Growing Toddler on Ketogenic Diet

When Bug first started the Ketogenic Diet she was still eating baby food almost exclusively. I knew we were lucky to have started the diet so early because 1) Rayleigh is a good eater and we already knew which fruits and veggies she preferred and 2) We would be spending a lot less time in the kitchen.

After a few months on the diet we slowly started introducing "big people food". We started simple with finely chopped all beef, no nitrites hot dog in place of the baby food beef, chicken, etc. We would just do one meal a day with something she had to chew like the hot dog. She also started really liking the taste and texture of applesauce over baby food apples from the first time she had it on day 1 of the diet! Her first really chewable meal was actually tried when she was at Cook Children's Hospital starting the diet - she had egg salad with cream and applesauce on the side. She did so amazing with that then and it really gave us the courage to start introducing new foods.

Now she eats deli meats, hot dogs and egg in place of baby food proteins! She also eats tuna salad and loves it! Of course, it's not the same tuna salad we eat because of the diet but that's the whole thing, playing with new foods but making them for her in a way that we're not used to. A lot of these new foods you can't really make a few days ahead like we could with the baby food so we're in the kitchen making keto meals every night for the next day but we've gotten into a really good routine with it! 

She's tried so many new things over the last month or 2 and her appetite is really evolving! She likes things like tuna salad, egg salad, scrambled egg with cheese (made with cream instead of milk), cauliflower, and she loves fresh fruits like bananas, strawberries and pears! Going to try fresh plum today, I'm sure she'll love it!

Clockwise: Steamed cauliflower, butter with almond butter, cream with deli ham

Clockwise: Whipped up cream, applesauce, scrambled eggs with cheese

Bug trying cauliflower with cheese for the first time

So, yeah, we do spend more time in the kitchen making these meals but so far it has been well worth it! With baby food, you just open a jar, weigh it and put it in the fridge; with "big people food" you have to weigh all the ingredients, then mix them, then cook it, then weigh out the amount she can have per meal.

My next big feat: keto birthday cake!!!

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Purple Day is quick approaching!! Start picking out your purple outfit now! Purple Day is National Epilepsy Awareness Day, March 26th! March 26th is also Bug's birthday!!!!!!

Wear purple in honor of Bug and all others with epilepsy on March 26th to bring awareness to this disease that is burdening my baby girl and so many others!

2 Weeks Left on Sabril

Rayleigh Bug is now down to her last 2 weeks on Sabril (Vigabatrin). She will be on this medicine for a total of 2 months, give or take during the weaning process, when it's all said and done.

Last week Bug had her mandatory vision test. Eye exams are required by the FDA for any patient taking Sabril. For Bug, because she's only on the medication for 2 months, she was required to have one during the medication period and then she will have to have a second one done in August - a few months after she's done with Sabril. These eye exams are required because Sabril has several different side effects on vision.

The most common side effect on the eyes from Sabril is the loss or decrease of peripheral vision. If there is a decrease or loss to the peripheral vision due to the Sabril then it is permanent damage and will not be restored.

Other side effects include damage to the rods and the cones in the retina (that read light and darkness, black & white and color), overall decrease in vision and total loss of vision.

So, back to Bug! Last Tuesday she had an ERG (electroretinagram) on her eyes. Her pediatric neuro-opthomologist had her under anesthesia and placed small electrodes on her eyeballs. She sits in a dark room for 30 minutes to get a base reading on her rods and to calm the entire retina. Then they have a red light on to see how her eyes process that. Next is a soft white light, then a brighter white light, then a strobe light.

The test itself was really easy on Bug. She wasn't sore or anything for the electrodes and she wasn't nearly as groggy throughout the day like we thought she would be.

The ERG has to be evaluated by a trained person, computers cannot read it - yet, and it takes a while so we had a follow up appointment with her ped neuro-opthomologist (what a mouthful!) for that Friday.

During the exam Dr. Mike and his nurse used different lights and contrast tools for Bug to recognize and track and she did better than she usually does so that was enlightening! They also noted that her nystagmus has really calmed down, her eyes didn't shake once during the exam. It's very occasional now.

Dr. Mike explained that Bug's rods in her retina are responsible for seeing in the dark and seeing black and white images. Her rods are at 100%, so they're perfect and not affected by the medicine at all!

Then he said that her cones, responsible for seeing light and bright objects, are 1/3 to 1/2 depleted. He said that this could absolutely be caused by the medicine. He's not able to tell us for sure because she didn't have an ERG prior to starting Sabril so he doesn't have a previous test to compare these results to and see if it's something new or was always there. We really hope that the depletion was caused by Sabril because if it is then there is a good chance they will heal back to 100% after she's done taking Sabril.

We have an appointment with her ped neurologist this week and our main question to him is this: Bug has had increased headdrops, at least one a day, for the past week now. She is also cutting teeth bad and getting a small fever about every other day that we are treating with Advil. That being said, should we stay at this level of Sabril for the last 2 weeks or wean it off in case it damages her eyes further, or should we increase the dose for the last 2 weeks to control these head drops?