New Member

[Richard Lowes]

Hi All,

My son has seizures. I was looking for information on diet and nutrition, among other things, and was browsing this site. Thought I might as well sign up. My son is 15 and was diagnosed about 7 years ago. We've had our ups and downs. Last 2 years have been great until this week. Not sure what brought them back but one of the things we suspect is his diet. Long story and since I'm new here I'll keep it short. Where's a good place to find out how his medicine, carbamazepine, reacts/interacts with what he eats? We recently tried to introduce a bunch of 'health' food type things, because of the results from his annual check up, vitamins, fibre, copper...etc., feeling really bad about it now, really bad, but wondering why/if that's what it was.

Thanks,
R

 

[brain]

:hello: Richard

Glad to have you here at CWE! Sorry
to hear about your son's seizures, but
unfortunately, medication(s) do not
completely control or eliminate the
seizures, although there are some lucky
folks out there where medication(s)
have caused them to become seizure-free.

I'm on AED's and I have episodes now
and then, and my diet is fine. But you
are strongly encouraged to browse
around and to keep close rapport with
your son's Neurologist / Epileptologist
before starting any new diet or health
procedures, don't do this on your own
without consulting with the Doctor first.

There could be a lot of factors involved,
such as puberty, hormones, et cetera;
after all - he is growing up!

 

[Bernard]

Hi Richard, welcome to the forum. :hello:

brain is correct, it could just be due to puberty/hormone changes. My wife's seizure patterns went haywire with every pregnancy due to the changes in hormones.

Where's a good place to find out how his medicine, carbamazepine, reacts/interacts with what he eats?

Most of the seizure control diets that have been studied as a means of seizure control focus on restricting consumption of carbohydrates and simple sugars. The only food that I am aware of that has a direct negative impact on AED function is grapefruit:

Grapefruit juice interferes with the liver’s ability to rid the body of some substances. This could cause seizure medications to build up to toxic levels in the body. While the buildup is less likely if the juice is ingested four or more hours prior to the medication, patients taking seizure medications are advised to refrain from drinking grapefruit juice at all. There is no indication that eating grapefruit (as opposed to drinking juice) presents any risk of adverse effects to patients.

There are also a few herbs known to be seizure triggers. Of course, there are some other commonly reported as dietary triggers. Keeping a seizure diary where you also record everything that is eaten or drank can help identify patterns and possible triggers.

You can find out more info about the seizure control diets from the chart linked in my signature.

 

[RobinN]

Hi Richard -
I am on a similar quest. Actually seeing a GI doctor this month, and talking with a nutritionist that is on the cutting edge of the learning curve. If I find out anything I will be sure to post. I have not found much help with traditional doctors.

My daughter is 16, and one thing that I suggest is to watch out for MSG related products in the ingredients. It is a sneaky item and sometimes hard to spot... but it is connected to seizures. As are the sugar substitutes.

 

[skillefer]

Hi Richard! Welcome to the group!

 

[Stacy]

hi Richard,

Welcome! Get your son to keep a journal of EVERYTHING he eats, drinks, meds he takes, time, how he feels after, before during, what time he makes a trip to the potty and what it looked like. EVERYTHING. It's a big pain in the butt to do, but keeping this will help you and him see patterns of his seizures. Sounds like they are hormone related, as are mine. I found that when I start feeling shakey, I drink some electrolytes and feel better. I have taken in exercise, Yoga and neurofeedback. It's helping. Oh... I also purchased "breathe right" strips for my nose to help me breathe better at night. That also helps tremendously. I was told by Dr. Donna that part of my problem may be that I'm not getting enough Oxygen in my system at night. I feel like I'm so close to solving this puzzle I could taste it.... BUT... until I conquer this thing, it won't be over. Good Luck and keep us posted.

 

[Birdbomb]

Welcome Richard

There is a wealth of information here. And so many helpful people, I think you should be able to find some very good suggestions!

 

[Richard Lowes]

Copper supplement is the most likely source of our problems

Thanks everyone for the replies and suggestions.
He's still having them daily but not as many, or as severe, so I think we're back on track. Getting better every day. I've heard from 2 sources that a liquid copper supplement is the most likely source of our problems. The thinking is one of the side affects is that it produces alcohol. Not good with AEM’s. I don't pretend to understand it, but it's an answer, and more than I had before. Anyone have any thoughts on this?

R

 

[RobinN]

Interesting Richard.
I did not know the role that copper can have in seizures issues.

http://drlwilson.com/Articles/copper_toxicity_syndrome.htm
http://www.drlwilson.com/Articles/epilepsy.htm
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1528-1157.1972.tb04397.x

Other factors contribute to seizures in slow oxidizers. The level of copper in the body tissues is elevated in most of the slow oxidizer cases of seizures. This occurs because slow oxidizers have a tendency for elevated and biologically unavailable (or so-called biounavailable) tissue copper. Copper is a needed trace mineral. However, it is highly toxic when in excess or biounavailable, as it is in these cases of epilepsy. This, too, was research conducted by Dr. Paul C. Eck.

Sources of copper include meats, nuts, seeds, beans and to some degree cereal grains, especially wheat. Meats are “protected foods”, however, because they also contain high amounts of zinc. This balances the copper in the meat because it competes with copper for absorption in the intestines. This reduces the absorption of the copper.

Copper imbalance is very common today, and so strongly associated with seizures that I am surprised more is not written about it. Yet copper excess or unavailability can be corrected easily in many cases, often within a few months using a combination of dietary changes that are discussed later, and a nutrition and lifestyle program that targets this imbalance.
Copper imbalance as a contributor to seizures occurs in both men and women. However, women are more prone to this type of seizure activity. The reason is that women are what we may call copper-dominant. We can use this expression because copper is intimately involved in estrogen metabolism. Women’s bodies have more estrogen than those of men, or at least they should.

Makes a lot of sense.

 

[Richard Lowes]

Chocolate is high in copper

Thanks Robin, some good reading in those links.
My son will be disappointed to hear that chocolate is high in copper, but I suspect my wife will be happy to hear it.:lol: Chocolate is a staple in my diet.

 

[Zoe]

Hi Richard,
Welcome to CWE! Tegretol affects the liver's metabolism of vitamin D. That in turn affects your son's ability to metabolize calcium and phosphorous, which may lower his seizure threshold. That's just for starters. Try a google search on "tegretol" "side effects", "tegretol" "heart" for more information.
There are many aspects of diet affecting seizures and it is well worth the time to check them out. Google is wonderful as it provides a lot of information links rather quickly. Take each of the vitamins amino acids, and minerals and do a google search on each one with "seizures".
The amino acid taurine can be very effective in reducing seizures and is one amino acid that enabled me to get my seizures under control without drugs after my brain surgery for seizures failed. Supplements can be good, but they have dangers as well so it is best to check them out well before using them. Many pharmacists have information on hand too about the drug and food\herb\supplement interactions. Please share the information you find and the questions it raises. A few links for you below.
Zoe


What are the most common side effects of Tegretol? | epilepsy.comIt may happen because Tegretol can interfere with the way the body uses vitamin D. This vitamin is needed to help the bones absorb calcium. ...
www.epilepsy.com/medications/i_tegretol_side

http://hubpages.com/hub/Epilepsy-and-Nutrition

http://www.healingwithnutrition.com/edisease/epilepsy/epilepsydrugs.html

 

[Zoe]

Richard,
I forgot to mention that tegretol is one of the AEDs now making news as increasing the risk of getting suicidal. It is the drug I was on when I tried to commit suicide in the 1980s. Once i got off the AEDs, my so-called "mental-illness" disappeared. So be very aware that if your son's behavior changes it may not be his attitude, but may be drug induced.