3:1

After a week of trying the 2.75:1 ratio we decided to bump Lainey up to 3:1. It took a couple of days but we finally got high ketones. She hasn't wanted to pee on the potty and has had some loose bowel movements in her diapers, which has made it difficult to check ketones twice daily. We had a date night with her on Saturday night. While the boys played at a gym, we went out to eat with Lainey to a really nice restaurant and sat outside. It was a really nice evening and since I had already fed her dinner before we left all I had to do was pack a snack. When our food arrived at the table and she got antsy, I fed her some applesauce and then gave her cream through a syringe. It took all of three minutes. Luckily, there was a lady sitting at the table beside us and she talked and played with Lainey while we finished our meals. After that we went to Whole Foods and picked up the ingredients I needed to make some KetoCal snacks. Today, I made blueberry waffles, no bake fudge, blueberry muffins and creme brulee. She ate the waffle at lunch. I was so nervous that she would throw her food or not eat it all, because it was a pretty large amount compared to some of her other meals. But she ate it all, hooray! Preparing the meals is really simple and we haven't found it difficult to pack her meals up and go places. Sometimes I wonder if I am doing something wrong because it just seems too simple. We also went by Williams Sonoma and picked up some glass mixing bowls and more mini spatulas. I was tired of doing dishes so much!

Batch Cooking and Melt Downs

Results of mac and cheese batch cooking

I attempted to batch cook the Miracle Mac and Cheese, the recipe is available on ketocalculator.com. It was tedious because you have to measure everything out separatly. It is not a dish you can just make a large amount of and split up. You have to do everything separate. I only had plastic bags and then one empty plastic baby food container. The plastic bags are not going to work because you can't scrape all of the butter out into a dish. My friend had collected a ton of the baby food containers so I am going to use those from now on. I also found a perfect spatula at Target. It is by Nordic Ware and for kids helping to bake in the kitchen and comes in a package of three, see below. But it fits well in Lainey's mouth and gets every last drop from a bowl.



WHAT'S WRONG WITH THIS PICTURE?

One of the boys left their cookie on the table within reach of Lainey. Big NO NO. This is going to be quite and adjustment for them as well.

Melt Down Story, Mine not Lainey's

Yesterday I had a source of nervous breakdown. Lainey had a seizure that morning, my house was a wreck, I didn't have any of her information organized. All of the keto recipes and her medical information was piled on my kitchen counter. I felt out of control and I needed to pull it together.  I needed my mom. Yep, sometimes I grown woman just needs her mom. But my mom lives an hour away and it just wasn't feasible to even ask. So luckily, my gracious father in law kept the kiddos for me for a couple of hours. I went and picked some supplies from the store, like the spatula above, mopped all the floors in the house. Put all of Lainey's keto information into a pink binder and recipes in plastic sleeves in the binder. I got myself organized and it felt great. For family members of someone either starting or on the diet here is a word of advice: offer to watch the kids so a mom can take some time to herself or do some extra cooking or cleaning, it would mean so much to them to be able to breathe in solitude!

Lainey goes to the nursery at Bible study

I need normalcy, Lainey needs normalcy, I strive to give my boys to normalcy. I love Bible study, I love to spend time talking with my girlfriends. Because of this I decided to take Lainey to the nursery at church during Bible study. Luckily, my church has great staff and they are very familiar with Lainey's condition. I was nervous, I am not going to lie. They give out cheerios during snack time. Kids walk around with their sippy cups, they are supposed to be filled with water. I told the ladies what was going on, "She is on a special diet to control her seizures. She cannot have anything to eat and only drink from her cup. It is really important she doesn't pick up any food and put it in her mouth." We then proceeded to use their Allergy Alert stickers, with NO FOOD written on them, and stuck them all over her front and back and covered her bag with the stickers. It did look a little extreme, but I know from working in the nursery that it can get hectic and I didn't want an accident to happen. It all went fine. I couldn't find the actual stickers online, but ketogoods.com has some specific for keto kids.

Praise Report!

This is cute!

Things have been going really well. The meals are easy to do with a little planning. For instance, yesterday I took the kids to the pool and when dinnertime rolled around dad brought Lainey's food in a separated plastic container, a cup with her cream and her meds. She did seem hungry still, probably from all the swimming. I just kept offering her cup of water.

We were having trouble getting her KetoCal formula. I know that it is not absolutely necessary to have this, but Lainey really likes it and it has what she needs for her ratio. I even have a snack created in ketocalculator consisting of ketocal formula and some fruit. Our insurance wasn't going to pay for it because she doesn't have a metabolic condition or G tube. The wonderful discharge nurses worked really hard to research other avenues to acquire the formula. Low and behold because Lainey is on Medicaid (a whole other story) we automatically qualify for WIC and they send the formula out for FREE! Otherwise, we would have to pay the $250 each month. I am excited to get the powder and make some of the pancake and muffin recipes from ketocal.com.

She is still having seizures, but we haven't managed to keep her at high ketones yet. Yesterday we increased her ratio to 2.75:1 and it has already raised them. I pray that once we get her ketones to stay at a high level over a long period of time we won't have any seizures. We are already weaning off Topomax, which I am so happy about. It has some bad side effects and she has to take a supplement with it. So that will be two less meds to administer two times a day.

I have also found a few other Web sites that are sooooo neat:

http://www.ketogoods.com/KETO_GOODS/HOME.html ---- super neat shirts and stickers to make your people aware of their diet.

http://ketocook.com/ ---- great ideas, resources and recipes

Our local support group is Keto Kids of Kentuckiana group on Facebook.com

From ketogoods.com

Moderate Ketosis

Lainey had moderate ketosis levels yesterday and today. I am going to call the RD tomorrow and I assume they will increase her ratio. Which they said would probably happen so I am not freaking out too bad. I am getting used to measuring out foods and I tried a new recipe this morning. I realized that based on what a meal consists of, she may or may not receive a lot of food. I made a flax and egg dish that was very small, but she has an avocado and veggie snack that is a little bigger than that meal. I enjoy making new dishes and I am having to reign myself in because she only gets to eat a small portion of what I fix and the rest goes back in the fridge. Right now I have four possible meals in tupperware from which to choose from. Since I don't want the food to go bad, I have to wait to try any new dishes.

My husband had a birthday gathering tonight and Lainey was eyeing the cake and ice cream. And I had to be on the lookout for anyone leaving their plate within her reach. I can see where it would be good to really stress the importance to the people that surround her how she absolutely can't taste or eat what they have, even by accident.

The ketocalculator is an amazing resource for planning meals. I don't know what I am going to do if my internet goes down!!! I am going to go shopping this week for little plastic storage containers, spatulas and a binder to stick recipes. Taking it day by day!

Trying to get myself organized

First dinner at home completely by myself!!!

We got home last night and I already had an idea of what I was going to feed Lainey. My plan is to use the recipes I have until I get comfortable and then I will explore new options. This morning I was so glad when they nurse from respite care showed up, she took Lainey and played with her so I could try and get myself organized. I had some recipes I was going to try and prepare ahead of time and freeze, and then I realized I didn't have single serving dishes to freeze them in. So I will have to batch cook another day, and plus I think it is a little premature to start that right now. Lainey had two seizures this afternoon, which isn't really bad. I have entered her next meals into keto calculator. I have to remember what meds are given when. My head feels so full of information, I had terminology going through my brain all night, I just wanted to shut it off. My day was a little complicated with having to run the boys to go swimming and then practice and then back to the pool. But I really feel like this was a great option and I hope to see positive results soon!

Keto Journey Day Four

We get to go home today. Lainey is in ketosis her blood is all acidic and everything. There is a great program called keto calculator that does most of the hard thinking in developing meals. I am so thankful that the Charlie Foundation created it for us! I have been plugging meals from the two books I ordered from Amazon so I will have a variety of meals. A kid can only eat so much scrambled eggs and tuna. We feel very comfortable measuring everything out, checking her glucose and ketones. We are heading to Whole Foods and Krogers after we leave to pick up all her food supplies. I am nervous and excited. The nurse told us to expect her ketones to dip into the mild range when we get home and that we may have to play with her ratio until we get it exactly right. I look forward to starting this journey in the real world.

Keto Journey Day Three

Last night was rough for Andy and Lainey. She had a seizure at 6:30 pm and then had two more around midnight. Andy said that she was up and down all night long. It didn't help that they had a monitor beeping and then drew blood at 4:00 am. If the nurses really wanted to be helpful they wouldn't bother you all night long. Especially for a seizure kid that needs a full nights sleep. When I got here this morning she had another seizure right before breakfast. It was a pretty strong one and since the nurse hadn't brought her meds yet we gave her one of our clonopan. Apparently, they don't like you to take your own medication, we got slapped on the wrist. She ate all her keto breakfast and then had a bowel movement all by herself. I was worried we were going to have to do an enema since she hadn't had a movement in five days. Today the dietician is going to increase her ratio a little higher and then we can plan some meals for when we go home. Looks like we will be making a Whole Foods stop on our way. We did find a bread that was only one card, it is $7.99 a loaf and is shipped from California. Those West Coast people got the monopoly on healthy living. Why is that? Day three went very smoothly she moved into high ketones by the end of the day. I am still trying to figure out how to incorporate her meds into her meals, since they are so small. I don't want every bite she takes to taste awful and create in her an aversion to food. Luckily, beginning next week she will start weening off the Topomax!! Woo hoo, I did not like that medication. And I wasn't even taking it!

Keto Journey Day Two

Dinner on Day One,  a little less than one whole egg and a packet of mayo. Notice her meds have to be crushed and put on her food, any syrups are not allowed.

Dessert Day One, a couple strawberries

Lainey waiting for Breakfast on Day Two, she was hungry!

Today we are learning how to check her ketone levels, which involves her peeing on a test strip. We also have to check blood glucose levels daily. You can see that she did get her IV in the picture above. Thank goodness for good IV technicians. Last night, I got to go home and see the boys and daddy had a sleepover party with Lainey at the hospital. When I got home the Granny and brothers had prepared a relaxing spa gift for me, it was so nice to have a bath scrub, conditioner and chocolate face mask. I read some of my new book Keto Kid and it was so enlightening, I may recommend it for our friends and family, so they can be educated on the emotional and physical changes Lainey will be going through and how to support her best during this therapy. Luckily she is so young that she won't notice how others get to eat things she doesn't and she isn't in school yet.

Breakfast Day Two Ratio 2:1
Scrambled eggs with cheese and butter
A couple grapes
KetoCal drink

Lunch Day Two Ratio 2:1
Sliced Turkey with mayo, cooked carrots with butter
KetoCal drink

It is so good that Lainey likes the KetoCal drink because it is a good source of high unsaturated fats. She won't have to eat so much butter and heavy whipping cream. Her ketones are slowly increasing as she reaches full ketosis. I keep having to resist the temptation to give her a cracker because I think she is hungry. And I feel guilty about eating in front of her. I feel as if when we get home, I may not allow snacking around her. I don't know how it will play out.

She hasn't had a wet diaper since we have been in the hospital even over night. We keep sitting her on the potty because that is where we check her ketone levels. This event might naturally turn into her being potty trained, wouldn't that be great?

The diabetes nurse educator came and brought our glucose monitor and showed me how to use it and we did a check on the machine we will use at home. It seems really easy and I plan on doing it myself the rest of our hospital stay to make sure that no complications arise with the unit.

Keto Journey Day One

Today is Monday, June 4, 2012 and we were admitted to Kosairs Children Hospital in Louisville, Kentucky this morning. We were at this hospital for a month in December 2010 when our daughter Lainey, who had just turned one years old, first got sick with her initial illness of encephalitis which caused her stroke and subsequently is why she has seizures now.  We were also her a year later (Jan. 2012) for a week when she was diagnosed with infantile spasms (IS) and we began ACTH treatment. Last week we stayed one night for her 23 hour EEG. So were are familiar with the layout of the hospital and know a lot of the nurses and staff, which makes it nice when you want extra stuff like pillows and whatnot.  But nevertheless it stinks to be stuck in a sterile room for a couple of days with no windows to open when the weather is actually nice outside. We are here to start the ketogenic diet because she is not responding to the seizure meds. She is on Keppra, Topomax, and Clonopan and still has breakthrough seizures a couple of times a day. Mainly when she awakes first thing in the morning or from a nap, and also random times throughout the day. Our neurology team recommended the diet, which I had already researched when she had IS. The Web site www.charliefoundation.org is an awesome resource for patient information. I found two books on Amazon as well and ordered them, The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet by Dawn Marie Martenz, Laura Cramp and Keto Kid: Helping Your Child Succeed on the Ketogenic Diet by Deborah Snyder. So I am looking forward to inhaling all that information when they arrive.