Weaning off from ACTH and on the KETOGENIC DIET

Our nutritionist, Karla Mracek wasn't expecting to start Aliyah on the Ketogenic Diet so soon... she had set up an appointment 3 weeks from our day of admittance to the hospital.... She came into our room and asked us to start the Modified Atkinson Diet instead and come back in 3 weeks as schedule.. because she was busy starting the Keto Diet with 3 other patients during our stay....

Of course I was furious............ I know for a fact that when I first spoke with her 3 weeks prior to Aliyah's admittance I told her we were ready to start the Diet since ACTH wasn't looking promising... But she didn't count that as declaring anything because Aliyah was still weaning off of ACTH!!!

I did not want the Modified Atkins Diet.... I did not want me daughter to have 40 seizures a day for the next 3 weeks..... I could not believe she asked me to wait... I could not believe it!!! Yes everyone I did "B####" at her... Believe me I did not mean to!!!! I was just very frustrated!!!! I needed something done for my daughter!!! I asked her what was so hard other than setting up recipes that computer software generated!!!! What is so hard to ask the nurses to collect blood samples? What would be so hard for me to check her ketones in her urine? WHAT IS SOOOOOO HARD ABOUT IT!!!! MY DAUGHTER WAS SEIZING!!!!I ASKED IF THERE WAS ANOTHER NUTRITIONIST THAT CAN START ALIYAH ON THE DIET... she said no, she was the only one qualified/experienced...... At last she did say how she will try to fit us in during our stay there!!!!

Dr. Matthews came in our room and told us we were going to start the diet... also mentioned how Karla cried (I felt awful.. I really did) and how we should give her a break! Well who was going to give my daughter a break???? I will do anything to get things going in order to get Aliyah seizure-free even if I have to step on a couple of toes for my baby.... Aliyah can scream out "Help me"... she can't say "I want these seizures to stop"... I am her voice.....

When Karla came in we thanked her so much!!!! We are fortunate she has a BIG HEART!!!! I just hope she knew I was acting like a mommy / human... Anyone put in my shoes would have done the same .... When you are denied the possibility of your child becoming better and asked to wait a couple of weeks for that possibility..... no parent should have that patience!!!! YOUR CHILD IS IN NEED OF SERIOUS ATTENTION!!!!!

Today I still appreciate Karla and Dr. Joshie!!! :)

The first day- August 1st:

Karla gave us literature to read: The Ketogenic Diet by John M. Freeman and a pamphlet that explained briefly the diet. She also gave us a weighing balance that measures grams to take home and a food itinerary for us to follow for the next 3 days. The book said she would need to fast for 24 hours, but she disagreed with this part of the protocol because she believed it was not needed for her body needed that part for a quicker onset of ketosis, also because Aliyah did not eat for a full day because of her constipation prior to the start of the keto diet. She explained the reason for Aliyah’s admission, in order to monitor her seizures during the diet, make sure all of her medications were carbohydrate-free and sugar-free, and of course to guide us for the first couple of days in person.

“The typical ketogenic diet, called the "long-chain triglyceride diet," provides 3 to 4 grams of fat for every 1 gram of carbohydrate and protein. The dietician recommends a daily diet that contains 75 to 100 calories for every kilogram (2.2 pounds) of body weight and 1-2 grams of protein for every kilogram of body weight. If this sounds complicated, it is! That's why parents need a dietician's help.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

Her first meal was a Keto Egg Nog at 12pm

The meal consisted of :

40 grams of cream

27 grams of whole milk

22 grams of liquid egg

2 grams of Splenda

3 drops of pure vanilla extract

3pm meal was Hot Dog, Cheese, and vegetable

25 grams cooked carrots

25 grams cooked hot dog (Classical beef frank)

10 grams American Cheese

63 grams heavy cream

5pm Keto Egg Nog

”The kinds of foods that provide fat for the ketogenic diet are butter, heavy whipping cream, mayonnaise, and oils (e.g. canola or olive). Because the amount of carbohydrate and protein in the diet have to be restricted, it is very important that the meals be prepared carefully. No other sources of carbohydrates can be eaten. (Even toothpaste might have some sugar in it!). For this reason, the ketogenic diet is supervised by a dietician.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

****Karla gave us a list of Low carb and carb-free products.

We had to change and be aware of ointments, moisturizers, Lip Balms, sunscreen, toothpaste, fluoride supplements, dentist office products, shampoo, hair conditioners, pain relievers, laxatives, baby wipes, antacids, foot powders, insect repellants, deodorants, soaps and hand sanitizers, shaving cream, non-carbonated beverages without sucralose (splenda), electrolyte replacement beverages, sweeteners…. These were some that were mentioned to us to look out for.

Second day- August 2nd:

I asked the neurologist on call Dr, Bossuk to order a helmet for my daughter so that if she does fall when in daycare her head would be protected.

I also asked him for his opinion on my daughter’s case. He believed Aliyah might have a normal life since she is running, walking, climbing, and making verbal noises ma, ba, pa…. But no one knows right now, she is too young to make judgment. This was all good news for us because it gave us hope… He did make it clear it was only going to be determined by the activity of her seizures. We needed to find a way to control her spams….

8am – Keto Egg Nog

12pm- Keto Meal

5pm- Keto Meal

7pm- Keto Egg Nog

Aliyah was extremely tired, Karla explained it was because of the change in energy intake… from glucose to keto.

Shee slept for most of the day. When she was awake she had 9 head drops, sometimes she would have fallen on her face if I was not around to catch her during her head drop. Her ketone levels was low.

Third day- August 3rd: ALIYAH’S BIRTHDAY!

8am – Keto Meal

12pm- Keto Meal

2:30pm- Keto Snack

5pm- Keto Meal

7pm- Keto Snack

For her 2 yr old B-day she couldn’t have a traditional b-day cake …….. This is when I first realized our lifestyle will change.

*** Aliyah was still under high dosage of ACTH so she was ALWAYS HUNGRY!!! At the time we were on the process of weaning ACTH off her system since it didn’t help in controlling or diminishing her seizures… At first there was a little hope because we saw some decrease in her head drops but then they came back strong while taking high dosage of ACTH …. Also we were told ACTH may have been the reason why her blood pressure was so high and why she was so badly constipated.

Aliyah showed no head drops and her ketone level was moderate.

Being discharged --- August 4^th

Karla gave us a website to go to adjust, make up new recipes of meal and snacks. www.Ketocalculator.com

Along with our user name and password so we can access the website. She already set up how many calories Aliyah needed to intake daily (1100 calories) and started her off 3:1 ratio (Aliyah Keto Diet “dosage”)

“A ketogenic diet “ratio” is the ratio of fat to carbohydrate and protein grams combined. A 4:1 ratio is more strict than a 3:1 ratio, and is typically used for most children. A 3:1 ratio is typically used for infants, adolescents, and children who require higher amounts of protein or carbohydrate for some other reason.” (http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet)

Aliyah showed no head drops and her ketone level was high.

She was still tired due to the transition.

We were asked to commit to the diet for at least 3 months. We promised to be as strict as we can be.