling of total helplessness more bearable.The doctors here have not mentioned neurofeedback to a possible therapy.... I have some research to do...

[LivingFruity]

Thank you very much for all the information, but even more for the understanding and support. Robyn has started on her new diet today. Strangely, it has made both of us feel empowered (if that makes any sence). I now have something to manage, making that feeling of total helplessness more bearable.The doctors here have not mentioned neurofeedback to a possible therapy.... I have some research to do...

The feeling of empowerment makes complete sense You are on the right path. It's not surprising that the doctor did not mention neurofeedback. Most doctors are just going to give you the diagnosis and offer a pill. When that one doesn't work for you, they'll offer a different one and so on and so forth. Take this new feeling of empowerment that you are experiencing, and allow it to carry you forward into the wonderful world of research. The empowerment will only grow more as your knowledge grows and your options open before your eyes

[Bernard]

Hi Maryna, welcome to the forum.

... My happy, intelligent child (now on Epilim) is quiet and depressed, always tired and battling to consentrate. ... Can anyone tell me whether the tiredness and "Spaced-outness" with the Epilim get better? Does it take a while to get used to it or is this what she will have to deal with from hereon? Any other better alternatives?

My wife reacted the same way with sodium valproate/Epilim/Depakote. It never got better for her. She had to switch to another med.

There's a chart of alternatives on this site (see link in my signature).

... We went to see a dietician today who specialises in children with epilepsy and the ketogenic diet. She has put Robyn on a low GI diet (Adopted for epilepsy). Except for the increased intake of fat...it is basically the same as our normal diet.... Can it make such a huge difference?

That's great and yes, it could make a huge difference. My wife is also on a low GI diet of sorts. It helps.

... We have no family history of epilepsy and I shamefully have to admit that we do not know too much... this forum contains a lot of information- thank you for that, but please bear with me if I ask stupid questions....

There are no stupid questions. Ask away and we'll do our best to help answer them.

[Maryna]

Thank you Bernard.

I am elated today. We went to see a Neurotherapist yesterday and we have made an appointment for Robyn's assessment and QEEG for Thursday. We are very hopeful that this, together with the diet will manage the seizures.

I find it hard to believe that the Neorologists and Medical Aid Companies do not promote Neurofeedback therapy, or any alternate therapy for that matter. They seem very happy to prescribe meds and tell you to come back in six months.

So, I have to thank this forum (and the friendly people here) for the tip - I would not have known that alternatives exist, if I had to go on what the doctors told us....

[RobinN]

Very exciting news!
Keep us informed, and feel free to keep a journal here of your experience. It certainly does help others when they are trying to make informed decisions.