A day in the life of Rayleigh Bug as of late is very busy, non-stop and little downtime. But she seems to be enjoying herself! We have physical therapy or some other type of morning activity more days than not so we'll do a day that includes Jim Thorpe physical therapy.
Wake up between 8a-8:30a. Drink some water & have a diaper change, put 3 cotton balls in the new diaper to "catch" some urine for the Ketones test.
Take morning dose of medicine down with some flavored water.
Have a needle-prick for blood-sugar levels test.
Eat some breakfast, usually egg salad with applesauce and whipped up heavy whipping cream.
Take vitamins with breakfast. Half of a chewable multi-vitamin and a whole 600mg calcium vitamin.
Generally she has wet her diaper by now so I squeeze a cotton ball of urine onto a ketones test strip to see if the purple square turns dark enough for her ketones to be in the high level.
I make a cup of coffee and sip on that off and on while she sits in her Bumbo chair on the bed with me while I get dressed and do makeup then we get her dressed and have to be to Jim Thorpe for physical therapy by 10:30.
She does "playtime" with Miss Rachel for 45 minutes - 1 hour and then we drop off banner orders at the post office and head home.
Now we get our first break time of the day. After therapy she takes a 30 minute early nap around 11:30ish because it wears her out so I go and make a much-needed full cup of coffee and check the work phone and emails and maybe get some work done on banners for my Etsy shop.
By the time she wakes up it is close to lunch time so if it isn't too hot yet, we go out back and walk around the yard or take a blanket and lay down with toys and then we get her in her highchair for some Ketogenic Diet lunch! Today it was baby food chicken, baby food sweet potatoes, whipped up heavy whipping cream, butter and applesauce! She ate every bite just as always!
Next, after her food has settled we go into the office and she gets in her jumper while I work on the laptop. When she starts to get bored we head back to the living room for more playing.
If she napped earlier than she probably won't take her big nap until 2:30 so by then Michael is home and has had time to play with her, too! I give her her mid-day dose of medicines with flavored water around 2p and then snuggle her up for her afternoon nap.
This is normally a big nap and daddy joins her to rest from his day at work, too, so Mommy gets some good time in to have lunch and get more work done!
When she finally wakes up she gets a sugar-free Jello snack with a little whipped up cream on top and applesauce on the side!
Then we do more sitting activities and baby-entertaining until it's time to make dinner. One of us (Michael or I) will make dinner while the other feeds Bug her dinner!
After dinner we get some family relaxing time in by taking a small walk around the neighborhood and then some TV time and playtime.
Around 8p Bug gets her bath and then at 8:30 it is her last dose of medicine for the day. Before 9:30p Bug has a homemade Ketogenic Diet approved yogurt snack! Then BED!!! Whew, exhausting just writing this!!!
But that's not the end of it for Mommy! Once she's asleep I get my shower and then I make her meals and snacks for the next 2 days (Michael has been such a great help with this!) and then I clean up the house a bit, work on my banners a bit and hope to be in bed by midnight!
Thursday morning, our 4th day at Cook Children's Hospital, went really well. Rayleigh Bug slept all night and went seizure-free! She woke up still hooked up to the IV and on a really slow drip. We poured Rayleigh a bottle of flavored water and she actually sucked it down! We were so thrilled that she was taking the bottle again! She still wasn't drinking a whole lot but the fact that she sucked on it at all was a good sign. Then she had her morning medicine and some breakfast: chicken, pears, apple juice, butter, whipped up cream. She ate every bite just like a big girl!
After breakfast Jessica Holy, Bug's dietitian, stopped in to see how Bug was doing but there were 2 nurses and a girl from labs to draw blood in the room so she said she'd come back by after lunch and talk and steal us to make some meals for the next day.
Not sure if I've mentioned this yet but on the Ketogenic Diet a child's blood sugar level should be around the 60s-70s. If it drops below 45 she gets 1 ounce of apple juice. Her levels have so far been between 50-80 but she did have one time at 6am when they checked and she was right at 45 so they gave her 20ml apple juice and a couple of hours later it was up to 69 so all was well.
Dr. Malik made his rounds before lunchtime and answered any questions we had and said that he was good with us going ahead and getting discharged that day instead of waiting the full 5 days because she was taking to the diet (minus the thrush/almost dehydration) and she was drinking again and we knew what we were doing. He prescribed her 2 weeks worth of nystatin for her thrush but said that since we caught it so early, once we can no longer see the white give it to her for 3 more days and she'll be clear.
Excited with his news we still knew that Jessica had to clear us to discharge that day. While we were waiting to see her again, a diabetic educator came in to show us how to use our own glucometer and it was alot easier to learn that way than when we read our instructions! When we get home we are to check her blood sugar levels once a day for 30 days and her urine ketone levels once a day every day she's on the diet.
After lunch and medicine and Bug's nap Jessica came back around. She told us that as long as Bug is back to sucking on a bottle nipple or sippy cup and we feel comfortable with the diet than she is absolutely fine with us going home that day! So she answered a few quick questions for us like how to change foods in the Ketocalculator (so I can swap some for organic choices) and what kind of butter and whipping cream is best to use. Then I went across the hall with her to make some meals for Friday so that we would have enough until we could get to the grocery store. It was so much easier I was whipping up meals in record time!
Before we knew it it was 5:30p and we were getting prescription forms and packing our cooler with Bug's meals and loading bags on a cart and signing discharge papers and then we were on the road back home :)
It is now Friday evening and she has not had a seizure since Tuesday night, 1:30am. Knocking on wood now but it could be the beginning of something amazing!
Rayleigh had a seizure Tuesday night around 1:30a. It was only 40 seconds and not as intense as usual. Then she had a really rough 3rd day. It started off with Rayleigh still not able to drink out of a bottle or a sippy cup. Her morning medicine was awful – she is on Trileptal and Clobazam both in pill form. We crush them and put them in a syringe and suck up some water in it and squirt it into her mouth. She was fighting us like crazy taking her medicine. I'd squirt some in her mouth and she'd just have it sit in the back of her throat for what seemed like an hour! It took a while but we got her to drink every ml of her medicine in the morning. We normally give her a chaser of juice or milk (milk is no longer allowed) with her medicine but as soon as we put the bottle in her mouth after medicine she seemed to almost gag. Afraid she would spit up all of her medicine we gave up.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.
Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.
Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.
We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.
Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.
That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.
Rayleigh's second day on the Ketogenic Diet started out really well. She had egg salad with her breakfast which was a first for her and she seemed to enjoy it. She lounged around in bed for a bit after eating and then she fell asleep on and off for a good 2 hours.
When she woke up she had a jello and cream snack and then hung out until afternoon medicine. She was pretty drowsy all day but we were told that that is very normal when your body is transitioning from burning carbs & sugars for energy to burning fats.
The VEEG techs came in and took off the EEG leads and told us that Dr. Malik received the information he needed and that they got a good read on her even though she didn't have a seizure while hooked up.
For lunch she had level 2 chicken with cream, butter and applesauce. She ate it pretty well and then we went over to the playroom to get her out of the hospital room and walking around the halls and playing with toys. She really enjoyed getting out. Our dietitian found Rayleigh and I in the playroom and asked if we were ready to go to the meal room and make and plan some meals for Rayleigh to eat for the next day. We took Rayleigh back to our room and a volunteer and nurse stayed with her while Michael and I went with the dietitian.
We learned how to use the gram scale, how to weigh out her foods, how to read the recipes and how to use the Ketocalculator. The Ketocalculator is where her recipes are stored and the dietitian enters her specific weight and her ratio of the diet (3:1) and the recipes tell us how much each portion of the meal should weigh out. It's pretty neat and makes it easier than we expected. We will be spending more time in the kitchen preparing her meals than ever before but if there is some seizure control with this diet then it's all worth it!
When we got done the nurse and volunteer told us that Rayleigh was pretty sleepy but happy while we were gone. The nurse brought in some KetoCal formula mixed with just a little apple juice and some water. She did NOT like it. We gave her some time and tried again but same result. We were getting worried that she would get dehydrated. We began trying to find ways to keep her drinking - she wouldn't drink water or the KetoCal snack all day.
She ate every bite of her dinner but she was eating a little bit slower than usual. Normally, you give the kid a bite and like a baby bird she opens her mouth and whines for more. But not during dinner last night. It wasn't that she didn't like what she was eating, it was more like she was exhausted. So we got through dinner, tried a little water with no luck and then we watched a movie in bed. Michael noted how quiet she was during dinner, that's usually her cranky period but she didn't seem to have it in her on diet day #2. After the movie, though, she was doing some good propping and sitting before medicine.
Medicine went pretty well but about an hour and a half later she was still wide awake so we thought it would be a good time to try the KetoCal formula snack a second time. Almost immediately after getting the nipple of the bottle in her mouth she threw up. It was so horrible for her. She has never thrown up like this. Yeah, she's spit up milk here and there if she gets too active after a full cup of milk but never like that night. We paged the nurse and after getting things cleaned up we began our questions: "Is she not tolerating the diet?", "Is it something new she ate like eggs?", "Will she be ok?", "Is it because she's not getting enough liquids?", "Is it the apple juice mixed with formula?".
Pretty much all questions were half answered and we were told that we'll have to wait until the morning to talk to the nutritionist but because it was only the one time she was probably fine and it was probably a reaction to the transaction of the diet.
Her blood sugar levels were getting lower when she was checked at 11:45p but nothing to be concerned about so we all went to bed and got a decent night's sleep.
Arriving to the hospital we immediately feel like, "Alright. The time is finally here. We've been thinking and talking about this day for so long. Today, we are starting the Ketogenic Diet."
Bug has an IV in right now. A standard protocal at the hospital on the EMU floor in case they need to administer rescue drugs for a seizure. She is also having a 24-hour Video EEG that she will get taken off during her second day.
Because the diet excludes a lot of sugary foods children on the diet are at risk for low blood sugar. If Bug's level drops below 45 we are to give her an ounce of orange juice or apple juice to boost it back up. Otherwise, she is not permitted to have orange or apple juice while on the diet. Going to bed the first night she was at 54. Normal blood sugar levels for a child on the diet is usually in the 60s or 70s. So her's was getting a little low but they said that that is pretty normal for nighttime if they haven't eaten in a couple of hours.
The nurses and Michael and I are also checking her urine for Ketone levels, gluclose levels and sugar gravity levels. The first few diapers her Ketones were negative but at bedtime she hit trace amounts of Ketones! Yay!
Rayleigh Bug will be on the 3:1 ratio. This means 3 times the amount of fat than carbs and protein.
Her carbs are coming from her fruits and veggies. So like, apples, applesauce, strawberry, carrots, etc. Her fat and proteins are coming from eggs, beef and chicken.
We are working closely with the nutritionalist here, Jessica Holy. She is AMAZING. Very easy to talk to and to ask questions and very informative. She came in twice on the first day. The first time was to give us the basic rundown of how the diet will be started and to meal plan. We planned out what time of day she would eat meals and snacks and what she would have.
Because Bug is so young still she was able to start onto the diet with the Ketocal formula. It's a special formula for the Ketogenic Diet that comes in the ratio (3:1 or 4:1) you need so there is no measuring out. Her Ketocal liquid formula is being mixed with water to introduce it to her body. Her first 2 bottles of Ketocal were 2/3 water and 1/3 formula and she had those at 3p and 5:30p. Then at 7:30p she had a bottle that was 2/3 formula and 1/3 Ketocal. She tolerated this very well. Then after medicine Bug had a snack. Her first solid food on the diet. Her bedtime snack was.... sugar-free jello and whipped cream! Oh boy, was she in Heaven!
So far, so well!
A lot of people, even people IN the epilepsy world, don't know a whole lot about the Ketogenic Diet. In a phrase, it is a diet used to control hard-to-treat seizures.
The diet is a high-fat, low-carb, moderate protein diet.
Please note that I am not a nutritionist nor have I spoken with one in depth about the diet. All of this information is from what I have been told by doctors and what I have researched online and in books. So bear with me as I don't use fancy lingo or doctor terms. After we see the nutritionist I will definitely make an update post!
Some really excellent resources about the Ketogenic Diet are below if you would like to do a little research on your own :)
FAQ in simple terms: http://www.charliefoundation.org/faq/ketogenic-diet.html
Diane Sawyer did a story on ABC about the Ketogenic Diet and follows 2 children's stories: http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995
From what I understand, the Keto Diet was created because an accident was found. A wonderful accident. They were performing studies on people with epilepsy, one of those studies was fasting. They found that once the body reaches a point where it is feeding off of its stored fat rather than burning carbs, sugars, etc. for energy the seizure activity was decreased and some were seizure free. The process of your body using stored fat is called Ketosis - hint Ketogenic Diet.
So this Keto Diet mocks that process by giving your body more fats to burn than other ingredients.
Rayleigh will obviously have to take a multi-vitamin each day to keep with the deficiencies that will be in the diet. A typical meal could be 1/4 a hot dog, heavy whipping cream blended with flavoring like vanilla extract or cinnamon, 3-4 green beans and a slice of apple.
In Rayleigh's case most foods will go through our food processor to be pureed or close to since she is not yet finger feeding.
In the Diane Sawyer interview about Keto Diet (link above) she talks with 2 experts about the diet, both doctors. They state that several of their patients starting the Keto Diet have already tried several anti-convulsant medications. One of the doctors also says that they've had several children who have hundreds of seizures a day become seizure-free completely and most of the time that happens within just a few weeks of being on the diet.
The Charlie Foundation's FAQ breaks down the numbers:
- 1/3 of children on the diet get to 90% or more seizure control
- 50% of those children become completely seizure-free
- 1/3 of the children on the diet get to 50% seizure control
- 1/3 of children on diet quit the diet because it is either ineffective or not done right
Rayleigh will continue to take her Trileptal and Clobazam while on the diet. If she gains seizure control on the diet we may take her off the medicines down the road.
If the diet is successful she will stay on it for 2-3 years and then we will wean her back into "normal" food.
Most of time, whatever seizure control you gain while on the diet 2-3 years you keep. So, let's say Rayleigh would go down to 1 seizure a week rather than 1-2 a day; when she gets off the diet she would most likely stay at 1 seizure a week and not go back to 1-2 a day.
If the diet is not successful she will get off of it within 2-4 months of starting. We should see starting results of it after she has been on the diet for a full 10 days. She weans onto the diet while under medical supervision. We will be at Cook Children's Hospital in Ft. Worth, TX to start her on the diet soon.
We really need this to work for our baby girl!
