So, now what?

The most common question is....what happens next?
   I have come home with a million pieces of paper.  CHOP donators were kind enough to give me a binder to put all of these papers in.  Yet they remain exactly where I keep them, on the kitchen counter.  I use two main documents when calculating Cavan's meal plan.  The first is the Keto Manual I got way back when.  Seriously, if I ever lose it, I'll be screwed.  The second is the list of exchanges that the dietitians created for Cavan.  They calculated everything down to the midday snacks and the before bedtime snacks for me.
  I am documenting everything.  And I mean EVERYTHING!  I have to document his blood ketones, his blood glucose, his urine ketones, his urine PH, his blood in is urine, his bowel movements, his eating percentage for every meal, his seizure activity, his hunger level, and there is probably more but my brain hurts just thinking about it.  Why am I doing this? It helps his Keto team decide where to go next.
 At the two week meeting that we will have on October 7, the Keto team will look at what and how he is eating to decide if we are going to change his ratio.  Right now Cavan is at a 2.5:1 diet.  This means he eats two and a half fats to every carb/protein.  The Keto team would like to see Cavan get to 4:1. His body couldn't handle that in the beginning so we have started here.  They will more than likely gradually increase as time goes on.
  Cavan is still on his meds.  The Keto team wants to give him at least three months of being on the diet before they even think about weaning him off.  They want to make sure his numbers are stable before messing with his brain.  Happy to say that Cavan has been seizure free since coming home! It's so hard to say if that's the diet though because he was seizure free going into the hospital.  I guess we will see what happens when they start weaning the meds.
  So how are we adjusting you are probably wondering...
 I am freaking exhausted.  The kids go to bed around 7/7:30 and from 8-10 PM I am in the kitchen.  I have to meal plan (which is so much math!!!) and then I try and prep for the next day.  If I have enough time, I'll cook in advance.  So tonight I made three days worth of pancakes for breakfast.  You have to understand.  There's shit in these recipes that I have never even heard of! I am so not a baker.  So when the recipe calls for whipping eggs into stiff peaks, I needed to google what the hell stiff  peaks were first.  So things have taken a bit of time.  But I'm trying.  And I'm trying to find things that Cavan would like.  I also try to find things that are similar to what we are eating so it doesn't make him sad.
  How is he doing with eating?
He's a rockstar.  Seriously.  What kid takes three different meds, eats a breakfast of fat and very little carb and then bam! Takes about 16 grams of oil.  It is so freaking gross.  He has labeled it in his mind.  He doesn't mind his bicitra med.  That's "the good one." The oil is okay because he likes to watch the bubble float to the top of the syringe.  The cream he just can't stomach.  Our dietitian said that was okay because the oil is a better fat anyway.  It's healthier.
  How is Cavan mentally?
We have great moments and we have really really bad moments.  Like when he goes into my pantry and cries for like a half an hour because he wants goldfish.  And he can have like two (no joke) and only at snack time.  Not when he wants.  Or when he goes into the fridge and gets a yo baby squeezy and I have to tell him that it's not good for his brain.  He is getting smarter and saying things like, mommy can you check your list for me? Or maybe can I have that at snack time? Little things and statements like that give me hope.  It's not easy and it'll be a long road but if we can remain seizure free when we come off the meds, that's all I can ask for!

Day SIX

This morning was such a different experience.  We woke up at five am to the nurse coming in to check his blood glucose.  We both exhaled deeply when it showed the number 69.  She went to draw blood when she realized that the IV was not hooked up (again). So they came out again to give him another blood draw (this was number seven!).  He ate a decent breakfast of bacon and I tried my hardest to get him to eat the strawberries and whip cream.  He just wouldn't do it.  I gave him a syringe of olive oil which he DESPISED but gagged down. His ketone level was at 7.1 so we were just waiting on the bicarbonate level. It was 18 yesterday and today came back at a whopping 20!  So like all discharges from the hospital, they told me we could go five hours and eighty-five treasure hunts later.

  We got home and Cavan actually cried at the sight of his siblings.  They were hugs and tears and then they all ran outside to play.  Dinner was, um, rough to say the least.  A wonderful

 Friend made dinner for us but Cavan had a hard time eating his.  Then he went into the pantry and wanted the big box of gold fish.  There is a lot of change that needs to take place in order for him not to be so tempted.  But I made him a kick ass snack of eggs and strawberries! The eggs were filled with mayo and cream and he gobbled them up. I whipped up a serving of pancakes for an emergency and now I am beat.  His numbers tonight were 7.1 for ketones (awesome) and 80 for glucose (double awesome).  I'll probably check him in the middle of the night because I am just scared.  At least for a while.  I'll be posting some yummy pics of his foods and updates periodically now. Here's to hoping for no more breakdowns about goldfish or cupcakes or ice cream! 

And please, please DONT FEED MY KETO KID! Thanks!

DAY FIVE, Part Two

So the afternoon was so much better!! We went to the Seashore Garden to play. He was happy and playing! We had treasure hunts all over the building. We went outside and inside and he had so much fun. You could totally tell when he was getting tired though. And he is freaking smart too. Kenyon went to get coffee and he said, mommy isn't that where they had muffins? I said yes, but that's not part of your magic diet. He seemed ok with it but only because we were having pizza! 

  We get back and we had to give him

Meds. We still have to hold him down but at least he is actually drinking them and not throwing them up or spitting them out. And then came time for pizza. He devoured all of it!! I need to make a million pizzas when I get home and freeze them. 

  We went on more treasure hunts and played and he was so excited when he got his prizes for drinking meds. He wants to go home so badly. They said if he can eat a decent meal tomorrow and his numbers look good, then we are out of here! So pray for his glucose level not to drop like crazy tonight. And for us to go home safely tomorrow. Because as much as I love the Pope, I don't want to be here next week to see him! 

Eating his exchange of carbs from dinner

(About 12 Cheerios)

Here's our Cavan!

Ice cream, he ate four out of five of them!

Day FIVE (Part One)

I am doing a two part update on Cavan. This morning has not been a good one. He woke up with his blood sugar very very low at 35. The lowest it should get on this diet is 46. They gave him an emergency carb exchange of juice to bring it up. After a half an hour it went to 51. They were satisfied with that but they were still concerned with him not eating or drinking. He needed an IV. His acid was still extremely high. Checking out they want him to have an acid (bicarbonate) level of 20. Cavans was 13. He smells like vinegar is pouring out of his pores. He threw up his meds two time again. His blood showed that he was still in ketosis mostly because he was starving himself. I went to class to make pizza, pancakes and more of those ice cream balls! He was supposed to be getting an IV with Kenyon there. When I got back, he had no IV. They stuck him three times and he was screaming and they couldn't get a blood draw. So they let it be. When I got back, Kenyon and I calmed him down and she got it first try! They gave him the fluids and the bicarbonate meds and within an hour he was eating and drinking. We went on a treasure hunt to find coins all over the boardwalk. 

He finished all of his pancakes but not the cream. It's a start!! 

Melissa and Mike are taking Paige home today. It's bittersweet because they have become such good friends. And I am so jealous that they get to go. But I am also super happy for them. They have become such good friends. 

He is resting now. Still smells awful. Waiting to see what tonight brings.

Day FOUR

Okay. This day has two parts. I'll write about them as AM and PM.

AM 

I awoke to Cavan gagging again. He was gagging all through the night. I was up every hour on the hour and watched him as he slept.  When he got up he was lethargic. He was cranky. And he refused to eat. But whats worse is that he wouldn't drink. And THATS a problem. So it came time for meds. The most important med at this point is to get his bicitra (I am probably killing the name). That is the one that he needs to get to lower the acid in his blood. So I was all smart and thought, I am so going to impress Kenyon and give it to him before he gets here. And I am going to do it first so he will get better faster. So I cradle him. I lock his arms and shove the syringe down his throat. He drinks and screams and gags. But he finished all of it. BOO-YA! And then he looks at me and throws up all over me, himself and the floor. Thank God for Melissa (remember my awesome roommate?) because she grabbed blankets and a bucket to help. He passed out hard after that. The nurse came in and we discussed with Nurse Claire (she's the keto goddess) what we should do. He wasn't responding very well and he hadn't eaten in a day. So we decided on an IV of fluids with the medicine he needed mixed in. He fell asleep on and off for the whole Morning. Two hours later his IV was done and he was smiley but still not eating. I was at a loss. He was still lethargic and I was very worried that they were going to start the we can't let him go home conversation.  

PM

At our class in the afternoon we made an egg soufflé. It was so good!! We tried it. We also made these creamsicle candies. They had cream cheese and jello mix and fresh strawberries in them. I was very hopeful. We got back and I learned from Kenyon that all Cavan did was sleep and he ate nothing. I had the soufflé in my hand. My nurse geniusely suggested that I cut a hole in the soufflé and offer it up as a donut. He completely loved it... Until he took a bite. We got six bites from him. I personally thought that was a success! I could tell he wanted more but did not want that donut. So me, the nurse and Kenyon took a trip down to the fridge to grab those ice cream balls. We called the girls on FaceTime (daddy's freaking brilliant idea). He showed the girls his ice cream balls and gobbled up one, then two, then three- four-five and then he looked like he was going to vomit! He didn't.  But man did my kid change!!! We walked through the hall (which he calls the Boardwalk) and he was like, "hi everyone! I eat my magic diet!" And they all started clapping and cheering and whistling! And this time I cried but for a good reason. Then his meds came. He took them all. I still had to hold him down and I still had to force them in but man was it easier knowing he got a little bit better. He got very tired and a bit lethargic after dinner. His blood sugars look good though. He did need another IV because he had a bit of a high heart rate. After it was done though his heart rate was normal. He didn't eat anything else except an exchange of carbs. Which means he got to eat a half of a saltine-just to give you an idea of his carb allowance. He will get another IV bicitric dose which will hopefully boost him again to allow him to eat again. 

So how are his seizures? 

He had four seizures yesterday. He had two seizures today. It will vary until the diet is stable and his body can handle the diet. 

It was a roller coaster kind of day but man, I could totally see the light! Let's hope we continue. 

Oh one more thing, I see you commenting. I see you messaging me. I may not have to write back but I sure appreciate the love! It seriously brightens some of my darkest moments during my day. So, thank you. 

Day THREE

Today was awful. Like I don't even know if I can talk about it because I might cry kind of awful. I should have known when he woke up in the middle of the night gagging. He didn't puke but he gagged in his sleep for most of the night. Then they woke him up at 5:30 to give him a new IV (my little darling knocked his out). He was up after that. He spent most of his morning gagging and screaming. Then came the meds. Oh my god the meds. He didn't want to take them anymore and so I learned how to hold him down with my forearm and shove the meds down his throat. 

  The nurse came in and told me that he has acidosis. Basically, there is acid in his blood (not good but totally common!). So he now has to take a new med to control that. He hates it. So, yeah. There's that. 

  Then surprise! We overbooked our rooms. They had to move us down the hall into a room with Melissa (my keto friend!) and her baby Paige (Ronans age). We got settled in and it was a bit tight and Cavan was losing his mind. 

  So mealtime came and there was a ton of 'Cavan, please eat.' Insert screaming here. He hasn't eaten all day. When the new meds kick in for the acid, he will supposedly eat again. His blood glucose is a bit low so it's important he eats his carb. But he isn't eating. Just.screaming.  So when it came time for class, I ran the hell out of that room. I learned all about what to do if Cavan gets sick on the diet- If he has fevers or the stomach bug etc. They gave us a handy medicine guide on what they can and cannot have. I'll have to go over some of it with my pediatrician (Pete- that was your warning, lol). But we all know the Peturas never get sick so I don't need to worry (HA!!) 

 After class I was back just in time to fight him again. Luckily uncle Scott was here to help! Thanks uncle Scott.  He ate nothing. All he did was tell us he didn't want to eat. He kept screaming for donuts and cupcakes and ice cream (no joke- screaming those words) And when it came to med time, it just got worse. This is normal they said and it's only because of the acid they said. All I know is that Cavan looked me right in the eye and said, "I don't want you. I want a new mommy." And it broke.my.heart. Oh and you better believe that I asked him the question again just to make sure I heard right. And I did. So it was fitting that we saw the social worker the second session.  

There I find out that Cavan was the only kid who had acidosis. He was the only kid not eating. And they told me tomorrow he just might be going to a ratio of 3:1 instead of increasing it to the desired 4:1. I cried a lot today. But Kenyon and Scott got him to eat his whipped cream and they played with him at the "park" at the seashore garden. So there were positives. I just didn't feel as though I got to see any. Not bitching or whining about it- just sad. 

  So evening we got to go take a picture of his bones. It was super quick and super easy. So when we got back to the room, we were told we had to move again back to the room we came from. No, I am not freaking kidding you. So we did. By the time we got settled it was med time again. I was ready to forearm him but Kenyon and I have learned how to cradle him in our arms and force feed him. So Cavan was able to eat hot dog, a pat of butter, and one saltine for dinner!! That is a huge success in my opinion. We didn't get the heavy cream in or the mayo but because he still has acid in his blood that's ok. His ketones are high so that is why he doesn't want to eat. He fell asleep at 6:00 and woke up at eight by a nurse putting a suppository in his ass. He still hasn't pooped and now it is ten o'clock. We are finally going to sleep hoping and praying that tomorrow will be a better day. 

Here's breakfast from today:

And here is what made me smile at night when I had enough

Day TWO

Holy shit. Today was a crazy informational day. I don't even know where to begin.  Cavan woke up and had a kick ass breakfast of bacon, eggs, applesauce, oil (we mixed that into the applesauce) and heavy cream. He had ketchup and mayonnaise too. He devoured every.last.bite. The mayo had some coaxing involved but I just told him it was white ketchup and down the hatch it went! Morning consisted of me meeting with Nurse Claire who explained how to record everything we are doing. I will betesting  his urine everyday. I am looking to make sure his blood is working towards ketosis. I am checking to make sure his glucose level is stable (not too low is super important). I will be checking his PH level as well. I have already "tested out" all of that already and have done it three times. Cavan thinks it's hilarious too because I let him pee right on the stick!

  Lunch was another win. He had chicken breast, cheddar cheese, applesauce, oil, heavy cream (for his milk), mayo. Again, he loved all of it (well minus the cream) and ate it up. The heavy cream he showed a huge dislike for. I had to spoon feed it to him which is NOT going to fly come school (right Ms. Cartaino?!) Need to think of a better way.

  Afternoon class was a trip down elementary school lane. Holy math class! So follow this if you can, Cavan gets exchanges of protein, fat and carbs based on his weight and calorie intake. Obviously, fats are huge, protein and carbs small. Every food item has a gram number associated with it. Take cavans exchange number and multiply it to the food's gram number and voila! You have cavans meal number in grams. Sounds simple until some proteins have fats and then you have to subtract from the fat lists because it's already in the protein. Don't worry- I'll never ask you to make cavans meal! And please no one ever feed him! Now you know there is a HUGE process in finding out what he 

CAN eat. 

  So after our heads were swimming but we think we all got it, we got to make tomorrow's meal! We made a delicious Mac and cheese. We even got to try it and besides the fact that it was super heavy, it was really good. 

We got back to the room right in time for dinner. Cavan was pretty hungry. He was weepy and I was stressed out. Kenyon and I were snappy and Cavan literally grabbed the hot dog right off his plate. I got it in time-thank god! So for dinner he had hot dog, applesauce, corn, butter chunks, and we whipped the cream and mixed in Davincis chocolate syrup. He ate every morsel of dinner! 

The nurse came in to prick his finger and show me how it's done. He had a glucose level of 74 (ok) and ATTENTION everybody!!!! He HIT KETOSIS already! This means his body is now feeding of he fats instead of carbs! Huge! I kind of expected balloons to fall from the sky but they totally didn't. 

  Nighttime snack was ROUGH. It was at 8. If you know me, you know my kids are asleep by 8!  He had to eat three carrots, a pat of butter, five large spoonfuls of cream cheese, and drink about an ounce and a half of cream. Brutal. I was pretty much force feeding him. And now it is 9 and he is stil not asleep. I am okay and besides being stressed at times, am hanging in. The nurse said tomorrow is going to be rough. Kenyon will bare the brunt of it since I will be in class. He has been amazing and we finally found a place that Cavan will hang out tomorrow. Thank god for someone telling us about it! 

If you got through all of this, thanks for sharing our journey with us! And thank you for all of the love and prayers. Keep them coming! Tomorrow will be hard! 

Day ONE

We are here! We didn't get off to a very good start. We got halfway to Philadelphia just to realize that we forgot his meds at home. We turned around and drove forty minutes home just to come back again. I thought I was going to kill Kenyon (even though he had nothing to do with it, he was easy to blame). 

  We got to CHOP and it took about thirty five minutes to check in and get settled. We ran into our friend Melissa who will be going through the program with her daughter Paige. We met at keto class and decided to come together for support! 

  After looking around and playing in the playroom, we met with our dietician, Sue who gave us the meal schedule for the week. Cavan will be starting tomorrow morning in a ratio of 2:1. Bacon, eggs, and oil and cream are on the menu for breakfast! Bacon and eggs won't be hard but oil and heavy cream? Ummm....

  We are waiting for the IV team to come in and give him his IV. It's 7:34 and he is already in bed, Jammies on- watching Fresh Beat Band of Spies on the iPad. 

  Overall, Cavan seems okay. Happy. He knows we are here for his Magic Diet. We have read him the book, Gordy and the Magic Diet enough times for him to know there is a monster inside of him (epilepsy) and the diet will make it go away.  

  8:00 now and IV team just left. Cavan is awesome and didn't flinch at all. He just said, "what you doin'?" And "you hurtin' me." But he didn't cry and didn't stop watching the iPad. Off to bed because God only knows what tomorrow might bring.

Getting Ready

So we are getting ready to go to CHOP on Monday. Cavan had to get blood work last week at 7:00 AM before food and before his meds. He was a rockstar. Doesn't even flinch when they draw blood. A Scooby Doo on the iPad helps a lot! 

Yesterday we had to go to Philly for a pre-admission meeting. We had Ronan, Anya and Cavan and boy was it an adventure! They said it would be about an hour. Three hours later we were home and were exhausted! They gave us this manual to go over this weekend to give us an idea of what would happen. I must say, it's crazy how much information is in here. But it was so helpful! And yes- I already read it.  We purchased some things that Cavan would need to help him ease into the diet. We are good to go for Monday morning! 

I think I am feeling kind of eh about it. Overwhelmed would be a good way to describe it. There is just so much information I have to learn. And fast.  I am not looking forward to beginning it but I am so looking forward to the outcome! 

What is the Ketogenic Diet?

So basically, in very nontechnical terms, the Ketogenic Diet is a diet that is a very high fat diet and no carbs. It is based on a ratio of 4:1. 4 fats to every 1 carb/protein. Our bodies work off of the sugars and glucose that come from carbs. The Ketogenic diet switches this and makes the brain think that it's not getting any sugars at all. And so it thinks the person is starving. Obviously, Cavan won't be starving. He will just be getting his sugars from all of that fat he will be ingesting. Somewhere in this whole my-body-is-starving process- seizures stop. They don't know how or why but they do for most kids. 

  It is a very complicated and risky diet in the beginning. He could become dehydrated. He could get too much acid in his blood. He could develop new or more seizures in the beginning. He will get sick (who wouldn't eating all of that fat!). That is why it is so important we be admitted into CHOP for the week so Cavan can be monitored. He will receive IV fluids. He may receive medications to help alleviate the acid in his blood. No one should try this at home! 😉

  We will begin the diet with breakfast on Tuesday morning. I will show you what it all entails once I learn the process.

OMG Tomorrow's the Day

So, I don't really know how it got to be the day before. Time flies. We got a call from the admission center saying that our check in time (I am pretending we are going away on some exotic adventure) is going to be at 3:00 PM. Anyone who knows me knows that this sucks. I would much rather go at the crack of dawn so that I can start the process and not dwell on it all day. But it is what it is. Kenyon is the best husband ever and ran me a bath last night filled with eucalyptus bubbles to try and relax me. It worked. And then panic set in. I started thinking about the moment we leave the hospital. See, I've never been one to worry about being IN the hospital because we have so much help and back up. It's that moment that they hand you the discharge papers and you are on your way. And then I take him home. And I have to worry about him eating the right stuff on my watch. Then I started thinking about how sick he will be. And how he might puke a lot. Or how he will be fighting me to drink olive oil. Or perhaps he will just lay there with IVs in him hating on me.  Yes, it is time to panic. I really try to focus on what will come out of it. Hopefully we will have a kid who is seizure and med free. Maybe not right away but down the road. That is the only thing holding me together from having a major panic attack. #whateverittakes

Why are we doing the Ketogenic Diet?

Pretty much, we are sick of his meds. He was taking a ton of different types of medications just to try and control his seizures. It wasn't working. We had tried Keppra, Depakote, Lamotrigine, Onfi, and I might possibly be forgetting some! And they weren't even working. The side  effects were terrible. From screaming for hours to being up all night, losing his appetite, gaining appetite, Aggressive behavior, impulsive behavior- I could go on and on. Now here's the thing. It's stopped his grand Mal seizures. Then he developed Absence seizures and Drop seizures. And no matter what the drug, we couldn't get it under control. He continued to have about five to ten seizures a day on average. So we kept upping his meds (increasing the amount he takes). And the more we increased the better his seizures were controlled. Unfortunately the more we increased his meds we started to lose Cavan. We had trouble controlling his temper. We didn't know how to help his highs and lows. We weren't sure how to discipline his behavior when he would go after his siblings. And then they told us about this diet. And it seemed like the right answer. A way for him to not have seizures and come off the meds? We were quite intrigued knowing that there had to be a catch... 

Just what is this diet all about we wondered??