Morning, hello, happy Christmas, and help about the ketogenic diet and modified atkins diet please.

ChrisP123

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Hi,

I just joined this website, it helps to know there are others out there and also something for support and advice.

I was wondering if anyone could help, please.
I've had epilepsy for over 2 years now. After no or little response to lots of anti-epileptic drugs, and daily simple focal seizures (with some tonic-clonics), I started on a sort of modified atkins/keto diet and found they suddenly stopped after 2 days! I had moderate and now high ketones in my urine.

My neurologist said to speak to the dietician at the hospital, however they don’t do keto or Modified Atkins diets as it’s too time consuming. I’m in Australia and they only do it at children’s hospitals. I have been unable to find a dietician that does modified Atkins or keto diets. I am trying to work it out by myself… but am finding it really daunting and I don’t really know what to do or how to calculate meals.

I can’t eat dairy (cows milk protein intolerance), so recipe books and sites are often not appropriate and it's often hard to substitute foods without changing the carbs and ratios.

1. Does anyone know a dietician in Sydney or a dietician based anywhere that can Skype/video call?

2. Does anyone know the basics about the Modified Atkins diet or keto diet and how to put it into practice? I don’t know how to calculate the ‘ratio’ (I’m aiming for almost 2:1, and 10g carbs max. a day) and also I’m finding it really hard to eat much at all without having way too many carbs before I make it halfway through the day.

3. Any resources and/or books would be very helpful (beyond e.g. the Charlie Foundation, where I can't find much info on there on how to put it into practice?; I have some recipe books but they’re often 'ketogenic' diets for weight loss instead and have too many carbs, don’t use ratios, etc. Books clear about the basics would probably be helpful, not just recipe books, so I can work out what I can eat myself.

4. I'm finding it hard to find correct nutritional values for e.g. fresh fruits and vegetables that aren't on the packet - and on the internet, they tend to vary a lot. I finally managed to join *ketodietcalculator.org* (through my dr), but it seems to vary again, I don't know how to add foods (like Australian brand cream or other food), and mostly I find it hard to use?

5. Fruits and vegetables: People talk about eating berries fine, a lot of cream… BUT when I calculate it, I can basically have 1 strawberry all day or not even a few of other berries and that’s it for the carbs. I find the creams in Australia, the lowest carb ones have 2.6 to 3.5 carbs/100g, so I have to limit that as well, and at the same time try and hit the ratio too.

I’m not used to eating high fat foods so feel nauseous almost all of the time.

Any help, especially good resources or advice that show me how to do this, and calculate meals, and any dieticians that video call or in Sydney that are used to the MAD and keto diets would be especially helpful!
Any help at all would be very gratefully appreciated! :) I'm feeling very lost right now.

Best wishes to all,
Chris
 

Porkette

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Hi Chris,

Welcome to CWE! Everyone here has been a great help to me I've had epilepsy for 47 yrs. now. I've been on the ketogenic diet in the past but I had to go off of it because I lost to much weight to fast. You should go on Amazon.com and type in ketogenic diet or The Epilepsy Diet Treatment which is a book I bought and it explains all about the ketogenic diet. A person has to eat more fat and protein and cut back on carbs and starch foods this in turn builds up ketones in the body which helps reduce or stops a persons seizures. When I was on the diet I was on a 4 to 1 ratio, meaning 4 grams of fat for every gram of protein I ate. If you like cheeses, mayo, butter, hot dogs with bacon and cheese on them but no roll then you will be happy. I don't know of any dietician in your area but take my word you can learn a lot about the diet on line and if you order the book
titled "The Epilepsy Diet Treatment" By Dr. John Freeman this book explains how the diet works along with giving a lot of good recipes.

I will tell you one thing you should stay away from is any diet sodas or anything with nutra sweet (aspartame) in them because it's been proven
that aspartame can trigger seizures for many people. I found that out the hard way by drinking diet soda.

Also go on You Tube and type in ketogenic Diet and you may get some good info. One thing I found out is taking 2 Tablespoons of apple cider vinegar with mother in it has reduced my seizures to the lowest in my life.
Another way you can build up ketones in your body is by taking coconut oil and putting in on your arms or legs once a day. This has really helped me a lot also.
I wish you the best of luck and May God Bless You!

Sue
 

ChrisP123

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Thank you Sue! That's really helpful. I'll definitely look up that book and thank you for the advice. It's good to hear someone else has been on it. I will stay away from aspartame!

Did you ever go to a dietician? Do you know their names or any other names as they may video call nowadays even if they're not in Sydney.

I noticed you mentioned "One thing I found out is taking 2 Tablespoons of apple cider vinegar with mother in it has reduced my seizures to the lowest in my life." - I presume you mean sugar-free Mother as in the caffeinated drink. Did you use the Mother just for taste or did it help as well as the apple cider vinegar? Like many people, the caffeine (i.e. coffee, tea, energy drinks) seems to worsen my seizures. Is there anything else I can use with it? Do you think it was more the vinegar that helped reduce your seizures?

What sausages did you have? Sausages often tend to have flour/carbs mixed in them.

What fruits did you eat?

Thank you again, Sue, and best wishes.
Chris
 

Porkette

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Hi Chris,
After I posted the message to you I just went on line and typed in Dieticians in Sydney Australia and it came up with a few names. I never
saw a Dietician because my health ins. wouldn't cover me so after reading the book "The Epilepsy Diet Treatment" I learned how to do the diet
on my own. The mother in the apple cider vinegar is not sweet at all Mother is a form of protein along with a good bacteria which is in the apple cider vinegar that a person uses to cook with.
You are correct you can't have to much caffeine or it can trigger seizures for some people but the 2 main things that trigger seizures are
lack of sleep and stress. Also sometimes a low pressure in the weather can bother some people because the low pressure makes the air heavy
which in turn can effect the hormones and that can trigger seizures when the hormones are changing for many people.
As far as sausage it didn't matter what type of sausage I ate as long as it was high in fat. I ate bananas, strawberries, and blueberries the
most along with cranberry juice or orange juice in the morning.
If you haven't started to keep track of your seizures get a calendar and write down what time you had the seizure along with the type of
seizure you had, by doing this your neuro may be able to see a pattern in your seizures as to what days of the month they happen or what time
of the day/night they will happen. Be sure to write down if you were sick at the time you had the seizure because being sick sometimes can trigger a seizure for some people. I wish you the best of luck and May God Bless You!

Sue
 

CQ:)

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Hi Chris
Welcome to the page.
I am also from Australia but live in Vic, I saw a dietician in 2016 but it was due to my general health not my epilepsy. My cholesterol was high and I was overweight so my dr wanted me to see the dietician to show me how to eat better to help me lose the weight and get my cholesterol levels down.

Sorry I couldn’t be off any assistance but there are a few other Aussie members on the forum and I believe some may be from Sydney area so they may be able to help.
 
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CQ:)

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This may help you though, on the forum there is a list of all the tags of popular topics. Ketogenic diet is one of them which shows all the threads / posts related to the ketegenic diet.

 
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