Dietary changes and seizure control

[KarenB]

As for fruits, do you think strawnerry, mango, grapes, watermelon, etc can trigger seizure?

We found out 2 days ago our son front tooth (he fell and hit his front tooth late last year I believe) has infection and dentist suggest to have it taken out ASAP. We are not sure if the seizure caused by the tooth infection though I did a bit of google on web there might be link between seizure and dental health. He had no problem with any fruits before, so just wondering if these fruits can actually trigger the seizure. He had another fall at back of his head late Jan this year, but CT scan shows no abnormality ... not sure if the seizure caused by these 2 falls either ... If the seizure did not caused by the 2 falls ... then we feel its the nutrition deficiency .... we are using the 3 tbsp ccn oil and 1 tbsp MCT oil now, giving epson salt foot bath and transdermal magnesium oil ... will update the progress soon.

Modest amounts of fruit of any kind should not be a problem as long as he doesn't have any allergies to them (swelling of tongue or throat, or hives around mouth after eating) or a fructose intolerance (diarrhea or gas after eating fruit or drinking fruit juice). It's much better to eat fruit than drink the juice, as the juice is usually sweetened, so has a high sugar content which can cause teeth decay and also spike blood sugar (which can trigger a seizure). Berries are an excellent source of antioxidants important for fighting infection and overall health and many other fruits are high in vitamins and antioxidants. The healthier the body overall, the less chance of seizures.

When Jon was on a higher ratio of the Ketogenic diet, the only fruit he could eat was berries and star fruit, as they are low in carbs. Now he eats apple, grapes, watermelon, etc. We haven't tried mango or citrus -- a bit high in carbs and also tend to be high allergen foods. He likes cantaloupe, but was getting pimples around his mouth after eating, so I took that out.

Jon's first seizure was triggered by a fall and bump to the head at age 1. A CT scan and MRI didn't show any damage; however, several neurologists have explained that the fall didn't cause the seizure, but it triggered the seizure.

Any sort of infection of the body can cause inflammation and stress, which could trigger seizures. Especially inflammation in the head area. Jon had a bad sinus infection and ear infection in 2011 that put him into the hospital ICU for 4 days with status epilepticus.

 

[AlohaBird]

Everything Karen said plus a couple of points.

Some people like me have allergy symptoms to milk that are not really severe such as GI distress but are still much better off without the milk. For me the main symptom is sinus congestion particularly apparent when lying down at night. Keeping an open airway is very important for someone like me who has nocturnal seizures.
But the allergic symptoms can be so mild that, if you drink milk all the time, you just think of them as normal. Now I can breathe out of both nostrils at once. Yay!

Another thing you might want to google is the theory of Dr John Symes (dogtorj.com) regarding specifically cow milk. His G.A.R.D. protocol is all about getting rid of excess glutamate and aspartate and giving the gut time to heal so that it can begin absorbing nutrients properly again.
Well cow dairy products have a fairly high level of glutamate but goat or sheep dairy does not.

 

[lnsiu]

According to a researcher (hearsay), told me that -"there are more than 300 compunds one might be allergic to in milk. If it is not lactose or casein, don't bother test for it, just don't drink it."

As a side note: aged cheese does not contain any lactose. A golden opportunity to try out some really nice cheeses - if only lactose is an issue.

 

[MichaelJO7]

I recently read that there seems to be a gene mutation that is very positive for the family in it's whole, but negative for those individuals in the family that get certain diseases from this mutation, these diseases include epilepsy, schizophrenia, bipolar, gluten-intolerance, etc... This would be a broader perspective than just looking at the epilepsy or the autoimmune part, and also positive news for a family hinting that they have a strong positive mutation, linked with some negative aspects for certain individuals within the family.

Epilepsy, schizophrenia, bipolar all seems to benefit from roughly the same alternative treatment, not only that, in some cases can share the same drugs.

Koennen Sie Deutsch sprechen? Ich habe in Deutschland drei Jahren gewonnt wenn ich ein kind war. Ich kann noch ein bischen erinnern.

I have done some research regarding the origin of two of my conditions. Being of Germanic descent accounts strongly for one of them. I have long been "drawn" inwardly to other more northernly countries in Europe. I strongly suspect Finnish blood from a few generations ago runs through my veins.

I developed lactose intolerance about two years ago, and went through the process of eliminating cow's milk, but tolerating cheese, and then finally having to eliminate cheese, almost completely, except for very small amounts. I noticed that Finns have a greater propensity for lactose intolerance.

Your comment suggests a further correlation between my lineage and other genetic corruptions. I can trace my lineage back to East Prussia definitively. There are a number of individuals with neurotransmission deficits, and perhaps structural brain abnormalities, particularly on my father's side. Although my father was born in the US, both of his parents were German, and my mother was German. My mother was in tears when the Berlin Wall came down, as she narrowly escaped East Germany before it went up.

 

[Blonde Angel]

Interesting..
One has the right to research according to their life situation, and yes one should always be provided with well informed stuff that should not be biased and based with objective backup.
I believe in moderation and healthy food choices, what is put in our bodies is fuel to have stuff working harmoniously.
When one has a child that's dependant on them for their wellbeing decisions need to made and it can involve a process of trial and error.

Conventional and complementary methods is what I do but each representative don't like to work together.
I will not do anything that puts my child at risk, if something clearly is not working.
I move on & re evaluate... And the challenge is continued to be worked on again and again
Understand, that what's works for one may not suit another.
Every drug has a side effect no matter what it is.

 

[Jay1]

Antiepileptic Drugs and Seizures - Various Research Papers


The title of the links in this post is same as the title of the published research paper. Please do not go by title alone as it may not accurately reflect the results of the research paper. It is important to read the complete article and then make your own judgment.


(1) Do Antiepileptic Drugs Make Seizures Worse? A Meta-analysis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC321140/


(2) Seizure Exacerbation by Antiepileptic Drugs

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201642/


(3) Aggravation of epilepsy by antiepileptic drugs

http://www.ncbi.nlm.nih.gov/pubmed/16194719


(4) Seizure-inducing effects of antiepileptic drugs: a review

http://www.ncbi.nlm.nih.gov/pubmed/9017023


(5) Antiepileptic drugs as a cause of worsening seizures.

http://www.ncbi.nlm.nih.gov/pubmed/9578007


(6) Antiepileptic drug-induced worsening of seizures in children.

http://www.ncbi.nlm.nih.gov/pubmed/9593229


(7) When antiepileptic drugs aggravate epilepsy.

http://www.ncbi.nlm.nih.gov/pubmed/10722956


(8) Absence and myoclonic status epilepticus precipitated by antiepileptic drugs in idiopathic generalized epilepsy.

http://www.ncbi.nlm.nih.gov/pubmed/16513683


(9) Carbamazepine-exacerbated epilepsy in children and adolescents.

http://www.ncbi.nlm.nih.gov/pubmed/3508708


(10) Spike-and-wave complexes and seizure exacerbation caused by carbamazepine.

http://www.ncbi.nlm.nih.gov/pubmed/11784375


(11) Frontal nonconvulsive status epilepticus associated with high-dose tiagabine therapy in a child with familial bilateral perisylvian polymicrogyria.

http://www.ncbi.nlm.nih.gov/pubmed/11077464


(12) Sudden unexpected death in epilepsy: is carbamazepine implicated?

http://www.ncbi.nlm.nih.gov/pubmed/9733403


(13) Carbamazepine-induced seizures: a case report and review of the literature.

http://www.ncbi.nlm.nih.gov/pubmed/12449849


(14) Absence seizures aggravated by valproic acid.

http://www.ncbi.nlm.nih.gov/pubmed/11488896

 

[AlohaBird]

Link #1:
CONCLUSIONS: Many patients with partial seizures have an increase in seizures when a new AED is added to their therapy. However, it occurs no more frequently when taking drug than placebo. It probably represents the spontaneous fluctuation of seizure frequency. When a patient who has started a new AED deteriorates, this is not necessarily a drug effect.

Link #2 Which is a "study" of six case files about one medication.
Care must be taken when evaluating the literature in regard to potential for exacerbation. Epilepsy, by its very nature, is a waxing and waning condition. Therefore, even if a drug has a neutral effect, some patients will worsen as a result of the natural history of their disease. A few of these patients taken out of the context of a larger sample might give the impression of exacerbation.

Link #3 is a one paragraph abstract with no data at all, just speculative "may" "can" and "most likely" phraseology.

Link #4
An incorrect choice of drugs in the treatment of an epileptic syndrome or seizure type may provoke seizures (as for example the provocation of absences due to carbamazepine or phenytoin). The possible seizure-inducing effect of AEDs has to be differentiated from seizure occurrence due to the natural course of epilepsy.

Link #5
Drug-induced exacerbation of seizures is a serious and common clinical problem that is often unrecognized or overlooked by the treating physician. Its occurrence appears to be related to three possible causes: an incorrect diagnosis of seizure type or syndromic form, lack of knowledge about certain drugs that are contraindicated in specific types of epilepsies, or to prescription of excessive drug dosages and drug combinations.

Link #6
worsening of seizures may be over-hastily ascribed to the introduction of a new AED. Moreover, the seizure and the epilepsy type may have been incorrectly diagnosed. The problem is identification of true aggravation of epilepsy in the absence of overdosage or toxicity.

Link #7
When treating epilepsy, the clinician should act according to seizure type, or, better, to epilepsy type. Patients are usually aware of aggravation before their doctors: we should listen carefully whenever they express a 'dislike' for an AED.

Link #8
Aggravation of idiopathic generalized epilepsy (IGE) syndromes by inappropriate antiepileptic drugs (AEDs) is increasingly recognized as a serious and common problem. Precipitation of status epilepticus (SE) by inappropriate medication has rarely been reported.

Link #9 This study was n=26. What it shows is interesting and worthy of further study but as the authors even said , not enought to say anything one way or the other.
"CBZ is a widely used, effective antiepileptic drug, particularly for partial or partial complex seizures; however, if uncontrolled, generalized seizures occur after CBZ is prescribed for children or adolescents with absence or mixed seizures, a trial of CBZ discontinuation is warranted. The data reported here do not permit calculation of the incidence of this phenomenon."

Link #10 Also about CBZ. Also saying that some individuals don't respond well to it and that EEG monitoring can help sort out those for whom it is not a good fit.

Link #11 This is a case study of one boy with a severe mental handicap who had a bad reaction to one medication. That's all.

Link #12 About SUDEP (Love studies that have a question mark in the title.)
11 out of 14 people who died of SUDEP at the Cardiff Epilepsy Unit were taking CBZ. Does that mean it is causal? Not necessarily.

Link #13 Six case studies.
"VPA can occasionally provoke absence seizure aggravation in patients with absence epilepsy."


OK. So what do we know?

Epilepsy ebbs and flows so it is hard to tell what is the result of what . Correlation =/= causation.
Doctors need to be sure to prescribe the right med for the right type of epilepsy. When the wrong med is prescribed, seizures can worsen.
Doctors need to be mindful of potential drug interactions.
Doctors need to avoid higher than necessary doses and unnecessary poly-therapy.
Individuals sometimes react badly to any medication. Care should be taken to listen to the patient's complaint's and not just tell them to shut up and take their pills.

Several of those articles involve CBZ. I think that means I won't be telling my neuro to prescribe that one. for me any time soon but it is not a condemnation of all AEDs. That one should definitely be studied some more.

So, in certain individual people, under certain circumstances, taking certain AEDs can worsen certain types of seizures.

But Jay, that is a far cry from saying AEDs cause seizures. Try to avoid the blanket generalizations, please.

 

[KarenB]

Conventional and complementary methods is what I do but each representative don't like to work together.
I will not do anything that puts my child at risk, if something clearly is not working.
I move on & re evaluate... And the challenge is continued to be worked on again and again
Understand, that what's works for one may not suit another.
Every drug has a side effect no matter what it is.

To this end, I have found it very helpful to keep an ongoing log for my son. It has 3 columns. One column is for seizure activity and any illnesses, such as a flare-up of his IBD, one column is for any dietary changes made, or supplements added in or taken out, and one column is for any changes made to meds (including meds that are not AEDs and including immunizations).

Doing so helped me determine what was really working (for instance, adding in fish oil and MCT oil, and weaning Diazepam, and Keppra) and also helped me identify certain foods that were triggering his IBD and even one food (eggplant) that actually was triggering seizures, even though he didn't display allergic symptoms.

 

[HopeCoconutWorks]

Hi Karen,

How do you know eggplant trigger seizure? Did Jon get any twitching or jerking right after he ate the eggplant? Also, I wonder how often you give foods to Jon to maintain his ketone? I am sure just having coconut oil wont work for reducing frequncy of seizure .... but how often should we feed our kid? I know this is dumb question but I really wish to know. Thank you.

 

[Bidwell]

HopeCoconutWorks. I THINK YOUR QUESTION IS VERY INTELLIGENT AND IMPORTANT. IT IS NOT A DUMB QUESTION! The only problem is that in the end YOU may be the only person who can figure it out.

 

[KarenB]

Link #1:
CONCLUSIONS: Many patients with partial seizures have an increase in seizures when a new AED is added to their therapy. However, it occurs no more frequently when taking drug than placebo. It probably represents the spontaneous fluctuation of seizure frequency. When a patient who has started a new AED deteriorates, this is not necessarily a drug effect.

[/B]"

This study said that 40% of patients in this study experienced an increase in seizures when on the placebo, and that some patients also experienced an increase in seizures when on AEDs. The wording "it occurs no more frequently when taking drug than placebo" indicates that this happens 40% of the time or less.

What I take away from that is not the "ebb and flow" of epilepsy, but rather, if a particular treatment (or non-treatment) is NOT effective to stop the seizures, then the natural consequence is an increase in seizures. It's well known that seizures breed seizures.

That being said, I do believe that for some patients, certain medications do cause an increase in seizures -- this is documented in children with Dravet Syndrome.

Also, that's why I keep a log. For Jonathan, I'm convinced that Diazepam and Keppra caused MORE seizures.

Several years ago, while on the Keto diet but no meds, and after being seizure free for one year, Jon had a relapse of seizures following a bad tummy bug. Jon was prescribed Zonegran, which stopped his tonic-clonics dead in their their tracks. He's not had one since. But it didn't stop the tonics. So, we know that Zonegran was effective for at least one seizure type.

He continued having an average of 3 tonic seizures a day, and so we added in fish oil and magnesium. The day before we added that in, he had 6 seizures, and the day after he had none (his first seizure free day in 2 weeks). After adding in these supplements, he continued for the next two weeks with either 1 seizure a day or none. It was apparent that at least one of the two supplements were working, but we were curious as to which one, so we experimented with taking the fish oil out again, and he instantly went back to 3 seizures a day. We added it back in and they decreased back to one a day or none. We did this three times, enough to convince us that the fish oil was working, and it wasn't simply the ebb and flow of seizures. (We did not do it with the magnesium, because it was really helping his sleep, so we were going to keep it around anyway).

Even though the fish oil (and maybe magnesium) helped reduce the seizures by about 70%, he was still having about 4 a week, so (against my better judgement) his neurologist put him on Diazepam. His seizures instantly increased to an average of 2 a day and remained that way for the next month.

So, then the doctor added in Keppra (once again, against my better judgement, because now we were up to 3 meds plus the diet, plus, he'd been on Keppra when he was 1 year old, and it didn't work then). Within a week, he was having 9 seizures a day, and his lips were blue (in between seizures) from lack of oxygen, and he had to be admitted. While in the hospital, they were giving him the Diazepam and Keppra by IV, but at different times. Whenever they would give him Keppra, he would have a seizure within the next 30 minutes.

It was at this point that I convinced the doc to let us wean him off of both meds and just stay on the Zonegran and diet. He agreed, but we had to wean to Diazepam first, being a benzodiazapine and harder to wean the longer one is one it. That process took 2 months, but the less Diazepam the less seizures. He began having more and more seizure free days.

It was at this point that we started working with a pediatrician/nutritionist to tweak the diet, and treat the Inflammatory Bowel Disease that may have been aggravated by the intestinal virus and which was the cause of the seizure relapse. So, we got the diarrhea stopped, finally, about the same time that the Diazepam wean completed.

Then we weaned the Keppra, and the weaning was hard, because every time we did a taper he'd have a cluster of seizures, but we persevered, and finally he was off the Keppra, and his last seizure was one week after his last dose of Keppra. He's since been seizure free for 2 1/2 years on the Keto diet and Zonegran (and he's almost completely weaned off the Zonegran now, so it's pretty much just the Keto diet maintaining seizure control).

 

[Jay1]

There is one more interesting thing that has happened. As you know, I give 5-6 tablespoons coconut oil everyday to my 9 year old son. I did not think that it was fair to single him out and have been taking similar amount of coconut oil myself. There has been no other change in my lifestyle. In fact, my stress levels have increased from watching my son like a hawk. But, the stress levels are also coming down as my son continues to remain seizure free (big change from having 3-4 hour long status epilepticus with generalized tonic clonic full body jerking twice within 20 days). Thanks to everyone's prayers on this forum.


Here are my own cholestrol levels.


Two years ago - Total Cholestrol was 229 and HDL was 48

Six months ago - Total Cholestrol was 239 and HDL was 47

Today - Total Cholestrol is 188 and HDL is 58



There has been 21.33% decrease in Total Cholestrol and 23.40% increase in HDL during last 6 months. Has someone else experienced something like this?

 

[MichaelJO7]

Jay1,

I do find that interesting. My total cholesterol last time I checked, was 229 (?), but it has been as high as 279. However, my HDL and LDL are reversed from yours, so it is considerably out of whack. I have always had a low cholesterol diet, and it is common for individuals with hypothyroidism to have cholesterol issues, so my body is simply creating too much cholesterol.

I am presently reading a molecular biology book, and am narrowing down the cause of my diabitic type seizures which occur when I have not eaten for a while. In case you've missed my posts, my glucose and A1 are almost always in range since I began checking a few years ago.

I have suspected a fat metabolism malfunction, which prevents me from ever getting into ketosis. I suspect that ATP is not being synthesized when my stomach is empty, which is suppose to occur through a process called gluconeogenesis. ATP is supposed to be synthesized when the body is fasting, as the body draws from fat stored from adipose. There may also be a problem with lipases, and possibly phospholipids, the latter which alllow fats to bind to a water base molecule, which is necessary for fat transport in the bloodstream, since the blood is primarily water.

I read AlohaBird's recommended book, "Know Your Fats," which has helped me narrow down the cause of my diabetic type seizures. Your lower cholesterol levels with your higher saturated fat intake are consistent with the author's understanding of fats.

 

[KarenB]

Hi Karen,

How do you know eggplant trigger seizure? Did Jon get any twitching or jerking right after he ate the eggplant? Also, I wonder how often you give foods to Jon to maintain his ketone? I am sure just having coconut oil wont work for reducing frequncy of seizure .... but how often should we feed our kid? I know this is dumb question but I really wish to know. Thank you.

My trusty log...for awhile, when the seizures were bad, I was writing down every thing he ate, and we noticed, 3 different times, that he had a seizure within 30 minutes of eating eggplant. Other than that, he didn't have other symptoms of being allergic -- like hives. And, he'd eaten eggplant all his life without problems, but for some reason, ever since he got that bad intestinal virus in 2012, he's developed allergies or intolerance to a number of foods.

I do not recommend starting a child on the Ketogenic Diet at home or without the guidance and training of a dietitian. Many children, when they first go into ketosis, experience a plummet in their blood sugar which can be a real medical crisis if not caught and treated immediately. Other children go into acidosis. This is why most children are initiated in the hospital, with labs being run 2 or 3 times a day for the first 3 or 4 days.

Having said that, I do believe that many children with seizure disorders can benefit from some changes to their diet that would not put them into ketosis and could be done at home, and would result in a healthier child. The first thing I would do would be to make sure my child was eating a healthy diet with at least 2 servings of veggies or fruit with every meal, and with some sort of green leafy veggie every day and that he/she was eating fast food or junk food only on very rare occasions. If I had it to do over, I would keep a log of dietary changes and number of seizures, and probably start by just taking out gluten (such as bread, pasta, pizza dough, etc.). I would do that for a week or two and see if it makes any difference. Then I would take out sugar -- all cookies, twinkies, sweetened drinks, sweetened yogurt, sweet cereals, barbeque sauce, chinese food with heavy sugary sauces, etc. After this, I might try adding in fish oil and/or coconut oil. If, by this stage, the seizures stopped, I'd just stick with that plan, which could be followed for years.

If the seizures reduced, but didn't completely stop, I would surmise that my child would probably benefit from the more strict Ketogenic Diet, and I would pursue finding a neurologist and dietitian who would work with that.

 

[KarenB]

There is one more interesting thing that has happened. As you know, I give 5-6 tablespoons coconut oil everyday to my 9 year old son. I did not think that it was fair to single him out and have been taking similar amount of coconut oil myself. There has been no other change in my lifestyle. In fact, my stress levels have increased from watching my son like a hawk. But, the stress levels are also coming down as my son continues to remain seizure free (big change from having 3-4 hour long status epilepticus with generalized tonic clonic full body jerking twice within 20 days). Thanks to everyone's prayers on this forum.


Here are my own cholestrol levels.


Two years ago - Total Cholestrol was 229 and HDL was 48

Six months ago - Total Cholestrol was 239 and HDL was 47

Today - Total Cholestrol is 188 and HDL is 58



There has been 21.33% decrease in Total Cholestrol and 23.40% increase in HDL during last 6 months. Has someone else experienced something like this?

Jonathan's cholesterol levels were perfect when he started the diet, and they remained so for the first couple years on the diet, with about 20 to 30 grams of fat per meal. He wasn't getting coconut oil or MCT oil in the beginning, but he was getting eating a lot of olives and olive oil and avocados for his primary fat source and a modest amount of dairy fat and a small amount of meat fat. Then, we were living overseas for awhile, and, because of availability, I switched to more dairy fat and that's also when we started the MCT oil. At that time, his cholesterol and tryglicerides did go up to unhealthy levels. So, we cut out most of the dairy fat, except for about 1 ounce of cheese every day or so, and his neurologist added in a carnitene supplement, and that brought it right back down to normal levels. We later took the carnitene out, and his cholesterol still looks great. His primary fats now are MCT and olive oil and coconut oil, almond flour and flaxseed meal, pecans, olives, cheese, and mayonnaise.

ETA: Toronto Children's Hospital did a chart review of the children who had been managed on the Ketogenic diet at their hospital. They identified 12 children who had unhealthy high cholesterol/triglyceride levels when they started the diet. They discovered that after 9 months on the diet, 75% of these children were down to normal total cholesterol levels. http://www.ncbi.nlm.nih.gov/pubmed/23427065

 

[KarenB]

Antiepileptic Drugs and Seizures - Various Research Papers


(2) Seizure Exacerbation by Antiepileptic Drugs

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201642/

(9) Carbamazepine-exacerbated epilepsy in children and adolescents.

http://www.ncbi.nlm.nih.gov/pubmed/3508708


(10) Spike-and-wave complexes and seizure exacerbation caused by carbamazepine.

http://www.ncbi.nlm.nih.gov/pubmed/11784375


(12) Sudden unexpected death in epilepsy: is carbamazepine implicated?

http://www.ncbi.nlm.nih.gov/pubmed/9733403


(13) Carbamazepine-induced seizures: a case report and review of the literature.

http://www.ncbi.nlm.nih.gov/pubmed/12449849

All of these links indicate Carbamazepine (Tegretol) as a culprit in increasing seizures in some individuals. I think most neurologists steer clear of this drug nowadays, but a few are still prescribing it. This drug is definitely on the "no-no" list (along with Lamictal and Phenobarbital) for children with Dravet Syndrome. http://www.ncbi.nlm.nih.gov/pubmed/21463285

I also note a repeated mention of benzodiazepines (not necessarily the links just above, but in the complete list provided by Jay 1) as causing paradoxical reactions (I believe in children mostly). As I mentioned in my very long post #191, we did see an increase in seizures with Diazepam, and a corresponding decrease when we weaned it, and also, he became extremely hyperactive (to the point that he couldn't even sit still on the toilet long enough to finish his business) -- and Diazepam is Valium -- it's suppose to calm people down.

 

[AlohaBird]

This study said that 40% of patients in this study experienced an increase in seizures when on the placebo, and that some patients also experienced an increase in seizures when on AEDs. The wording "it occurs no more frequently when taking drug than placebo" indicates that this happens 40% of the time or less.

What I take away from that is not the "ebb and flow" of epilepsy, but rather, if a particular treatment (or non-treatment) is NOT effective to stop the seizures, then the natural consequence is an increase in seizures. It's well known that seizures breed seizures.

That being said, I do believe that for some patients, certain medications do cause an increase in seizures -- this is documented in children with Dravet Syndrome.

Also, that's why I keep a log. For Jonathan, I'm convinced that Diazepam and Keppra caused MORE seizures.

But if it occurs equally frequently with or without an AED in the mix, how can you be sure it has anything to do with the AED?
I totally agree that ineffective treatment leads to more seizures but that was not what Jay was positing.

You keep wonderful records and I have no doubt that what you say is true in the case of your son.
What I was trying to get Jay to realize is that the links he was tossing up in such a flurry were not supporting the premise that he said they were. His premise was AEDs (not specific ones for specific types of epilepsy in specific people) cause seizures. He was not making any of those distinctions. His was a broad brush generalization.

I am usually the one around here posting about how evil AEDs are and how much I want to get off of mine as soon as possible. Those are my personal beliefs regarding my case of epilepsy. So, I am not the one who needs convincing.

As long as Jay keeps claiming to have PROOF and then delivers links that either contradict or fail to support his premise, he is not going to be taken very seriously.



ETA: Tegretol was the first drug I was ever prescribed. It didn't help any and made me feel like I had been hit by two buses instead of just the one from the seizures. Urg.

 

[Jay1]

Hi Karen,

How do you know eggplant trigger seizure? Did Jon get any twitching or jerking right after he ate the eggplant? Also, I wonder how often you give foods to Jon to maintain his ketone? I am sure just having coconut oil wont work for reducing frequncy of seizure .... but how often should we feed our kid? I know this is dumb question but I really wish to know. Thank you.

KarenB has explained in a wonderful and perfect way. Her wisdom and experience continues to provide confidence to me that I am on right track.

Right quantity of MCT oil (same as coconut oil) alone was enough in stopping seizures in Vanderbilt University research and another study of 145 kids in clinical trials in London Hospital. I will still add at least some quantity of coconut, turmeric and fish oil as early as possible. These things are neurogenerative and will nourish the brain neurons even in a person with no seizures. Let the brain heal or become better sooner rather than later.

I happened to read somewhere that overuse of Medium chain fatty acids will not cause ketoacidosis. However, overuse of Long chain fatty acids such as animal cheese, butter and milk can cause ketoacidosis. I have reduced long chain fatty acids in my son's diet.

Junk food - One definitely needs to take them out completely.

 

[Jay1]

But if it occurs equally frequently with or without an AED in the mix, how can you be sure it has anything to do with the AED?
I totally agree that ineffective treatment leads to more seizures but that was not what Jay was positing.

You keep wonderful records and I have no doubt that what you say is true in the case of your son.
What I was trying to get Jay to realize is that the links he was tossing up in such a flurry were not supporting the premise that he said they were. His premise was AEDs (not specific ones for specific types of epilepsy in specific people) cause seizures. He was not making any of those distinctions. His was a broad brush generalization.

I am usually the one around here posting about how evil AEDs are and how much I want to get off of mine as soon as possible. Those are my personal beliefs regarding my case of epilepsy. So, I am not the one who needs convincing.

As long as Jay keeps claiming to have PROOF and then delivers links that either contradict or fail to support his premise, he is not going to be taken very seriously.



ETA: Tegretol was the first drug I was ever prescribed. It didn't help any and made me feel like I had been hit by two buses instead of just the one from the seizures. Urg.

Hi AlohaBird,

I agree completely with you that everyone needs to do their own research and reach their own conclusion. I will only post links with the titles mentioned by the author. It will eliminate my own personal bias.

I tried to edit the verbiage in my earlier posts containing links but it is not allowing me to edit.

How is the school system in Hawaii? I guess it will be any day better than Chicago.

Thanks for your help.

Regards,
Jay

 

[Jay1]

I noticed from the polls that majority of the people do not take coconut oil.



Here are four people who have been taking coconut oil regularly.

(1) My own son - 5 or more tablespoon
(2) AlohaBird - 3 tablespoon
(3) HopeCoconutWorks 's son - 3 tablespoon
(3) Bidwell - 2 tablespoon

It will be quite interesting to track the progress of these four folks over the next couple of months to find out if the coconut oil kept any kind of seizures away.

I was also wondering about the blood ketone levels of AlohaBird, HopeCoconutWorks 's son and Bidwell. My son's blood ketone level is 2.56