Thursday, October 25, 2012

clarification on the ratio change

We've gotten the official go-ahead to reduce his ratio. 

So here's a look at his new numbers...

- Fat 87.1
- Protein 20.24
- Carb 8.79 (he's been averaging about 11 carbs a day)

Per Meal
- Fat 29.03
- Protein 6.75
- Carb 2.93
We have reduced his calories from 400 calorie meals to 300 calorie meals, but this has been slowly coming for a while now.  It's been a long time since he's finished a 400 calorie meal in one setting.  So it's more like an official change than a realistic one. 
There is still so much I need to learn about this diet.  I remember sitting in the hospital and crying while the dietitian was trying to show me how to use the ketocalculator.  It was so overwhelming to me, we were so fatigued, so desperate for it to work and yet scared to death that it wouldn' was just too much.  When she was trying to show me how to get all 5 areas balanced (fat, protein, carb, calories, and ratio) I just cried.  She told me to take it slow and just focus on ratio and calories. 
Until's like we are starting over again.  But in some ways it feels good.  I've listened to other moms talk about total carbs/protein and I've always wondered if we were doing it correctly.  Knowing that I'm balancing things correctly for his health and not just for seizure control give me confidence.  Lowering the ratio has given me a renewed sense of energy to keep trying new meals, but it can be a frustrating process to get the meals balanced correctly.  It seems as soon as I get one area next to perfect, another area has been messed up.  It reminds me a lot of trying to solve the rubix cube. to fix recipes, I go!

Wednesday, October 24, 2012

a change in the diet

Ben was extremely fatigued after school yesterday and wasn't interested in eating at all.  We managed to get about 200 or so calories in him and then he went to bed.  He woke this morning complaining of a sore throat and refused his breakfast.  I decided to call the dietitian and the neurologist to talk to them about his blood work results and to see if this is common in kids on the diet.  We are tired of seeing him so run down constantly. 

His blood work looks good, but his protein level is too low.  So we need to balance his ratio so that he has more protein than carbs.

The dietitian has recommended that we lower his ratio.  She said that it's basically becoming a quality of life issue for him.  And we agree - he's really struggling with eating.   

After reading a bit tonight, I'm learning that the longer kids are on the diet their bodies become better at producing ketones.  Often, kids are able to reduce the ratio and yet still produce good ketones.  Considering we've been on the diet for almost 1 year already (I can't even believe it), it's time for an adjustment.

Currently, Ben is on a 3.5:1 ratio.  This means that he has 3 1/2 times as much fat as protein and carbs combined.  Our plan is to lower him to 3:1.  This means that he will get either less fat or more protein/carb in every meal. 

We also will lower his calories a tiny bit until his appetite returns more.  I just made two weeks worth of pancakes the other day, but lowered the calories to 300 because he was never finishing them. It was a waste of product as well as just too much food being presented at one sitting.

It's ironic how at the beginning of the diet, we would do everything we could to make it look like he had more food to eat.  We'd use tiny bowls, toothpicks instead of forks, and just spread things out to make it look like we are doing the complete opposite.

I'm still overwhelmed with this diet.  I don't really feel like I understand it.  I need to talk to the dietitian tomorrow again because I'd like to have an exact amount of protein and carb intake for the day.  It seems that he gets about 11 carbs a day, but if we need to increase his protein then I'm not sure of the exact numbers.

Lowering the ratio means that I need to recalculate every meal.  I need to get the protein increased as well as the ratio and calories decreased.  It feels like a daunting task at the moment, but it will be so worth it!  I can't tell you how many times I've poured over the ketocalculator and wished that he was on a lower ratio.  We are headed in the right direction - weaning the ratio downward.  :)

We do have concerns though - we are making two changes at the same time.  We are in the middle of our clonazapam wean and now changing the diet.  But it really has come to a quality of life issue.  We need to get his stamina up, he needs to be able to eat.  We are hoping that this will help.

I just know that it's going to be fine.  I really have such a peace about where we are in this journey. 

A mom from the Doose support group posted this link about another boy struggling to control seizures.  It was speculated that he has Doose given the information presented.  Although it is comforting in ways to listen to others speak of their experiences that are similar to ours, it never gets easy to watch seizures happen and my heart grieves for those struggling.  Seizures are heartwrenching, horrible, and cause great desperation to do anything to make them stop.  The difference the diet is making in this little boys life is phenomenal - just like in Ben's life.  We are seeing Ben return to us and with each medication wean and each tweak to the diet, we are getting him back. 

This is another step in the right direction, I just know it!

Click on this link and scroll down to the bottom to watch the videos.  Warning, there are seizures in the video, but the information is good and it's phenomenal to see the difference.

Sunday, October 21, 2012


Ben is recovering from the flu.  His cough is still very persistent and he is EXTREMELY fatigued.  He literally slept all day and night on Friday.  Yesterday he took two very long naps and was still in bed by 6:30.  He slept until 8:30 this morning, but still took a morning nap.

His fever reached 104.9 early Friday morning.  We instantly stripped him down and did everything we could to get his fever down.  It went down and hovered at about 102 for the remainder of the day. 

I was a bit worried about excessive ketosis on Friday.  His breathing was very shallow with short breathes and his fatigue level was off the charts.  But given that his lungs were not completely clear and that fever makes you tired - it could have just been because of the flu as well. 

After talking with the dietitian about his eating patterns and the symptoms I was seeing, she said we could offer him some sugar free jello.  I was able to open a container and offer it to him.  I didn't have to weigh it.  I didn't have to use the ketocalculator to formulate a way to balance the 1 gram of protein in the jello with some fat.  It was an amazing and scary feeling at the same time.  We have weighed every single bite of food for almost a year now. 

It gave me hope of days to come!

He doesn't really like jello, but I thought for sure he'd jump at it.  He enjoyed a few bites, but quickly fell asleep again.  As I was able to get him to eat more food on Saturday, the breathing pattern improved. 

I'm just so thankful he didn't have a seizure.  Anyone is susceptible to a seizure with high fever, but Ben is at an even greater risk.  So the fact that he didn't have a seizure is wonderful news! 

I can't help but just have HOPE that we are beating this thing.  If he can be sick for a month (off and on) each time with fever, then have a very high fever, and still not see any seizure activity...I just know we are beating this. 

I can't wait to see what the EEG will tell us in December. 

For I know the plans I have for you,” says the Lord, “plans to prosper you and not to harm you, plans to give you HOPE and a future. Jeremiah 29:11

Image of A Hope and a Future necklace

Thursday, October 18, 2012

you know it's a rough day when...

you wake up in the middle of the night with fever...

you have to go to the doctor - again...

the machine won't stop beeping because your oxygen level is low...

they make you stand in strange positions, perfectly still for chest x-rays...

you have to have a giant q-tip inserted in your nose for a flu test...

the lights go out at the doctor (it gets really dark in there!)...

you have to put a strange mask on your face that makes a really loud noise and somehow breath calmly...

the doctor tells you that you need to take more medicine...

you have to get blood drawn and because you've had fever and few liquids, it takes multiple pricks and lots of 'digging around' to find the vein...

But...if your name is Ben, you take it all in stride (except for the breathing treatment - that was beyond crazy, completely irrational fear, almost funny, but not).

The amazing part of all of this is that he hasn't had a seizure.  Not one.  He is so vulnerable right now, but he's holding on!  Thank you for your continued prayers for healing for him, for continued seizure control, and that Leeon and I won't get the flu!

Wednesday, October 17, 2012

what a difference a year makes...

we had already had 2 hospital stays and were dealing with constant seizures, med changes, and that dreadful helmet...

and now we are still seizure free!  no helmet!  we are getting rid of one med successfully and I know we are going to beat this thing!

As we find ourselves involved in some of our same traditions as last year, it is amazing to see just how far we have come.  It gives me great hope for what next year will look like.  We've got to just keep on going!

Please pray for Benny - it seems like he may be coming down with something again.  He had strep throat in the middle of September and then developed bronchitis at the beginning of October.  We thought he was on he upswing, but the fatigue and loss of appetite has returned again.  It seems that he just can't get over illness as easily as he used to.  Thank you for praying. 

Monday, October 15, 2012

ketocuisine bread


I saw this recipe on the ketocuisine website and was anxious to try it.  It has three simple ingredients and I was optimistic that because the ratio was so high (5:1), I would be able to add some turkey and finally give him the turkey sandwhich that he wants so badly.

It's very simple to make, just weigh the ingredients and mix together!

I was suppossed to use a mini loaf pan, but I don't have one, so I split the mixture and put it in these mini ranikin bowls. 

I was shocked when I opened the oven to see that they were giant!!!  As soon as I placed them on my stove and turned around for the camera, they had deflated a lot.

This is what they looked like out of the pans. 
I didn't have any turkey at the exact moment of making these, so I tried the peanut butter/butter mixure.  I think he prefers the peanut butter torilla meal more than this one.  I think the original intent of this recipe is to be used as a pizza crust.  I will have to try to use it as a pizza crust instead.  This bread has a very strong mayo flavor which isn't a favorite of his or mine, so we'll see.

Wednesday, October 10, 2012

ketocuisine cinnamon cake

Ketocuisine has posted more recipes and I've been busy giving them a try. 
I was excited to see the recipe for cinnamon cake pop up, because he loves cinnamon so much. 
The ingredients are ketocuisine, coconut flour, coconut oil, European butter, truvia, egg, baking powder, pure vanilla, and cinnamon.

Mix the ingredients together and bake.

Jump over to the ketocuisine website to see the finished product.  I never got a final picture. 

It is delicious, but unfortunately, Ben is not as thrilled as I am about this meal.  It is relatively easy to make and has a really sweet flavor.  I actually wonder if it's just too sweet for him since he never eats anything that sweet.  We keep it in the rotation though because it is a complete 3.5:1 ratio meal, he can eat as little or as much as he wants.  It is completely portable as well.  No need for refrigeration or heating.  I keep trying to tell him that he's the only kid who gets to eat cake for dinner!  :)

So, if your keto kid has a sweet tooth, this is a wonderful treat! 

Saturday, October 6, 2012

my focus for this month...

Today we are celebrating Ben's last seizure - 9 whole months ago.  wow!

We don't take this for granted - not for one second.  Last night, I felt Leeon literally leap out of the bed.  This alarmed me to my core and I chased after him.  He thought he heard Ben having a seizure.  Thankfully, he wasn't.  He was asleep - he had made his way to the couch in the middle of the night, but he was perfectly asleep.  And so we made our way back to bed, hearts beating out of our chests and thanking God for peaceful sleep.

We don't take this miracle for granted because others are still trying to gain seizure control.  A little guy on the support group has lost seizure control after 1 1/2 years.  The doctors are trying everything. Pray for H and his family as they are making big decisions.

Our little friend Ethan is still trying to find freedom. 

Epilepsy is cruel.

Because even when the seizures stop, there are still repercussions.  This month we have struggled with the adjustment to school.  It's hard to see your child struggle.  I think every parent can understand that statement.

I've blogged before about how comparison is the thief of joy and it is very true.  I've found myself comparing Ben to where he was and where I want him to be with where he is right now. 

It's just hard to see him struggle.  It's hard to know what to do to help. 

I was having a particulary rough week and my friend, Angie sent me this scripture from Zechariah 4:10.  This is my focus for the month...

God is working.

We were in the pediatricians office this week because Ben developed bronchitis.  I love our doctor, he is always so encouraging.  He told me about his cousin who was on numerous, high powered meds like Ben and then eventually got off of them.  He apparently has just finished up his PhD and he said that the kids who went to school with his cousin in junior high would most likely be surprised by his current accomplishments.

His point?  Don't give up. 
The present does not determine the future. 
Especially when God isn't finished working yet.

His faithfulness is never ending. 
I love that his mercies are new every morning. 
"All I have needed His hand has provided..."
"Strength for today and bright HOPE for tomorrow!"

Great is your faithfulness, oh God, my Father...

It may have been a rough week, but it's hard to feel too defeated for long around here - Ben has been singing, "Blessed be the name of the Lord...when the darkness closes in Lord, still I will sing!" on the top of his lungs for the past two days.
Bronchitis and all.

I have a lot to learn from his faith...