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Old 11-29-2018, 07:14 AM
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hi to all


Hi
I am a newcomer here at this forum, and for the first time at such forums. My good friends struggle with their 7 year old boy epilepsy cause as it has a sever stage. The boy is almost laying in the bed and doing nothing as he is developing only physically. They have been to many specialists but hopeless, any suggestions is welcomed.
Thank you
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Old 11-29-2018, 05:01 PM
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Hi Timet1966,
Welcome to the forum! I'm sorry to hear that your friends son has epilepsy I've had it for 46 yrs. and at one point I had very bad seizures until I found out it was the drug that was causing the seizures. If I may ask does the boy have any other physical problems?
To find the correct seizure med or to find out if the boy is drug resistant have the parent make the Dr. do a DNA test. They will draw some blood and get some salvia from the boys mouth and send it to the lab where they will be able to see his body chemistry along with the amount of enzymes in his liver. Then they will be able to find the best seizure med for him with the least side effects. Also the child should go on the ketogenic diet this diet is high in fat but low in carbs and starch foods. The diet helps build ketones in a persons body which in turn helps reduce seizures. Another thing that has helped me a lot is taking vitamin B12 and B6 both of these vitamins calm the nerves down. Another thing I have learned is to put coconut oil on my skin once a day this in turn helps build up ketones in my body and it reduces my seizures. I wish your friends and their son only the best and I think it's very kind of you to want to help them out. Wishing all of you only the best of luck and May God Bless All of You!

Sue
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Old 11-29-2018, 08:31 PM
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Howdy and welcome. I don't use this site as much as I should but there are some really good people here.
Porkette is great
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Old 12-04-2018, 05:40 AM
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This is really sad, and inhuman when you look at him and you are hopeless and couldn't help him with anything, very tragic. I am always trying to encourage my friend with useful information and ideas in order not to make her think only about her child. They are on the ketogenic diet for a couple of years already. They have hospitalized in many hospitals of the world, but without any success.

Last edited by Timet1966; 12-04-2018 at 06:19 AM.
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Old 12-07-2018, 06:58 AM
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If you have some more recipes about epilepsy: food hints, just let me know
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Old 12-07-2018, 07:39 AM
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The ketogenic diet is very strict, and needs to be done under a doctor's supervision -- the parents should talk about it with their son's neurologist if they haven't already. Unfortunately it doesn't work for every kind of epilepsy. You can read a bit more about it here: https://www.epilepsysociety.org.uk/k...t#.XAp3lBNKh-g
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Old 12-07-2018, 08:30 AM
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Hi Timet, welcome to CWE. It sounds like your friend's child has a pretty severe case. I'm very sorry to hear that.

On the bright side, it is possible that mental development can catch up once the seizures get under control. I wouldn't assume that any current deficiencies in mental development are a permanent condition. Of course, the child first needs to achieve seizure control.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 12-07-2018, 03:37 PM
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Hi Timet1966,

If you are interested you can buy ketogenic cookbooks on amazon. I have to cut out the pastas and for an adult 4 grams of fat to every gram of protein. What really helped me a lot was buying the book "The Epilepsy Diet Treatment" by Dr. John Freeman this explains how the diet works and it also gives you some simple recipes. If you want a hot dog be sure to wrap bacon and cheese around it but no roll. Here's wishing you well and May God Bless You!

Sue
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Old 12-08-2018, 06:11 AM
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I also recommend the Whole30 to start, which cleans out your system....and then a low glycemic index diet or keto from there, but keto (as said in the previous posts) is very restrictive and has to be literally tailored to the particular person. You can research online. Everything that Porkette and the moderators have suggested are on point, and of course there are hundreds of books lol. As always, check with your doctor. What we eat affects EVERYTHING: mental and physical health.

Last edited by malfeasant67; 12-08-2018 at 06:21 AM.
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Old 12-08-2018, 12:44 PM
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Diet and Supplements


I use Dietary Supplements. More to the point high dose B vitamins. I use these as my anti-seizure medication. I have a rare metabolic condition known as PNPO Deficiency.

https://www.sciencedirect.com/topics...dentistry/pnpo

This has now been confirmed via genetic testing.

Here is my story before PNPO Deficiency was genetically confirmed - posted 02-20-2011:

(((*** 40 years on vitamin b6 ***))) I have now had epilepsy for over 48 years.

Also:

Pyridoxine-dependent epilepsy (Also known as - ALDH7A1 Deficiency)

Folinic acid-responsive seizures (Folinic acid)

Biotinidase deficiency (https://rarediseases.info.nih.gov/di...ase-deficiency)

Dravet Syndrome

As already mentioned - the Ketogenic Diet: https://www.matthewsfriends.org/

and:

https://www.matthewsfriends.org/keto...iets-mad-lgit/

**DO NOT ALTER ANY MEDICATION WITHOUT YOU DOCTOR'S CONSENT**
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Old 12-10-2018, 07:33 AM
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Originally Posted by Porkette View Post:
Hi Timet1966,

If you are interested you can buy ketogenic cookbooks on amazon. I have to cut out the pastas and for an adult 4 grams of fat to every gram of protein. What really helped me a lot was buying the book "The Epilepsy Diet Treatment" by Dr. John Freeman this explains how the diet works and it also gives you some simple recipes. If you want a hot dog be sure to wrap bacon and cheese around it but no roll. Here's wishing you well and May God Bless You!

Sue
Thank you very much for this information. I will buy it definitely as I wan to please my friends.
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