Dietary changes and seizure control

[HopeCoconutWorks]

Hi All,

While still trying to help my 5 yrs old son recover from seizure, below are my finding in regards of natural treatments. I am new so cannot post links but pls google below and you will find a lot of info and forum people input their experiences for seizure treatments.

B6, B12, Omega 3, Zinc, Magnesium, Vitamin D, Pottasium and seizure.
Coconut oil and Seizure, woman uses coconut oil to stopped seizure.

Hope it can help all of us.

 

[Cint]

sorry, Cint ...

i first reply ur posted by clicked on Quote .... new to the site.

I did read your reply and understood your answer. I was asking about the Glucose levels when talking about hypoglycemia. I'm happy to hear you are taking your son to a nutritionist. Hopefully you will get the answers you deserve from an educated source. Also, have you thought about seeing a pediatric endocrinologist?

 

[HopeCoconutWorks]

Hi Jay1,

Forgot to ask ... how long have you notice ur son is back to normal after consume coconut oil and Magnesium? Are you give him juices like OJ, apple juice, etc? How about cheese? you cut off all dairy products like butter, cream, etc or just milk ? Thank you.

 

[Nakamova]

Hi HCW --

The nutrients you mention are all associated with brain health, and worth exploring.
We have a "Diet" related subforum that you may be interested in browsing:
http://www.coping-with-epilepsy.com/forums/f39/
This link will take you to threads that reference magnesium:
http://www.coping-with-epilepsy.com/forums/tags/magnesium.html
and here's a recent one on magnesium to check out:
http://www.coping-with-epilepsy.com/forums/f23/revisiting-magnesium-25241/

 

[Fedup]

Jay1

I am sorry if I misunderstood your intentions, but to try and tell people something will work for them and cure them if they only listen to you and what you say is right, irrespective of the fact that others will already have done the same research. There have been and will be many discussions on things here which can or may affect other people but it is not a given that the side effects I have to a medication will be the same side effects you get when you try that medication. It stands to reason then that what has helped reduce your seizures or as you say "eliminate" them may not work for me or somebody else but that does not mean we cannot try to find out for ourselves, all advice is greatly and warmly welcomed by everybody, even me.

I never had seizures and epilepsy nor knew someone with seizures and epilepsy. I did not even understand the word seizure six months ago. Watching my son having seizures has been the worst experience of my life. This is much more painful than having seizures or epilepsy myself. I would gladly trade seizures or epilepsy with my son if it meant that my son remains healthy. I would not even wish seizures or epilepsy on my worst enemy.

Jay you might be right, it may be much more painful watching a seizure or at lest you may think that but I disagree. You watch a seizure but you do not go through it, so you will never understand what its like, you do not got all the aches and pains, biting the thong, the headaches, the not knowing or the rest so from my point of view you got it pretty easy.

Imagine having a powerful desktop computer with powerful CPU and graphic cards. But the power supply is a measly 300 Watts. This computer will keep on rebooting. Increase the power supply to 800 Watts and the rebooting will go away.

The easiest way of describing epilepsy is to say it is an electrical storm or "Epileptic seizures are the result of excessive and abnormal cortical nerve cell activity in the brain" can you imagine what would happen to a 800 watt computer if it encountered an electrical storm. There would be no rebooting.

Here is the analogy - Your brain is this powerful computer. However, the brain is not getting enough energy which causes it to reboot (seizures) many times. Increase the power to powerful computer in your brain and rebooting will stop.

So you have a powerful computer (or the Brain) which encounters an electrical storm, the result is the cpu and everything is destroyed. Much the same happens with a seizure.

The key question is "How do we increase power to your brain and develop new neurons?" I believe anything which accomplishes above will reduce or eliminate seizures in most of the cases.

The question is not how you increase the power but how you stop the storm.

 

[Jay1]

Hi Jay,

OJ = Orange Juice.

What kind of blood work you have ur son made every 2 months? Does it include all vitamins and minerals checking? is there a name for such blood work?

HopeCoconutWorks,

I have come to know about epilepsy and seizures only in last 6-7 months. What worked for my son may not work for your son. Your son is 5 years old and my son is 9 years old. My son did not get seizures in last six months but it does not mean that my son may not get them in future. I just pray that my son and your son does not get seizures in future.

I have been reading AlohaBird's posts - She has excellent knowledge and her posts are very correct and informative. You should seek AlohaBird's advice. She also lives in Hawaii where only wonderful people live. Even though it has been two years but I still remember sandy beaches of Waikiki and my numerous travels on 55 route bus. I also intend to seek her advice.



As for blood tests, please see the information below. All the tests show normal range in humans and actual value. (It is a copy and paste of actual test results for my son and were done a few days ago. That is why you will see lot of Capital letters below. My apologies)



(1) COMPREHENSIVE METABOLIC PROFILE

Component Standard Range Your Value
SODIUM, PLASMA OR SERUM 134 - 146 mEq/L 139
POTASSIUM, PLASMA OR SERUM 3.7 - 5.5 mEq/L 3.6
CHLORIDE, PLASMA OR SERUM 98 - 108 mEq/L 98
CARBON DIOXIDE (CO2), PLASMA OR SERUM 23.0 - 30.0 mEq/L 22.3
GLUCOSE, PLASMA 70 - 110 mg/dL 104
BLOOD UREA NITROGEN (BUN), PLASMA OR SERUM 7.0 - 18.0 MG/DL 12
CREATININE, PLASMA OR SERUM 0.25 - 0.84 mg/dL 0.39
NEW METHOD: ENZYMATIC IDMS-TRACEABLE
CALCIUM, TOTAL, PLASMA OR SERUM 8.8 - 10.8 mg/dL 10.2
PROTEIN, TOTAL, PLASMA OR SERUM 6.0 - 8.0 g/dL 8.8
ALBUMIN, PLASMA OR SERUM 3.4 - 4.8 g/dL 4.8
BILIRUBIN,TOTAL, PLASMA OR SERUM 0.2 - 1.0 mg/dL 0.5
ALKALINE PHOSPHATASE, PLASMA OR SERUM 64 - 339 IU/L 226
ALANINE AMINOTRANSFERASE (ALT) (GPT), PLASMA OR SERUM 2 - 30 IU/L 45
ASPARTATE AMINOTRANSFERASE (AST)(GOT), PLASMA OR SERUM 18 - 57 IU/L 41



(2) CBC & AUTO DIFF /H - Details


Component Standard Range Your Value
WHITE BLOOD CELLS 4.5 - 13.5 thou/uL 7.08
RED BLOOD CELL COUNT 4.00 - 5.20 mil/uL 5.06
HEMOGLOBIN, BLOOD 11.5 - 15.5 g/dL 15.0
HEMATOCRIT, BLOOD 35 - 45 % 42.4
MEAN CORPUSCULAR VOLUME 77.0 - 95.0 fL 83.7
MEAN CORPUSCULAR HGB 25.0 - 33.0 pg 29.7
MCHC 31.0 - 37.0 g/dL 35.5
RBC DIST WIDTH 12.5 - 16.0 % 12.7
PLATELETS, BLOOD 150 - 450 thou/uL 376
MEAN PLATELET VOLUME 7.4 - 10.4 fL 7.1
DIFFERENTIAL Automated Differential Performed
NEUTROPHILS, ABSOLUTE 1.7 - 9.715 thou/uL 3.220
LYMPHOCYTES, ABSOLUTE 1.2 - 7.83 thou/uL 3.190
MONOCYTES, ABSOLUTE 0.15 - 1.45 thou/uL 0.560
EOSINOPHILS, ABSOLUTE 0.0 - 0.725 thou/uL 0.030
BASOPHILS, ABSOLUTE 0.0 - 0.29 thou/uL 0.080
NEUTROPHILS: 31 - 61 % 45.6
LYMPHOCYTES: 28 - 48 % 45.0
MONOCYTES 3 - 10 % 7.8
EOSINOPHILS 0 - 5 % 0.4
BASOPHILS 0 - 2 % 1.2



(3) TRIGLYCERIDES, SERUM - Details


Component Standard Range Your Value
TRIGLYCERIDES, PLASMA OR SERUM 30 - 74 mg/dL 72
The following recommendations are based on the National Cholesterol Education
Program.
Children aged <10 y:
High: > or = 100 mg/dL
Borderline high: 75-99 mg/dL
Desirable:< or = 74 mg/dL
The following recommendations are based on the National Cholesterol Education
Program.
Children aged 11-18 y
High: > or = 130 mg/dl
Borderline high: 90-129 mg/dL
Desirable: < or = 89 mg/dL
The following recommendations are based on the National Cholesterol Education
Program.
Adults aged 19+ y:
Very high: > or = 500 mg/dL
High: 200-499 mg/dL
Borderline high: 150-199 mg/dL
Desirable: < or = 149 mg/dL


(4) Carnitine,Plasma - Details


Component Standard Range Your Value
TOTAL CARNITINE 28 - 83 umol/L 51.9
FREE CARNITINE 22 - 66 umol/L 30.7
ACYLCARNITINE, PLASMA 3 - 32 umol/L 21.2
ACYLCARNITINE:FREE CARNITINE, 0.1 - 0.9 umol/L 0.7
COMMENT Normal plasma carnitine levels.
Joel Charrow, M.D.
Performed at Ann & Robert H. Lurie Children's Hospital of Chicago Laboratory,
2515 N. Clark St,Chicago,IL 60614
NOTE: This test was developed and its performance characteristics determined by the
clinical mass spectrometry laboratory at Ann & Robert H. Lurie Children's
Hospital of Chicago. This test has not been cleared or approved by the U.S.
Food and Drug Administration.


(5) MAGNESIUM,SERUM - Details


Component Results
Component Standard Range Your Value
MAGNESIUM, PLASMA OR SERUM 1.8 - 2.4 mg/dL 2.2


(6) CHOLESTEROL, TOTAL, SERUM

Component Standard Range Your Value
CHOLESTEROL, TOTAL, PLASMA OR SERUM 100 - 169 mg/dL 164
The following recommendations are based on the National Cholesterol Education
Program.
Children aged 0-18 y
High: > or = 200 mg/dL
Borderline high: 170-199 mg/dL
Desirable: < or = 169 mg/dL
The following recommendations are based on the National Cholesterol Education
Program.
Adults aged 19+ y:
High: > or = 240 mg/dL
Borderline high: 200-239 mg/dL
Desirable: < or = 199 mg/dL


(7) BETA HYDROXYBUTYRATE, SERUM


Component Standard Range Your Value
BETA-HYDROXYBUTYRATE, SERUM 2.10
Reference range: PEDIATRIC: 0.04 to 0.18
Unit: mmol/L

Test Performed at:
Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, CA 92675-2042 J M Nakamoto MD, PhD




The last (#7) test in blue color is very important and shows the levels of ketones in the blood. If someone did not have ketones in blood, the value will be less than 0.20. Chances of having seizures are reduced drastically if the ketone numbers are higher. Strict classic ketogenic diet is very hard to manage in long term and can provide ketone levels up till 5.0



Alohabird, I also need your advice about the different things that I should watch out in future.


Thanks for your help and have a great day.

Regards,
Jay

 

[masterjen]

Jay;
I am glad you respect Alohabird's knowledge and opinions and feel she could help your son, but she is not a medical professional who can dispense specific advice. None of us here are. We can only offer the benefit of our experience with seizures, doctors, medications, etc. Everything you read on this site should be regarded as information and ideas, not as prescriptive advice. While you presented some information regarding your son's test results, we are not in a position to interpret it; that is a doctor's job. There would be a huge liability issue if someone here who doesn't have practitioners degree gave you specific advice on a treatment protocol, as that treatment may in fact do harm. Take this site as a source of general information, just as you would with any internet site.

 

[HopeCoconutWorks]

Hi Jay1,

Thanks for the reply. I do not see any green color in the blood work report ... Can you tell me which one is it?

I have full confident in coconut oil because it works for my son for 10 days! I am pretty sure he is magnesium deficient as the Magnesium Oil stopped the twitching and jerking right away after I applied on him. With coconut oil, he was seizure free for 10 days. But it comes back mainly because I did not give any Magnesium and Coconut Oil that day ... and start giving him milk ... I am now back to original point and not giving him any milk, we will see. Me too not sure what will happened if he stopped taking magnesium and coconut oil after long term use ... say 1 - 2 years ... will the seizure comes back? ... I don't know. But one thing I know that Magnesium and Coconut oil are both natural elements and I feel safe and fine with it if we need to take it for the rest of our life.

There is a site ... go to CoconutOil.com ... Page 4 ... there is a news about WebMD allowed users post their experience using Coconut Oil ... worth reading. 1 girl is using it to stopped her seizure, which is not the first news I have seen using Coconut Oil to stopped seizures. Coconut Oil has numerous of health benefits and I plan to take it myself as well. Another video I now remember ... search for CBN Coconut Oil ... several people have reversed condition after using Coconut Oil ... but it's Alzeimer and Parkinson I think ... anyway, lots of posting also experiencing coconut oil helps stopped seizures. I am using Extra Virgin Cold Pressed Unrefined Coconut Oil. I believe we all are hoping natural treatment will work to cure this disorder. Hope this helps.

 

[Jay1]

Jay;
I am glad you respect Alohabird's knowledge and opinions and feel she could help your son, but she is not a medical professional who can dispense specific advice. None of us here are. We can only offer the benefit of our experience with seizures, doctors, medications, etc. Everything you read on this site should be regarded as information and ideas, not as prescriptive advice. While you presented some information regarding your son's test results, we are not in a position to interpret it; that is a doctor's job. There would be a huge liability issue if someone here who doesn't have practitioners degree gave you specific advice on a treatment protocol, as that treatment may in fact do harm. Take this site as a source of general information, just as you would with any internet site.

Hi masterjen,

I understand that none of us are medical professionals and can not interpret results. However, the results provide normal range and will alert us if something is out of range.

For example, normal range of magnesium is between 1.8 - 2.4 mg/dL and will flag a concern if it is 1.0 mg/dL.


I pasted my son's test because HopeCoconutWorks asked about the kind of tests that my son has undergone. Hope it provides her some knowledge about the tests that she might request neurologist for her 5 year old son.

Thanks,
Jay

 

[Jay1]

Hi Jay1,

Thanks for the reply. I do not see any green color in the blood work report ... Can you tell me which one is it?

I have full confident in coconut oil because it works for my son for 10 days! I am pretty sure he is magnesium deficient as the Magnesium Oil stopped the twitching and jerking right away after I applied on him. With coconut oil, he was seizure free for 10 days. But it comes back mainly because I did not give any Magnesium and Coconut Oil that day ... and start giving him milk ... I am now back to original point and not giving him any milk, we will see. Me too not sure what will happened if he stopped taking magnesium and coconut oil after long term use ... say 1 - 2 years ... will the seizure comes back? ... I don't know. But one thing I know that Magnesium and Coconut oil are both natural elements and I feel safe and fine with it if we need to take it for the rest of our life.

There is a site ... go to CoconutOil.com ... Page 4 ... there is a news about WebMD allowed users post their experience using Coconut Oil ... worth reading. 1 girl is using it to stopped her seizure, which is not the first news I have seen using Coconut Oil to stopped seizures. Coconut Oil has numerous of health benefits and I plan to take it myself as well. Another video I now remember ... search for CBN Coconut Oil ... several people have reversed condition after using Coconut Oil ... but it's Alzeimer and Parkinson I think ... anyway, lots of posting also experiencing coconut oil helps stopped seizures. I am using Extra Virgin Cold Pressed Unrefined Coconut Oil. I believe we all are hoping natural treatment will work to cure this disorder. Hope this helps.

My apologies for my mistake. The color is blue and is #7. I have corrected my post.

There was a clinical research done in 4 children hospitals in London, UK. The size was 145 children. It showed that the maximum protection is achieved when daily intake of coconut oil is at least 40% of the entire calories in one day. The study found MCT oil (coconut oil) diet to be better than the classic ketogenic diet in controlling seizures.

 

[HopeCoconutWorks]

Thanks Jay1,

So your son ketones is still below reference range?

Yeah, I think I saw the article before ....

 

[Jay1]

Thanks Jay1,

So your son ketones is still below reference range?

Yeah, I think I saw the article before ....

I guess you meant to say higher levels.

My son's ketone level is 2.10 mmol/L.

People not having ketones in the blood have this value between 0.04 and 0.18 mmol/L

 

[AlohaBird]

Hi Jay,
I would be happy to help out in any way I can. I appreciate the confidence you have in my opinions. As masterjen pointed out, my doctorate is in Education not in medicine. That said, I do know more about the ketogenic diet than any neurologist I have met. Not bragging, I just do. I've studied it and lived it for years. If I can share some of what I have read and experienced, I don't see the harm in that. Isn't that what we are all here for?

And yes, you are right, only wonderful people live in Hawaii

The biggest faults in the classic ketogenic plan were, IMO:

1)Too high reliance on milk products. This caused kidney stones due to excess calcium/insufficient magnesium. Also led to constipation.

2)Allowing processed junk in as long as it met the macronutrient requirements. This led to a lot of bacon (with the nitrates) and mayo and lunchmeat. Not healthy for anybody.

3)Letting in "seed oil and bean oil" fats. I don't call them "vegetable oil" because there is no such thing as a vegetable oil. Have you ever seen broccoli oil? These disgusting oils are industrially extracted and processed often using harsh chemicals such as solvents and bleach. Examples are canola, cottonseed, corn, and soy oils.

4)If fat is going to be a large part of one's calories, care needs to be taken to source fats really well. Grass fed, free range, all organic.

My ketogenic eating is :

Grass fed meat. Locally grown beef, venison and occasional wild boar
Wild caught seafood. Yumm.
Farm fresh free range eggs
organic and locally grown veggies and fruits
nuts
dark (100% cocoa) chocolate
all parts of the coconut (meat, flour, milk, cream)
occasional goat cheese as a treat

Cooking oils are :

Coconut
ghee (from grass fed cows)
macadamia nut oil (local)
moringa (also a local plant)
sesame oil for ahi poke

 

[Ruth]

My 9 year old son had two 3 hour long grand mal seizures and the doctors could not control it even after pumping lot of medicines in my son's body. My son has not had any kind of seizure in last 6 months.

Hi Jay1, Your nine year old son had Status Epilepticus. I have had that kind of epilepsy 4 times in my life. My husband was told that I was going to die each time.

If you want to look up nutrition look up Epilepsy Forum Library about Robin and her daughter. She raised her daughter with nutrition. Her daughter is an excellent ice skater.

I will look it up for you.

 

[AlohaBird]

Ruth, do you perhaps mean RobinN ? She quit posting before I arrived but I have read a lot of her posts and respect her knowledge base and experience greatly.
She also had the experience of dealing with pediatric epilepsy which is something I don't. She would indeed be a good resource for Jay and HCW.

I have tried to contact her but have not gotten any answer. This is her profile page.

http://www.coping-with-epilepsy.com/forums/members/robinn/

 

[Ruth]

Yes, I mean RobinN. Her daughter's name is Rebecca. I see her reply once in a while here in the forum.

The links did not come in: too find RobinN and Rebecca go to Epilepsy Forum then scroll down to the Library, it's in the History section.

 

[HopeCoconutWorks]

Hi Jay1,

I am little confused. So the ketones level is high for your son, its bad ... right? is it because too much coconut oil consumption? I google the ĺevel reference and is says:

"The reference range is less than 0.4-0.5 mmol/L.[1, 2, 3] Levels of more than 1 mmol/L require further action, whereas levels of more than 3 mmol/L require immediate medical review."

 

[Jay1]

Hi Jay1,

I am little confused. So the ketones level is high for your son, its bad ... right? is it because too much coconut oil consumption? I google the ĺevel reference and is says:

"The reference range is less than 0.4-0.5 mmol/L.[1, 2, 3] Levels of more than 1 mmol/L require further action, whereas levels of more than 3 mmol/L require immediate medical review."

Coconut Oil -> Higher levels of Ketones -> Reduced Seizure severity and frequency

Higher levels of ketones are good for my son and I want it. If he did not have high ketone level, then he will probably have seizures. It is these ketones which have been found to reduce seizures even in those cases where multiple drugs failed to work.

Classic ketogenic diet comprises of 90% LFCA Long chain fatty acids ( C14 - C20 molecules) such as milk, cheese etc. This is what is mainly practiced in USA. Very high levels of ketones ( >5) can cause ketoacidosis. Long chain fatty acids also put lot of workload on liver.

Coconut oil is mainly MCFA Medium chain fatty acids ( C6 - C12 molecules) and creates ketones in the blood. It will not cause ketoacidosis. It bypasses liver on the way to brain and does not cause liver to do additional work. But they do not practice coconut (MCT) oil approach in USA.

 

[Jay1]

Hi Jay1, Your nine year old son had Status Epilepticus. I have had that kind of epilepsy 4 times in my life. My husband was told that I was going to die each time.

If you want to look up nutrition look up Epilepsy Forum Library about Robin and her daughter. She raised her daughter with nutrition. Her daughter is an excellent ice skater.

I will look it up for you.

Oh my god. You had Status Epilepticus 4 times in your life. Yes, people can die and I also thought that my son is going to die.

Now, I am fairly optimistic that my son's brain is healing and seizures will be mild if they happen at all. My son never started on drugs and used diet as first line of defense.

Usually, doctors go for diet after multiple drugs fail to work. Drugs cause lot of collateral damage.

Have you read Dr. Freeman's book? Dr. Freeman pioneered the use of Ketogenic diet at John Hopkins.

 

[HopeCoconutWorks]

Hi Jay1,

Do you use only coconut oil for your son or buy specific MCT oil or even XCT oil? I found that MCT oil is actually processed and might no be as good as coconut oil itself.... there is a link saying a doctor recommended using 4 tbsp of MCT il mixed with 3 tbsp of coconut oil to get the effect of Keto diet.... I am thinking if i shoul mixed .... but skepticle doing that. how do u feel on that?

Btw, how much mg you give ur 9 yr old for Magnesium?

Do you feel coconut oil will heal the seizure or it needs to take it forever in life? my feel is it will heal but need to be careful for unhealthy foods like fast foods, etx.