Keto formula for babies

[Scott]

Hi,
I am new to this forum, my 5 month old grandson recently started having focal seizures and was diagnosed with PMG. He is on 2 meds Keppra and Topamax at the highest doses for his age. He has 11 to 14 seizures a day on the meds and he hates getting the meds because they taste terrible. The Keto diet seems like a good thing to try. The formulas I have seen are not very healthy. Here is a sample of KetCal’s formula:
REFINED VEGETABLE OILS (PALM, SOY, HIGH OLEIC SUNFLOWER), CASEIN (MILK), LACTOSE (MILK), WHEY (MILK), CORN SYRUP SOLIDS, TRICALCIUM PHOSPHATE, POTASSIUM CITRATE, POTASSIUM CHLORIDE, CHOLINE BITARTRATE, CALCIUM PHOSPHATE DIBASIC, GLYCINE,
M. ALPINA OIL*, C. COHNII OIL**, MAGNESIUM CHLORIDE, L-CYSTINE, L-LEUCINE, SODIUM CASEINATE (MILK), L-TRYPTOPHAN, M-INOSITOL, MAGNESIUM ACETATE, L-VALINE, SODIUM ASCORBATE, L-CARNITINE, TAURINE, FERROUS SULFATE, ZINC SULFATE, MONO- AND DIGLYCERIDES, CALCIUM D-PANTOTHENATE, NIACINAMIDE, DL-ALPHA TOCOPHERYL ACETATE, COPPER SULFATE, THIAMINE HYDROCHLORIDE, PYRIDOXINE HYDROCHLORIDE, RIBOFLAVIN, VITAMIN A ACETATE, MANGANESE SULFATE, MIXED TOCOPHEROLS, ASCORBYL PALMITATE, CHROMIUM CHLORIDE, FOLIC ACID, POTASSIUM IODIDE, SODIUM MOLYBDATE, SODIUM SELENITE, CHOLECALCIFEROL, D-BIOTIN, CYANOCOBALAMIN.
Not exactly a healthy list of organic ingredient! Has anyone found a healthy formula that is Ketogenic? I realize that a nutritionist needs to be involved but it would be nice to find a formula that contains real food (preferably organic) instead of this frankenformula. Has anyone put their infant on a Keto diet? How has it worked? The seizure meds don’t seem to be working very well at all and they make him sleep all the time, not to mention the possible side effects.

 

[Porkette]

Hi Scott,

Welcome to CWE! I was on the keto diet a few yrs. ago for my seizures and what has to be done a person has to cut
back on the starch and carbs and eat foods high in fat this in turn will build up keytones in a persons body which will
help stop the seizures. One thing you must stay away from is soy, and any sugar substitutes. I had to see a dietician who
helped me with the diet and that may be the best thing for you to do since your child is so young.

When it comes to seizure meds when I was taking keppra and tompamax both of these meds increased my seizures. My
Epileptologist then did a DNA test on me to find the best seizure med for me with the least side effects and that's what
you may want to do with the child. By doing the test they will be able to see the childs body chemistry along with the
enzymes in the liver and they will see what is best for the child or it will show if the child is drug resistant like me.

I wish you and the family only the best. You can buy the ketogenic diet cookbooks and if your really interested get the
book "The Epilepsy Diet Treatment" By Dr. John Freeman. He is a neuro who explains all about the diet and gives a few
recipes in the book.

Wishing you and the family only the best and May God Bless All of You,

Sue

 

[XxBlaqkxX]

Keep in mind, I am NOT a doctor in any way.

Whatever I say is my personal, unprofessional opinion:

I'm sorry to hear about your grandson and his struggles

I would think it'd be harder to do keto for babies because of their nutritional needs. What needs to be focused on most is nutrient density.

I don't like a lot of commercial formulas out there...they are essentially junk food. Some say "organic", and that might only mean "better quality junk" at times because they need to make it palatable.

Most of the vitamins in them are synthetic, so they aren't as bioavailable.

When my oldest was born, there were difficulties breast feeding to start so she was on formula until the breast feeding thing took off and she weaned herself off of the formula around 5 months old. When she got older, we found out she was sensitive to wheat, corn, and soy it's like you feel horrible about it, but we didn't know. When she had the formula, she always had the worst acne, had this nasty yeast infection on her neck, and kept getting sick more often and we didn't know why. We went to her visits and pediatricians kind of dismiss it like, "Baby acne is normal." I personally don't believe it is unless maybe it's from laying in a puddle of drool or something. She was indeed sensitive to the ingredients.

With that being said, I agree with you. The ingredient lists for formula generally aren't good.

This is about as close as I've come to finding a decent article, information wise, about the subject but even the ideas suggested in this article sound nerve racking and expensive so I've only used it as information and have never tried to make formula at home:

https://wellnessmama.com/motherhood/baby-formula-options/

 

[Andrew]

Most of the vitamins in them are synthetic, so they aren't as bioavailable.

You maybe interested in reading my story: https://www.coping-with-epilepsy.com/threads/40-years-on-vitamin-b6.11674/ (it's now, **over 52 years on vitamin B6**).

I have been looking into ketone Bodies. Scott, You maybe interested in the following:

https://www.matthewsfriends.org/

The Daisy Garland

The Daisy Garland charity supports children in the UK with drug-resistant epilepsy. Funding ketogenic dietitians, life-saving monitors and providing vital family support.

www.thedaisygarland.org.uk

How to Get Started With the Ketogenic Diet

The Ketogenic Diet, or Keto for short, is a way of eating that mimics the effects of fasting. Learn how to get started.

charliefoundation.org

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**