Blog

Two week mark!!

11/02/2013 20:51

Well we got through two weeks. It has been going well, but still concerned about Sadie's tiredness. Its so frustrating to see her like this, but right now we don't know what is cold and what is diet. Sadie and the baby are both filled with such a bad cold that we know this has to be impacting her energy levels. We got the flavorings delivered today, and that's really going to make her cream tasty! We haven't been doing a lot of meal changes only because with her not well, we wanted to keep her meals sure things she would eat and that way we can keep her ketones up while having to give her cold medicine. So far so good with that, her levels still staying quite high. Righ now we are going to really try and get both girls healthy again so that we can really see how the diet is impacting her energy.

day 11

07/02/2013 22:02

The last few days have been ok. Sadie is a trooper and is really doing very well eating.  We are really adapting to making her meals and her Ketones are doing well, lower still in the am and higher through the day. The tough part now is getting her to adjust...She has been really tired and its really tough to see for sure. Neuro and her dietition are on it now, because this is not how we want her and not a win how she is now. She napped for an hour today and then was so tired before supper she crashed hard for another hour on the couch. It is really tough to see her like this, but we have to keep the faith, that the pros will work out the best solution. They are going to look at her meds, her ketone levels to see what we do. This is the number one side effect to this diet, so it could improve too and we are only a week today since we have been home.  Tommorow we check her weight home and that will also be reported back to her dietition to see if her calorie intake has to be higher, lower or stay where she is. We must power through and enjoy the small moments with her until she gets stong, we know she will get there.

Day 9

05/02/2013 20:09

The last few days have been fairly good for Sadie. She is really adapting well to the food, and Blair has really been creative with her fruit receipes by mashing it and then adding it to the cream and putting it in the freezer for a few minutes. She has been liking it and we just tell her its yogurt we made her!! Now we are slowly incorporating new receipes and shes a bit more receptive to it now. She has now about 3 core receipes we use for meals and the same right now for snack that we feel comfortable she will eat. The liquids still is a major challenge so we have been keeping the cup upstairs too so if she wakes up in the night we try and get it into her as well. She has been totally fine with her meds and vitamins crushed and put in the cream as well. We check her ketone levels twice a day usually in her pullup in the morning and we put cotton balls in her pullup before nap and check it then. The morning is definately lower levels of Ketones and by the afternoon she is back to max or close to it on the stick. We are still concerned about how tired she is. She has napped 3 hours the last two afternoons. We have a call into her neuro team just to see what their thoughts are on this, because we don't like her like this, she needs to be able to be an active 3 year old and right now she is not. We are blown away by the amount of followers we have on her site and this blog. My mom asked me earlier if I was blogging tonight because she couldn't wait to see it!! We really hope this helps give families a candid look at the diet and what goes into it. 

Day 7

03/02/2013 19:00

Well tommorow marks the week that we started this journey and I must say we are settling into this diet quite nicely. Sadie had a good day, and eat all her meals and all her snack. The biggest challenge right now with her is getting the fluids into her. It has been a major challenge. She is allowed water and nestle splash, which we have been giving her. She does like it, but she was never a huge drinker and now that she has to have a certain amount it has been a challenge. She is still full of cold too so I hope that once that goes she may get better with fluids. We have bringing a cup up stairs so if she wakes in the night she can get fluids and she does get a fair amount in that way, but that will still be our challenge. Ketones are still good, they did drop in color a little today, so we will keep a close eye on that. I would say the biggest adjustment to this process was the time factor, the days, and meals have to be majorly planned especially with other little ones in the house. We see improvements with Sadie's balance, but shes been sp tired with her cold, same with the baby so we are hopeful to see even more improvements once the cold passes.  We are going to continue to power on with this, and will go to every other day posts, unless there are some info that would be benefical to those starting this process.

Day 6

02/02/2013 18:55

Well I must say, today was a better day! Sadie did so great with her meals today. We started off a bit slow with breakfast and thought we were in for another challenging day, but at lunch she was interested in eating, actually said some of it was yummy! I think the trick with us was that we stopped trying a new meal every time, and stuck to the eggs receipe we got. This one is good too, because the cream goes into the eggs as well and there wasn't as much to eat in the whipped form. We stuck with some fresh fruit and put the strawberries chopped up into the cream and she liked it. We had eggs twice today, but I think some recognizable food was what helped get more comfortable with it.  Sadie has been really tired, I think getting used to this, and the seizures and adavan took a toll on her, but she seems to be sleeping more sound when she is sleeping, I think the last time she slept like that was when she was a baby! It has been challenging trying to organize ourselves, just because right now we are back to feeding Sadie and for the time being will continue this to ensure her Ketones stay strong and she is getting all her meals into her. The one good routine is Sadie's feeding schedule which has to be what it is, so we can plan naps, and baby feedings around it. One thing we have noticed is that this time around after her seizures her balance has been good. She has been very tired, but not as wobbly, and was able to walk on her own pretty much as soon as she got home from the IWK, so not sure if this is from the diet, but we shall see. We are going to get our meals planned out for her for the week tommorow, to make it easier. I must say, Sadie's strength has always amazed me, and today I am one proud Moma!

Day 5

01/02/2013 19:53

Well this blog was set out to be an honest look at the ketogenic diet, so in that spirit,  I must say today was a mentally draining day! So the wins of the day first...Preparing the meals went actually pretty smoothly. We were up and at it this am, and got Sadie's first home cooked breakfast. The receipes are easy to follow, the scale we ordered at the request of our dietition is slick and makes it very easy. The only thing that was a bit tricky was making sure if using multiple containers or transfering items that you need a really good spatula, as every gram is accounted for. We bought a tiny little frying pan and it worked really good. We tried to incoorporate some of Sadie's fave fruit, and cheese today to get her buy in. But just for relation of how much the ratio of fat works, her weighted out snack fruit was 1/2 of a strawberry! And breakfast was 5 grapes. The binder we set up has been a life saver, we had all her meds, vitamins and meals in it and that really made the day smooth. We put all the notes, and receipes in it. So I guess the hardest part is getting Sadie on board. God love her she is doing well, but its hard because its a lot of new food and textures and shes still very tired from being in the IWK. So we have been whipping the cream and that texture is a bit easier for her to take. When I say cream, her cream is Farmers 35% whipping cream!! I went on line today to a company her dietition pointed us to, that sells flavorings that are carb free. So I ordered a blueberry, strawberry and banana, so that should help. We are going to find our groove, this is going to take time, and everyday will get a little bit easier. I think we need to continue to incorporate things she will like where ever possible. We are looking into a "keto pizza" as she has been asking for pizza since we got home!! Power through...

Day 4

31/01/2013 21:32

Today was a bit overwhelming, but we are home at last! We met with Sadie's dietitian and got receipes to take home, and a lot of documentation, on things such as medications on the diet, constipation, trouble shooting tips for things such as falling out of Ketosis or being too far into Ketosis. The part that was a bit overwhelming is the planning piece behind the diet. The diet comes with supplements, such as a specific type of multi vitamin, d drops, calcuim, and she will be on PEG for her bowels as well.  I made a sheet up, see picture, that we are going to use to track her meals, meds, and liquid in take daily. It is a good check list too to make sure we haven't forgotten anything! We set up a binder we will keep with her receipes, those daily sheets and all her documentation in it so when we go for check ups we can have all her information together. I went through the reciepes before we left the hospital and made a list of some key things we picked up, but we have decided we will be planning her meals a week out. It was tricky getting Sadie to finish the meals and although the hospital was great at preparing them, its not the same as being home and making key things she likes and 'Ketogising' them up! Blair and I don't see us having to make "seperate" meals, but tweaking it for her. For example chicken breasts is a reciepe we have so we could have chicken and then weigh her portion and cook with the butter and or cream and oil. Sadie really likes an apple sauce texture especially where she has not been well, its comfort food for her so if the portions of veggie and protein are an issue, we may try to puree and see if she will eat that way, it is going to be some trial and error but the key thing is to get her to eat her full meals. The thing is that the amounts of protein and fruit are so small we want her to get all those nutrients and they are calculated in the recipes. She left hopstial at a 3:1 ratio, 3 fat to 1 carb/protein combined...small portions. It has been a long week but rewarding, it is hard juggling the hospital and also a 6 month old little sister, but we did it, and we had some great support people, thanks Mom and Ardy, you guys rock! Now we see what happens, we will be checking her pee daily for the first month for ketones and she will be followed closely with bloodwork, dietition visit, and neuro visit after the first month. Tommorow we are going to make our first Keto breakfast, eggs and fruit, with oil, cream and butter...

Day 3

30/01/2013 16:29

Sadie had a pretty good day, she is doing pretty good with the meals, she hasn't finished a meal yet, but has been eating all the fatty type foods we need her to in order to get her Ketones higher. We checked her levels this afternoon and they are almost to the highest level on the marker, see picture. I can't believe how quick that happened. We had some training today, as well and it is going to be a lot to manage, but think very doable.Everything, from shampoo, to soap, tooth paste to cold medications, anything touching her skin has to be accounted for. She is in pretty good spirits and her seizure activity as slowed down, but too soon to tell what that is from, as she had the adavan yesterday too. It is a long process, but interesting to see how food can inpact your body. We started Sadie on Nestle Splash as this is a drink approved, and she likes it, this will be our alternative to juice for her, water with some flavor and no carbs in it. The meals look very small, but for Sadie almost a good thing, as she is not the greatest eater to begin with. Power through to Ketosis!!

Day 2

29/01/2013 21:41

It felt at the start of today like one step forward two back. Sadie had had 3 seizures by 1pm and we needed to give her Adavan. Her ketone levels were checked in the am and there were none present yet. Sadie has been a major trooper with the diet. It is a small amount of food, but the cream, butter and oil is what most of her calories are coming from. It has been a bit of a challenge getting her to eat, so Blair used a medicine droper and gave her the cream/oil mixture that way! It totally did the trick were Sadie is used to getting her meds that way anyway. I really have found good success by mixing the fatty foods into the apple sauce or cream. A little container of margerine was part of her supper so I melted and mixed in with her apple sauce and she was none the wiser! It is really important that people around her are postive and not grossed out while she is eating because we don't want that to negatively impact how Sadie is feeling about what she is eating. The dietition spent some time with Blair and I and my mom this am doing some training. There is a fair bit of choice but everything is so presise with the calculation. She is very flexiable with getting us receipes for items that Sadie will like, and we will be in constant contact with her. So the end of the day got better, Sadie got a bit of sleep and we rechecked Ketones and they are starting to be present!! So the process has begun, we are on our way to Ketosis...

Day One

28/01/2013 13:48

Well Day one has been interesting. Sadie had a few seizures through the night and one early in the morning so the day started with her groogy and tired. The only good thing about this is that she wasn't wanting breakfast so the transition to her first meal at lunch went well. We got checked in and she had blood taken almost immediate. We put cotton in her pull up so that her urine can be checked for her Ketone levels. Her urine will be checked at least twice a day to check Ketone levels. Her fist meal arrives, see pictures, and it was interesting! A small piece of chicken, some apple sauce, some mayo and cream to drink with oil in it with a bit of vanilla! Sadie did pretty well with it, she had another seizure right after eating or else I could have gotten more into her. The trick was mixing the mayo and chicken in with the apple sauce and she was none the wiser. Her food is proportioned right now one to one which means one of fat to one of carb and protein combined, the ratio will go to 3 fat to one carb/protein by Wednesday and further or less depending if she is in Ketosis or not. Blair and I are feeling positive about the process and really are optimisitc on the outcome.  Sadie is doing well, will be glad when this seizure spell is over so we can see how she will truly be eating on the diet. Her receipes will be given to us from the dietitian and we just need to follow them, so no calculations will need to be done on our end which makes it easier.

<< 1 | 2 | 3 >>