How many have tried GFCF diets for epilepsy?
 

Here is a thread that I posted on the Epilepsy forum of BrainTalk. I would love to hear about what you guys think about it or have done in this regard.

Thanks in advance,
John

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Hi Everyone,

I was just wondering how many of you have actually tried gluten-free, dairy-free, soy-free, corn-free diets for epilepsy? With the ever-increasing awareness of the dietary effects on seizures and the popularity of the ketogenic and now "modified Atkins" diets in people (which I view as helpful but certainly not ideal), I would like to think that more and more are seeing the link between diet and epilepsy.

Most of you know that this has been my passion for the past 7 years, driven by the astounding success I have seen in dogs with epilepsy, at least in those whose owners were totally compliant. I have also now heard of a number of cases in which there were very significant improvements...and even full recoveries...in people who have applied these principles. This should all make sense, especially when we grasp the concept of lectins, which we now know are neurotoxic. Yes, the lectins of gluten can kill neurons.

That fact, combined with the malabsorption syndrome created by the "big 4" (gluten, dairy proteins, soy and corn) and the high glutamate and estrogen contents of these foods, should make it easy to see how food issues can be directly tied to epilepsy. Put "celiac epilepsy" in your search and you will see lots of great info tying these two together.

So, how many have actually tried the elimination diet (or The G.A.R.D. as I call it) for epilepsy? Do any of you have any good success stories to add? I started a thread on this Labrador retriever forum on which to post testimonials, both veterinary and human- http://lab-retriever.net/board/forumdisplay.php?f=13 (See Sticky at the top of the page)

I hope this helps,
John

Really?
 

No one has tried gluten-free, casein-free diets for epilepsy?

May I ask what is keeping you from it? Do you not believe it will help or do you think it will be hard to impossible to employ? Do you believe that stopping all gluten grains (wheat, barley, rye), dairy, soy and corn will be dangerous to your health? Do you need some testimonials? Do you need to have the pathomechanism behind how these food cause seizures explained in simple (or complex) terms? Have you already tried without success?

I would love the chance to address all of these questions and more if you are interested. There is overwhelming evidence that this can help tremendous numbers of epllepsy sufferers. The medical profession is quite excited about the results seen with ketogenic and now "modified Atkins" diets. Wait 'til they see what happens when they focus on "the big 4". :)

John

I did it!
 

Yup, just about 5 years ago I started having unexplained seizures. I took a whole lot of poisonous meds that didn't work, and eventually got tested for a gluten allergy (through enterolab.com---after it came back positive I got the blood test from my doctor and that came back negative) I got on the web and read some info written by you, and decided the soy, corn, and dairy had to go. 2 weeks after going gluten free I had the craziest, most intense, strange dreamlike seizure I have ever had. That was 1 yr and 8 months ago, and not one seizure since. (I was having about 1 every 2 months, and they were getting more and more frequent) I am still on meds, Dilantin and gabapentin, but I was on the same mix in the same amount, and having seizures. Now I have reduced the gaba by one pill every day, its been over a month and no bad effects. Today I'm starting to take one less pill a day, and I am not worried at all, I fully believe the seizures were happening from the diet. (to any concerned citizens out there, yes I have talked with my doctor extensively about this-he bet me a nickel that I was going to have another seizure, and damn do I want my money!) So Dogtor, you asked the million dollar question, why haven't other people tried it? I was surprised at the response I got when talking to other epileptics---I don't think anyone took me seriously. I don't understand because of how low my life had gotten while having these seizures, I would have tried everything--and I would think it would be the same for anyone else suffering from the same. Along comes an option, something that might help. All I have to do is change my diet for a little while, and see if it helps---if not, I go back to the ho-hoes. BUT PEOPLE WON"T DO IT! I really think it has to do with 2 things---laziness and addiction. Addiction to bad food that they think they can't go with out, and laziness because the solution is not just a couple of pills you pop every day. I urge anyone who is having seizures or any other health ailment, try the diet. Nope, it might not work, and if it doesn't you go back to whatever diet you want, it's not like anyone is saying cut your arm off, it might work. The worst that will happen is that you don't get junk food for a month. The best thing that could happen is that you get your life back. As I am lowering my meds right now I will keep checking in and letting people know how things go. I am very optimistic. Thank you Dogtor J---you are doing a wonderful service to a lot of people by doing what you do. I invite anyone to E-mail me with questions or comments, and Dogtor---if you need anyone to write out a testimonial, I'm all yours.

So simple
 

Hi Binger,

Thanks for the great post. Ain't it amazin'??? :) Like Jimmy Buffett said in one of his old songs about a moonshine drinking bear who started to dance..." a sniff, a sort, a turn and a grunt. So simple, like the jitterbug, it plum evaded me." LOL

This dietary approach is simple, just not easy. But, it IS easy to understand how and why it should...and does...work. As youknow, my site goes to gross detail. People, including many doctors, just do not understand the immense problems that these harmful glycoproteins (lectins) can generate. The cool thing to see is that these same foods provide more than ample warning that they can cause serious health problems through signs such as heartburn, IBS, pain, insomnia, headaches and much more. We can't say that we have not been warned.

I hope that you continue to do well. You should no trouble getting that nickel
from your doctor. :)

Keep in touch,
John

Hi John,
After our email ping-pong in February, I began my daugher(15) on a GFCFSFCF diet. Thank goodness for Whole Foods, it was easier than I imagined. In addition to a natural hormone, She has now been seizure free for three months. Nothing....

The more research I did the more my common sense kicked in. I had never given thought to the intestinal health of my child. She was constipated, not drinking much water, and eating what I considered to be a healthy diet... full of white flours, and dairy. I have slowly taken her off of her ASD because I am healing her internally and see great results.

I am forever indebted to you, and your willingness to share your knowledge. I have yet to find a doctor that is interested in this subject. I quote your studies quite often, and suggest others look at your site.
I can not comprehend why others would not consider this route before more radical methods. Guess popping a pill is easy. Seeing the suicidal side effects reported on Neurontin made up my mind to pull her off of it.

Thank you from the bottom of my heart. I hope to report back with continued positive results.

Robin

Hi Robin,

It's GREAT to hear from you again. Your response brought tears to my eyes. Many times I simply rejoice when I hear positive testimonials from Internet acquaintances, as I have received more than enough to be 1 million % convinced of the universal benefits of going GFCFSFCF. But, every once in a while I simply break down in tears when I get an Email or read something like your post. Maybe it's the fact that an innocent child is involved or that the individual has been suffering needlessly for sooooo long. Or maybe it is the statement that the person has not been able to find a doctor that knows this stuff, which triggers a reaction of frustration. But many times these tears come when reading a testimony like yours right after writing an Email to someone else about how God's wisdom changes everything.

You are right: The doctor support for this approach is practically non-existent. I used to actually persecute them for this until I realized (was shown) that I was just like them for the first twenty years of practice. It is our training. We are not taught this stuff. We are, in fact, trained to think very differently with emphasis on making the diagnosis so that we know what drug to reach for to treat that problem. "Now you feel it, now you don't" is the concept, sorta like the magician and that white tiger....now you see him, now you don't. But is he really gone? Nope. He's back stage and sometimes even attacks the magician. Hmmm... The root word of "pharmacy" is pharmakeia, which means........magic (sorcery, witchcraft). There is some truth in that today, with many drugs doing little more than reversing normal symptoms to the ultimate detriment of the patient. Not all drugs fall into that category, of course, but a rising number of newer ones do, with some being recalled just before they hit the market. Scary stuff.

Thankfully, a paradigm shift in our medical thinking is now in full swing with this nutritional information being a HUGE part. There IS an alternative to drugs that have as their side effect the very symptoms for which that patient is being treated (e.g. neurontin and seizures). But if people really can't see that fevers are a good thing and help fight infections or heart burn is a negative reaction to something they ate, then how long will it take for this shift to take place???

We just have to keep fighting the good fight and doing it on all fronts, both in the public's eye and behind the scenes in the medical professions. This is only going to completely turn around when the doctirs are all on board but I can tell you that THAT glass ceiling is VERY thick. In the meantime, we become our own best medical advocates and do our homework. Thank God (literally) for the Internet...and forums like this one. :):) :)

Please keep in touch,
John

Hi Dr John,
I don't want to burst the bubble just yet, as my daughter had a couple seizures this past cycle. I know many of the triggers and certainly having a teen dealing with this disorder does not make it any easier. Perhaps she needs a few of these episodes to be a believer.
I was wondering though about doctors unwillingness to buy into this idea. Curious to know if it is a personal thing. Because if it were such an easy answer as nutritional changes, then they too would more than likely have to make those changes themselves. I have had a sister say to me, it is so much easier to pop the "red" pill. I don't believe there are many people that have been unaffected by "disease", or maladies, and if dietary changes would cure them... Oh my, but that is far too difficult. My life is hectic anyways, and I like the food that I eat.. I want to be able to go out to my fave restaurant... what no ice cream? .... and so on....
Our new neuro said in our first appt that she would have difficulty giving up her soda. Excuse me?... we are talking to someone with a seizure disorder and there is a direct connection.. Wow. I will have some teaching to do.
She states in her bio that she specializes in hormonal seizures, and yet is not a hormonal specialist... .again Wow. Yet she is far superior than those that we have dealth with this past year.
It is a puzzle and finding the right pieces sure is a guessing game. Your information though makes the best sense to me. As you said once.. common sense. Listening to that, and motherly instincts has been my guide.
Thank you for that.

RobinN
Have you ever seen a Dr.(even with the "red pill" working)tell you NOT to come back in 3-6 mo.? They need to protect their practice.And their income.

Hi Dr John: I would like to know if one can have goats milk yogurt on this diet?
You say no dairy does that include goats milk yogurt ?
Or just cows milk?
I have just started this diet and my husband says it means cows milk . BUt I would like to make sure.


Thank You
Riva

DeeBee - very true

John - another two cycles without incidents. Diet good and seizure med's still at 1/2 theraputic dose. I truly attribute the positive results to nutritional changes.

Riva - I am under the impression that goats milk has a much lower % of casein than cows milk. We use goat milk mozzarella cheese sparingly.. maybe once or twice a month on a small pizza. Personally my thinking is if that is one infraction, try it and if you see negative results you will have your answer.
I am sure Dr J will come by and give you the bigger picture. One that I am just beginning to see.

Thank you Robin I am using it sparingly. Its 3 days I am on this diet and my stomach feels so much better , I have been having stomach problems for the past few months and this is the first diet to help it. Secondly I have an under active thyroid and have not been able able to lose weight and I started to lose to weight on this diet I am so happy.

I am weaning off my meds and taking homeopathy meds once a month and this diet kinda balances me out . I truly feel great .

Thank you so much for your advice DR John its truly appreciated.


Will keep you updated on my progress.

Riva

I am so glad to hear it Riva.
It is also a diet that is being used for Autism as many of them tend to have intestinal issues. There must be a connection. I sure wish those with the funds would move in this direction of research rather than ever so many new drugs. People tend to "give up" after one attempt, and yet what I am gathering is that success comes from coming at this from many directions nutritionally.

This is hard!
 

Dear Dr. J and other readers,

My son has suffered from epilepsy since he was 8. He has gone off of meds twice, but would eventually have another seizure that required him to be put back on. He is currently 16 and of course, driving. He started having seizures again in the fall.....we put him back on meds and he has been seizure free until last week. He has been great taking his "pills" because he is scared to death to have a seizure. Luckily, they only happen at night so far.

I have been scouring the internet for some other alternative to medicines and have totally decided that all I have read about going without the big "4", gluten, dairy, soy and corn is probably the answer. We have been doing the diet for 2 days, but it is soooooooooooo hard to find stuff that my son likes.
Thank God for the potato! I'm so worried he's not getting enough protein.

Oh, and let me tell you, I am convinced that these seizures started back this summer because I have been pumping him full of fluids (ya know, I wanted to make sure that dehydration wasn't the cause of another seizure). Guess what fluids I've been giving him? .........1/2 strength CRYSTAL LIGHT, ya know the artificial sweetener poison stuff ?! UGH!!!

He is a great athlete...he's #3 in the state for cross country running and he's an all-state lacrosse player. I can't keep him still!

Could someone help me as to what to feed a teenage boy that basically ate just milk products and bread products?

I have been looking for recipes and we've gotten through 2 days so far. My husband and I are also doing the diet. I'm so worried I can't keep him nourished enough or full enough.

Sorry for ranting......Does anyone out there have some good choices of foods to eat....I know all the veggies and fruit. I've been giving him smoothies and we've used gluten free, casein free bread for toast.

Talk to you soon. I can't wait to keep in touch and give everyone the good news!

Hi Folks,
I've never been on the GFCF diet for epilepsy but I have been on the ketogenic diet for epilepsy and take my word that diet has done wonders for me. The diet has been out since 1927 but a lot of the drs. stopped the diet after all the AED's came out. The diet is high in fat, low in carbs and protein it's similar to the atkins diet but you have to weigh all your food on gram scale. For adults and older teens the average is 4 grams of fat to every 1 gram of protein a day. The diet builds up keytones in a persons body and the keytones stop or reduce sz. Also when your on the diet you burn off the fat for energy instead of carbs. I lost 75 lbs. on the diet in 4 months and my cholesterol level is much better than before I was on the diet. If any of you are interested in the diet you can speak to your local dietician and you can also buy the book titled: "The Epilepsy Diet Treatment" By Dr. John Freeman from Hopkins University. Here's wishing all of you well and May God Bless You!

Sue

Porkette, What are some of the things you do & don't eat?

Why the elimination of corn?
 

I was diagnosed with epilespy 4 years ago after being diagnosed basically as a hypercondriac for many years before. I just now have stumbled upon the correlation of diet and epilepsy and have been dairy, gluten and wheat free going on a month now. This thread is the first that I have seen talking about soy and corn free as well. How does soy and corn fit in to the equation? Selfishly - chips and salsa have gotten me through the days where I was feeling sorry for myself I couldn't eat a Domino's Pizza, but will certainly make the adjustments as needed to be as healthy as I can. What are the thoughts out there an corn and soy?

Thanks!

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible. You will find a lot of ones here in this tread to help you with many questions.

Again welcome, looking forward to seeing you around.

Darlene :hug:

DoctorJ,

Thank you for bringing up diet.

I was born with a rare brain disorder "heterotopia". The medical name is much longer, but we'll start there. 24 years ago I began experiencing seizures, 5 types of seizures numbering 100 a month. After many types of meds, the doctors now have me on 3 seizure meds. No one ever mentioned a diet. I learned of gluten intolerance last year after experiencing IBS for about 5 years( no meds taken for this). At about the same time I heard red meats were hard on the digestive system. That being said, today I am red meat free, wheat free, dairy free, refined sugar free,and corn free. I'm focused on reaching optimal health and am still experiencing about 20 simple partial and complex partial seizures a month. My body developed degenerative disk disease leaving me unable to exercise(aerobics to burn fat) without pain. I have a desire and goal to shed 40 pounds healthfully and need help. Anyone reading able to offer advice?

Thank you for your replies

gluten sensitivity/celieac disease
 

Hi, dogtor j. I googled celiac disease and seizures and I came across your website. I am glad I came across your website. Because I have been having complex partical seizures for 20 years now and my doctors has not said anything about my diet I have had 2 brain surgerys and a vns aed and none have worked I am going to bring all this infomation I have gotten off the web to my doctor. But could you please let me know what I should bring with me or what I should print off the web to take with me when I go? And I think it has been a god send that I ran across your website and all the possitive testimonls I have been reading makes me feel excited about starting this diet. God Bless You Dee-Dee :Wave-Hello:

Hi. I have been searching forever to find if anyone has had any success with the gfcf diet. I saw a lot of info on it helping autism and thought that if they had that much success, than it probably would help with seizures. My 8 yr old son was diagnosed with a seizure disorder almost two years ago. He mainly suffers from absence seizures but has had a few real big seizures as well. We have been on 6 different meds with a ton of awful side effects and his seizures are still not under control. There has to be another answer! I have taken him off of dairy already with some positive results but hesitated on gluten because he is soooo skinny. The meds make him not want to eat and he hasn't gained weight in two years. I worried about taking away another food source, but it seems like it may be the answer. If there is any advise you have, tips, links, whatever, I would sure appreciate the help.

Thank you for posting about this.

Sorry for the absence
 

Hi Everyone,

I'm sorry that I have been away from the forum for so long. I am trying desperately to finish my book, a major part of which in the diet for epilepsy (the GARD). The results continue to be astounding in both pets and people. I am probably hearing about more human cases than veterinary at this point.

I will be launching new Website in the near future with updated testimonials, including one from a father of a child suffering from Late Infantile Batten Disease, a tragic neurological condition that is characterized by seizures and early deaths. Yes, the diet helps in many forms of seizures. I have even had pets with brain tumors stop seizing for a time on the diet. Once we understand the mechanisms involved- the malabsorption syndrome, immune suppression, lectin damage, and glutamate overload- and how they are all driven by the "big 4 foods (gluten, dairy, soy and corn) and complicated by food additives (e.g. MSG, aspartame), estrogens/xenoestrogens, and environmental pollutants, then we KNOW what we have to do and why the approach works.

I have treated epilepsy and other seizure disorders with diet alone for almost 10 years now with amazing results, proving that the elimination diet is the single factor in the control of seizures. But as of late, I have added a few vital supplements to the "to-do" list that make sense in our quest for seizure control. These include D3, omegas, magnesium, B complex, selenium, lecithin (from eggs), and antioxidants. The latter include vitamin C, E, and grape seed extract, the last being one of the most powerful antioxidants known (yet man created seedless grapes. Hmmm...). These should all speed up and insure recovery as many of us are woefully deficient in these vital nutrients. But I am thankful that I used the elimination diet alone to treat seizures for the initial ten years to prove that the forbidden foods were doing sooo much harm in epilepsy and other cases of neurodegenerative diseases.

The most recent discovery has been the secondary "glutenization" through the consumption of animals that are fed gluten, soy and corn, chicken and eggs being the most notable. I suspected years ago that this was possible but I only recently found this to be true in my own life. The elimination of chicken greatly improved my daytime moods and energy levels. There are now articles available from people who found the same thing about eggs produced by chickens fed a vegetarian diet (soy, corn, wheat). Sadly, these are very real issues and will affect the "worst of the worst" individuals, perhaps even preventing an epileptic from enjoying a full recovery.

The cattle (cows, lamb, deer, buffalo) are less likely to have high levels of lectins in their flesh due to the fact that they ferment their food in their forestomachs, fermentation being a process that helps to inactivate lectins (e.g. yogurt, kefir, soy fermentation and even sour-dough bread).

The use of glucosamine could actually help remove these trace sources as this essential sugar is known to bind to proteins (such as those from gluten, dairy, soy and corn as well as bacteria) and prevent their attachment to tissue. This is one of the known mechanisms of essential sugars (which is a fascinating topic to study).

The bottom line is epilepsy is bound to be viral in origin and it is the negative effect of diet and pollutants/free radicals/carcinogens on these entities that leads to seizures. There are over 25 viruses known to cause seizures in man alone, many of which are chronic, latent and ubiquitous. Epilepsy, ,like autism, appears to be a "perfect storm" situation in which the neurons and immune system are damaged, resulting in seizures when the glutamate, aspartate, lectins, estrogens/xenoestrogens, and free radicals are applied to those diseased neurons. And it is clear that these viruses can be transmitted
in the very DNA of individuals (which we know occurs), explaining the human family and dog breed predisposition to "idiopathic epilepsy. This is similar to familial cancers (e.g. of the breast) and other neurological disorders (e.g. Huntington's). This is what some viruses do- incorporate their genetic information into our DNA. We should not be surprised to find that much of this is transmitted vertically to our offspring. I just heard from a client who was epileptic and whose father was and his child is epileptic. This happens regularly in breeds of dogs.

I hope this helps to clarify just why the diet works so well but why some individuals have to do much more to see results than others. But I am convinced that even the worst can respond if they are capable of doing enough right. That may involve moving from NYC or some other horribly polluted city (like one of my MS success stories did) or the successful treatment of a co-existing condition (e.g. hypothyroidism- VERY important) but I see now reason why anyone with idiopathic epilepsy cannot improve if they are willing to take the appropriate measures.

I do hope this helps,
John

soo many questions!
 

Okay, my first question is this, if i start the modified atkins diet to control my seizures, will I have to be on it forever?? If so, what happens if i go off of the diet, i mean trying to think realistically, being in college i've got my whole life ahead of me, first and foremost being seizure free would be great. Right now I take keppra to control my seizures and its worked pretty well. I have a grand-mal seizure only once every 2 years or so (i'm extremely fortunate) But mine are very SLEEP related. If I don't get enough sleep, I most definitely have a seizure, most would thing simple- and yes I've got it much easier than a lot of people with epilepsy. However this has lead me into extreme anxiety, restlessness, my doctor put me on sleeping pills, and they help- but I want to be off medication completely. So i guess what i'm trying to get at is, if i start this thing and I see that it's working, will I be able to ease my way back eventually into "healthy eating" not just watching my carbs, AND if i start this, and i'm out for a night with friends, will I be able to.. eat cake at a birthday party or... hot chocolate occasionally in the winter? or have I got to be strict to this thing forever?


Sorry for all the questions please let me know asap!

Hi Honeygirl,

If you go on the atkins diet you will have to stay on the diet for at least 2 yrs. if not longer. The atkins diet is very similar to the ketogenic diet which is really meant to reduce or stop seizures. This is a very strick diet and you will have to watch what you eat while on either of these diets. If you are interested in either of these diets you should see a dietician who can help you out and get you on one of these diets. If you want to try the ketogenic diet you can buy the book titled: "The Epilepsy Diet Treatment" By Dr. John Freeman this book explains how the diet works, some of the side effects from the diet, as well as giving you a few recipes while on the diet. Whatever you do you much cut back on both carbs and starch foods along with nutra sweet and anything like nutra sweet. You will have to eat foods high in fat instead but take my word you will lose weight I lost 80 lbs. in 4 months on this diet and my cholestorl and blood pressure have been the best they have been in yrs. Here's wishing you well and May God Bless You!

Sue

my experience
 

I have Juvenile Myoclonic Epilepsy which I have had for 11 years, since I was 17. The teen years is usually when JME starts (hence the "Juvenile". Throughout the years I have learned my triggers. By far the biggest, main trigger for people with JME is sleep. I have to get lots of sleep and I can't get up early. (You may think that sounds great but I actually miss out on a lot!) Another trigger for me is my menstrual cycle -- when I ovulate and especially when my period is at it's heaviest I have more seizure activity. (Sorry for TMI!) I don't have grand mal seizures very often since I am on medication, but I have "jerks" -- muscle spasms in the arms that if I don't control my triggers I eventually have a grand mal.

Two years ago I radically switched up my diet to avoid the severe constipation I experienced. My jerking immediately got a lot worse. Through much Internet research (Dr. J and others) I discovered the connection of epilepsy and food. What I had done was starting eating whole wheat and whole grains. Previously I had only eaten white flour and very occasional whole grains.[/B][/B] I switched back to eating white flour, in moderate amounts and added more fruits & veggies, to avoid constipation.

I had also completely cut out cheese to avoid constipation, a food that I had eaten a lot of very regularly previously. Unfortunately when I slowly started to add back things in small amounts like cheese, I discovered I couldn't tolerate it -- my head felt very strange, and I would jerk worse the next morning or even shortly after eating. I also experienced panicky feelings after eating foods like whole wheat.

I recommend to anybody planning to switch their diet radically to instead do it gradually. Also expect that you may never be able to go back to your old way of eating. Don't let that scare you though if it helps your seizures.

I am still learning every day what I can and can't eat. Besides my epilepsy, I also have to think of constipation, and my interstitial cystitis, and just health in general such as my weight. I often get discouraged because it doesn't seem there is anything I can eat. I like variety, and there is only so and so many potatoes and eggs I can eat a day...a week...a month!

This is what I have discovered personally myself, through Dr. J, other websites, and trial and error (I haven't even bothered mentioning this to my md or neuro) :

-absolutely NO whole wheat
-absolutely NO Parmesan cheese
-absolutely NO soy

I avoid the above 3 like the plague, and soy seems to be in everything!! I have become an obsessive label-reader!

I also quite strictly limit :
-white flour
-any grains
-any cheese
-seeds, beans, nuts
-sugar

I have always hated artificial sweeteners, so it hasn't been too hard for me to avoid that one, too! Yuck, it makes me feel awful & tastes horrible!

I have never had a problem with corn, rice, dairy in limited quantities, chicken, eggs, most meats (I've never eaten much meat anyway), and veggies. Fruits I try to eat the ones with the lowest amounts of sugar.

That's my own personal experience. Anybody else out there who has JME or have children who do?

2 year old with epilepsy on GARD
 

Hi everyone. I am in England but would like to share my daughters experience.
For 8 months the doctors have been pumping Hannah with anti-epileptic medicine. It started as one medicine in November last year, then increased to 2 medicines a month later as she was too hyperactive and they wanted to calm her down. She continued to have seizures. She has had MRI, EEG's and various other tests to rule out the more unpleasant conditions. At my last meeting with the neurologist three weeks ago I asked to be put on ketogenic diet as I was sick of all the side effects of the medicine. She is irritable, emotional, her speech is undeveloped and it is noticeably worse since starting on the medicine. The doctors would say this is the epilepsy and not the drugs. She is clumsy and although they wont confirm this I believe that it is a cocktail of the drugs she is receiving. I hate the drugs and I feel so upset having to put three syringes in her mouth every morning and night. Because of the hope of the diet (but it being a 6 month waiting list) I began to do my own research on the internet regarding diet and epilepsy and that is when I started to think that I could make changes myself in a safe manner with a view to reducing her seizures. Here I read about G.A.R.D

Hannahs seizures are mild in the sense that they are not grand mal seizures and involve only her head nodding and muscles twitching slightly in her arms and hands. Before she started on the medicine 8 months ago they were very infrequent. The daily amount of seizures has fluctuated since then and would be anything between 2 and 6. The medicine in my opinion has made absolutely no difference other than make my daughter unhappy and makes myself and her family more concerned. Her seizures last a couple of minutes, maybe a little longer and she is always tired after. She has a cluster of head drops. When I first started to notice them before she went on the medicine it was like she was falling asleep with her head going down, but then she would wake up again. Imagine someone sitting in a chair nodding off. It was like that. Other than 2 episodes in the last 8 months where she was a bit rigid and her lips went a little blue, hannah has not shown any signs of any other type of seizure. However, this hasnt stopped the hospital from feeling that it is an evolving form of epilepsy.


I have spent hours scanning the internet every night but always making sure that it is information and suggestions that are repeated more than once on different epilepsy web pages and not just some random person saying what they would do. I read a great detail about Glutamate and its affect on the brain. The doctors hate the internet. I hate talking to them about what I have read. I feel like they will laugh at me. From what I understand, I think Glutamine is an amino acid involved in transmitting information in the brain. Glutamate in food can cause harm to the brain when messages are overwhelming. Glutamic acid from food sources can get into the brain injuring and killing neurons. I am not saying I know all of this. I am just saying this is familiar and repeated information I have come across.

By adapting her diet and eliminating the harmful ingredients that are contributing to her seizures, I want to increase Hannahs health and raise the threshold for epileptic fits to occur. Does this make sense? I am trying to find the cause of the seizures as epilepsy is a symptom of a condition or illness, where as the hospital are trying to control the symptoms. This to me isn’t a solution. Its just delaying something.

Apparently, our genetic make up makes some people more prone to illness and disease than others. We all have viruses in our body that usually remain dormant until something aggravates them so much to the point that the body cant cope and the person become ill as their immune system cannot fight it any longer. My mum died of breast cancer aged 34. Completely random as no one else in our family had it. Prior to getting epilepsy, Hannah had more than her fair share of chest infections. The doctors actually gave her an inhaler to use which did absolutley nothing. To me it seemed like she had quite a weak immune system. I have read that one of the causes of seizures is chronic infection. Maybe Hannahs genetic make up didnt give her the protection that she needed (like my mum) and this infection buried itself in her brain and started to cause seizures. I dont know I am just looking for answers.

I saw that dairy and wheat have high levels of glutamate. I stopped these at first. Within one day hannah stopped having her seizures that occurred in the day. Prior to this it was common for her to have one or two when lying in bed after waking in the morning and she would always have one or two later in the day. However, she continued to have them in the morning. Hannah had loved her milk. She would have about 8oz in the morning to drink. 6oz with her breakfast and another 8oz at night. This is full fat too. I was lead to believe by what you read and see on the television that milk was so important. I know different now. She also used to have weetabix and banana for breakfast. She now has oats and fruit of wheat

I have since excluded soy and corn and gluten

Hannah has adapted well to the changes I have made. Lots more poos. She seems happier but that could be because I insisted that the neurologist decreased the third medicine as I really didnt like the side effects. I am in touch with a qualified Nutritionist who is a tutor in nutritional healing. I am providing Hannah with foods that contain calcium which she will be missing from her dairy.My neurologist has advised me to speak to a dietician also through my doctor which I will also do. He wasnt appreciative of the reduction in seizures through her change in diet.

I have read that Medicines that control seizures may interfere with the bodys ability to use certain nutrients. Most vulnerable are those on multiple drugs and high doses. This is Hannahs situation. How do I know if her body is absorbing everything it should be and that my hard work isn’t going to waste?

Hannahs seizure seems to occur in the morning now either on waking when she is still lying down or within an hour of waking up. I am now trying to get a lot more water into her as that is SO important. Her body needs to become more alkaline. Simple things like soaking her oats in water overnight and giving her warm water with a splash of orange juice at night instead of rice milk. I am learning so much along the way.

I really believe her diet will be the key to controlling her seizures. Who knows what the long term effects of medicine might be.


So many tests they could do but I guess it boils down to the fact that the dont want to spend money. Like hair strand test would tell them about any inflammation in the brain. Seizures could be as a result of nutrient def, enzyme def, intolerance tests and so on. Because they don’t want to do all these tests they just say its idiopathic meaning they don’t know the cause. I feel that if they tried hard enough they would find it. Instead they offer the simplest and easiest method for parents which are the drugs. As no one knows the long term side effects of the drugs people are usually happy to just deal with the symptoms. I want more. All these possible tests are diet related and not one mention of the importance of diet and controlling seizures has passed the doctors lips. I know they are trained in a certain way and that probably using prescribed medicine is the way to go but they are human after all. Surely if someone like me can look deeper into a problem, then why don’t they have the same instincts? I guess if they offered a natural approach then they wouldnt be a doctor would they? Doctors treat symptoms.

I really believe that it is possible to reverse some conditions by cleansing the body of all the horrible things that have been thrown at it and by introducing nice things in the way of good food to help it heal. I understand it can take time especially as Hannah has been having daily seizures for 8 months. It angers me so much that the medical profession pray on the vulnerability of parents who have to trust their doctor because they know nothing else. I believe that if hannahs medicine had worked after the first drug was introduced and her seizures stopped then I would have settled for that. I believe I have been given the chance to do what should have been suggested to me in the first instance by the doctors rather than shoving this unnatural rubbish down my poor daughters throat. Doctors dont have to recommend seeing a dietician or nutritionist but for a parent like me who was gobsmacked to discover she had epilepsy, being given all options would have been nice so that i could decide which I thought was best for her.

Thank you for reading this. I just wanted to give some insight into my experience with epilepsy and diet. Obviously, it is up to every person or parent what they think is right and I am by no means suggesting changes you can make. Hannah still has her medicine but I will be speaking to the neurologist about weaning her off when he gets back from holiday. I know that medicine must never just be stopped. Good luck everyone. Sometimes simple changes can make a difference, thats all I am saying and it doesnt have to be forever. Just until they are better.
Debbie :)
xxx

Hi Debbie,

Welcome to the forum! I've been taking AED's (seizure meds) for over 30 yrs. now and I found that I was drug resistant. You are correct the diet is the best way to go and the diet won't hurt your daughter as much as the AED's do. I've been doing the ketogenic diet on my own since my health insurance company is refusing to cover me to see a Dietician.

I don't know how old your daughter is but I started having seizures when I was 10 yrs. old and the main thing that triggered seizures for me was hormonal changes each month. I later found out that eating almond or peanuts was a big help because they have progesterone in them and this helps calm the nerves and reduces seizures.

Some of the ways a person can end up getting epilepsy are:

sleep apnea, lack of oxygen at birth or later in life, difficulties at birth, family genes, drug or alcohol abuse, trauma, a bad blow to the head, or to many cells on one area of the brain that never dissolved and in turn lead to scar tissue on the brain.

If you can get it get the book titled "The Epilepsy Diet Treatment" By Dr. John Freeman this is an excellent bood that explains all about the ketogenic diet, how it works, the side effects, along with a few recipes. I wish you and Hannah only the best of luck and May God Bless the Both Of You!

Sue

Hi debbie,

just wanted to know how you have ended up? I think my son had the same type of seizures and we are now sure it was gluten and caseing causing it. My complete story is written here:

moderator edit ***

And it was a damn struggle with "medicine". He is now in perfect shape without any medicine.

Great to meet you!!
 

DusanV,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.:smileypray:

:hug:

My 10 yr old son started having simple partial seizures in dec. last year. He had a few "biggies" and then settled in to having about one every week. Doc started him on Trileptal which caused a rash and more seizures. ER visit...Keppra. Lots of Keppra. He had a horrible reaction...psychosis and hallucinations...and some time in the ICU. We tried Topamax, Vimpat, Klonapin. Of course we were told to give diastat for his seizures, which seemed to go on for 30-40 minutes ata time. Seizures continued to occur... between twice daily and every other day. He missed over a month of school. sadly, he wasn't the same boy I knew for a decade. He was scared, unfocused, unmotivated, and dull (brain altering meds).

I suspected something more than the doctors offered as an explanation (heads of neurology at children's hospital - we saw several).

A visit to a DO, left us encouraged for the first time in months!

We went gluten free. We tested it by eliminating it for 2 weeks, and reintroducing it with one cookie. Within minutes he was crying. His face was red, palms sweaty, and getting electric shocks and zaps. The next day he was an emotional wreck and unable to concentrate at school. Since then, there have been a few accidental gluten ingestions...all end the same...with an over emotional boy, sweaty palms, electric zaps, stomache pain, and brain fog.

Non-celiac gluten sensitivity or gluten intolerance causes neurological symptoms. Google it.

My boy is back...bright again! He's happy and thriving.

He has an episode about twice a month, but he is back to himself and off all drugs. Our neuro doesn't even care to see him anymore!

So so grateful.