A Year In...

It's been way too long. And for that, I apologize! Cavan is officially one year into this diet. It seems like ages and ages ago that we were there. I am so happy that I blogged that week. It's so important for us to see just how far he has come. So let's give you a little update on our favorite Keto Kid, Cavan!

  He has started Kindergarten at the same elementary school that his sisters attend. He no longer has an IEP through the special education department because he exceeded where they wanted him to be. This came with some issues because he lost his one on one aide. They decided to give him an aide for all meal times (which in kindergarten that takes up a lot of the day!). So basically he has an aide for like three hours a day. He seems to be doing well- he is making friends and the diet is still being maintained. 

  We have weaned off one of his medications. It was the medication that controlled his absence seizures and drop seizures. It was a very slow wean over the summer and we watched him very carefully. Not one relapse. Not one seizure. Our goal is to get him off all medication. The lamictal is the one that controls his grand mal seizures. He takes it twice a day (8 pills a day). Removing that scares the hell out of me. It's the one that's been constant from the beginning. Our kick ass neurologist told us we could wait a bit before doing that. Having him get used to kindergarten (a stressor) is important before we wean that. That made me feel a lot better! 

  The differences we see in Cavan are amazing. He is loving, aware of things now, has better behavior and overall understands a lot more. Removing the drugs were key for him. We got him back. There are still areas we need to work on... His speech, his memory gets fuzzy a lot (especially names), and his sleep habits are all screwed up because he is starving or restless. But man, have we come far. And I thank God for that everyday! We were so so lucky this boy was an early responder to the diet and took to it right away. And CHOP, well, they are amazing too. Without them, who knows where we would be with Cavan. So to everyone considering this diet or to those who just want to know about it- it's a life changer. And we are happily celebrating one year seizure free.

Purple Party Thank You!

First off, I want to let everyone know that the Purple Party was a HUGE success! When starting out, I thought that I might be able to raise about $500 for CHOP. The numbers and donations are still coming in but what I calculated (with my elementary school math) shows that we have raised close to $4,000 if not more!! Overwhelmingly awesome! 

  I want to thank everyone who came and partied it up, who donated something, who offered their time, who donated online and those that offered their services. It was amazing. And the families all had a fabulous time. We are definitely going to this again. 

Here is a link for the pictures that were taken from the Purple Party! Thank you Amy Pinard Photography for taking these! 

http://amypinardphotography.pixieset.com/epilepsyawarenesspurpleparty/

Lets Take A Moment

I want to take a moment to thank Cavan's teachers. Everyday they work hard to make Cavan a better person. They see the potential he has. They work with me to feed him this diet and inform me anytime if there is something off about him. They record his bad moments for me but even better- they record his fantastic moments as well. They love him. They truly love him. And with their help, Cavan has become so much better- more disciplined, follows directions, and has far surpassed his goals. This is why we are so lucky to live in this school district. With his teachers, he will soar.

Cavan flying a kite at school to learn about wind. 

AWARENESS

So I have a little story to tell. And this is not a story meant to put anyone down AT.ALL. In fact- this is the best story ever to bring up why I have decided to take on  #cavanspurpleparty.  Awareness. That's it. One simple word. And yet it is so hard to come by. 

  It was time to give Cavan his syringes of cream at dinner time. We weren't at home. I am trying to be somewhat vague about these details so someone doesn't say- oh shit- that was me! So anyway- I was struggling to give them to him. He didn't want them and it was somewhat embarrassing. It was a hold him down kind of night and insert syringe into mouth forcefully. So as I did this, a woman came up to me and said, "what are you doing?" So quickly and breathlessly, I tried to explain to her that Cavan was epileptic and he was on a very specialized diet to control his seizures. She looked at me with a blank stare. So again, I said. He gets seizures and this stops them. I didn't know how else to explain it to her quickly without Cavan escaping his last four squirters. So she looks at me and says, "oh ok! Now I understand. We have had to change our diets too when we got indigestion and intolerance." I actually laughed out loud. I couldn't help it. The giggles just kept coming. So I really have a lot of work to do. We need to educate people on what Epilespy is- forget going into the diet! Do people even KNOW what it is? 

  When I spoke to Kenyon about it, he admitted that he didn't know if he knew the full picture of what Epilepsy was before Cavan. Huh. Interesting. So I went out and bought a kid friendly book explaining what Epilespy is and I am heading to the schools this week! Time to educate. Time to make people aware. What are YOU going to do to help spread awareness? Help me help people understand! 

One more week....

This week has been a bit rough on Cavan. He came down with some weird stomach thing. Not eating and not throwing up... Belly just felt weird. I kept him home on Monday from school. Nothing really happened so he went to school the rest of the week. He ate really well for his teacher (of course) and wouldn't eat for me at home. His ketones were through the roof which meant his body was fighting something (and his not eating probably had a lot to do with that too). He was home again today because PEECH has off every other Friday. And this is how I KNOW he is feeling off...

A nap in the middle of the afternoon?! I'll take it but it definitely means my cute Keto Kid doesn't feel well. But enough about him (lol) lets talk Purple Party!

  We are one week out. I am kind of- sort of dying as we get closer. I apologize for any kinks you may encounter. This party got so big so fast that my party organizing skills are being tested to the max. We have had a lot more vendors join on since I last blogged. There will definitely be something for everyone. Philadelphia pretzel Factory of Ewing has given a wonderful discount for pretzels so they will be on sale for $1.00 each! Of course, all profits go directly to CHOP Keto Diet Division. I can't even begin to type up all of the vendors that will be  in attendance. Just come and have fun! I have tried to make it so that the kids will learn a little something as well. It is Epilepsy Awareness Day after all! 

Recap for the day: 

March 26

Hillbilly Hall in Hopewell, NJ

11-2

Balloon Art 11-1

Face Painting 11:30-1:30

Food 11:30-1

Pretzels while supplies last

Art Sparks $5 per child (to be donated to CHOP)

Vendors for adults (profits to CHOP)

$5 Below-Awareness Table

$20 suggested donation at door!

Hope you can all make it! Looking forward to seeing you there!

Heartbreaking

I don't really have any other way to describe it. The past week has been terrible. Cavan is going through something that we aren't really sure what it is. Could have something to do with his brain, could have something to do with him being four. We don't know. About midday all week he has literally snapped. Something sets him off (whether it be him not wanting to eat or him not raising his hand etc) and sends him into a tailspin. He starts by shutting his eyes really tight. Then he begins to wail. It's a repetitive moaning/whining/scream cry. No tears come out. But he can't seem to stop himself. Or doesn't want to? We don't know. He does it for over an hour. Yesterday I had to go get him because he couldn't get on the bus like that. Today was his Valentines Day party. He was awesome all morning and then snap! He did it again. When I arrived he refused to open his eyes. He couldn't walk (which scared the hell out of me) but when asked why he said because his eyes were closed. I tried to take him to the party which was held in the cafeteria. He wouldn't even participate. Hell, he wouldn't even open his eyes. I had Ronan with me who was following every instruction and having a blast. But Cavan was still crying. And I looked around the room and realized.... My kid is different. And it broke my heart. And I felt like if I stayed in that cafeteria one more minute I would suffocate. And I had to get out of there. Because my kid can't play normally and I have no freaking idea why. So we left. And the minute he walked out the door, he was normal. Which leads me to believe that this is behavioral. And I still don't know what to do. But for now- I'll just cry and drink my Venti Mocha. 

Happy when we are leaving...

Thank God for Drive thrus...

This is Big. This is REAL Big.

It started out as this, "hey Kenyon, wouldn't it be cool if we did like a little party for Epilepsy Awareness Day?" His response was a look. I couldn't really tell what he meant with the look that he gave me- it was either are you freaking kidding me? Or go for it! So I chose the latter. 

When I first planned this in my head, it was a party at the house. Everyone wears purple- we make purple Martinis (um, priorities much?), maybe grab a couple of vendors to make some money for CHOP. But then I thought God I hate cleaning my house. So we decided on having out. The more I thought about it, the more I wanted it kid friendly (plus alcohol!). Because who is this really for? All of the kids like Cavan. So we came up with games and activities. We thought about what things kids love when we go to fairs and carnivals etc. and we started booking them. 

 And then things got big. They got really big. Because you know why? We live in a kick ass town and we have kick ass friends. Everyone is chipping in and donating. Everyone is supplying me with ideas and donating time. And I am overwhelmed. In a totally good way of course! But man is this thing going to be fun. We will have vendors, and kids activities. We will have face painters and balloon artists. We will have food! Free food! Drinks are on you, hahaha! That could get pricey! But best of all- we will come together. And be happy. And support something that my Keto kid is trying to beat- hell- at times he's just trying to maintain it. But we will do it together. And we will raise awareness for epilepsy. So that hopefully, in some time, someone can find a cure. Hope to see YOU there!

Well Shit- That Sucks

As many of you know, Cavan had the stomach bug. In the past, seizures would completely take over when he was sick. They would skyrocket in number. So you can imagine my surprise when he didn't have one seizure yesterday. He even puked up his meds yesterday morning. And he was so loving! Every word out of his mouth was 'Mommy, I love you. Mommy, you fill my bucket. Mommy I love maevey.' Etc. I was like damn! This kid should get sick everyday! He went to bed easily and woke up this morning with no problem. 

 His numbers were a little off this morning. I expected that though since he hasn't been eating at all. His ketones were through the roof and his blood sugar was low. But he ate a lot of food this morning- certainly not all of it but enough. I sent him to school happy. 

 Right after feeding Anya and Ronan lunch, his teacher called to tell me that they are pretty sure he had an absence seizure. It took my breath away. Noooooo I wanted to scream! Five months seizure free and this stupid sickness reset that. It sucks. Everything they described sounded like it. It's just so hard when I'm

Not there. Like- maybe it didn't reallllly happen. Not that I don't believe them but I guess I just don't WANT to believe them. Anyway, Kenyon went down there and checked his numbers and evaluated him with the school nurse. He was being his normal crazy Cavan. So we left him there. Let's hope this was a fluke. Let's hope this stupid stomach bug made this happen and we aren't going to go downhill from here. Let's hope I don't get any more phone calls. And tomorrow, we start at day 1 again. I hate Epilepsy.

A New Chapter

So we went to CHOP this morning. I had to wake up at 5 AM just to get our stuff together. It was brutal. Cavan woke up at 6:15 (thank God) because we had to be out the door by 6:30. He got dressed, hair spiked and took his meds and we walked out at 6:29! Granted I don't think he brushed his teeth but hey- beggars can't be choosers. 

  We got to CHOP at 7:30. We checked in, he got weighed (he grew a quarter of an inch and gained over a pound!) and then they took us in the back. Our first appointment is with the Keto team. They go over his bloodwork, check his pee stick numbers and go over his blood sugar. They ask me questions like how is he behaving? Do we notice a Big difference etc... This part takes 2.2 seconds because we are lucky enough to be able to say he has been seizure free for four months now. We tell them all about the good things we see and how well he is doing in school. They seem surprised and say- wow! We love appointments like this and it makes me realize how lucky we are. Not to get all sappy and stuff but we really are so lucky he is responding to this diet. 

  After the Keto team leaves, we then meet with our dietitian. I actually had a lot to talk to her about. Cavan hasn't really been finishing his meals.   He fights me and he fights his teacher about eating. It's frustrating as hell. I feel like I am force feeding him a lot and I am lucky he's not gagging it all up. She decided to change his numbers a bit and lower his calories to see if that makes him hungrier for meals. Hopefully then he will be devouring food instead of looking at me like I am crazy when I am trying to spoon feed him. She also gave me some tips on how to incorporate fats better. He hasn't  been doing so well with the squirters (syringes of oil and cream). I don't know if you know this but I have been driving to school everyday just to feed him his squirters. Yeah, not so much fun when school is 12 minutes away and you have two babies who are very close to naptime that are in the car with you! So I am going to try and use some of her ideas and see if they work. 

  After we meet with the dietitian, we can finally meet with our neurologist. She seriously kicks ass and if it were up to me we would be drinking together on weekends. I was very honest with her and told her my fears and concerns and pretty much said that I didn't want him to seize all over the place again. She was very confident that Cavan was doing well enough that we could begin to wean the Onfi. GAH! So so excited and yet it's like shit! Now I have to watch him 24/7 again and see how he does. Hopefully the diet does it's job and just replaces his med. we took him off of his midday dose. It's going to be a really slow wean. Brain drugs aren't to be messed with. So after a while with him not on the midday dose, we will talk again about removing another dose. Verrrrrry slowly. I am okay with that.  So today was day one of no Onfi in the afternoon! Crazy. But in the right direction! 

  Cavan was so done after all of these appointments. Poor Dr. D got to see the ugly side of Cavan as he screamed in her face telling her not to touch him. So we left quickly and definitely not quietly as he spilled my full mug of coffee all over the neurology floor. Awesome. 

  But we made it out alive. And I was able to go to Winter Theme day at school with him. He was so excited! We have been toying with the idea of holding him back a year in school. But let me tell you- I was so impressed with how well he did today in the classroom setting that I'm not sure that would be the right choice. More on that later! I'll leave you with a pic from winter day at preschool. I made snowflake ice creams for everyone in the class today! He was so happy he got to share his snack! One of the boys liked it so much he asked to take all of the leftovers home. I call that success. Hell, I guess the whole day was successful. And now- wine!

Time is Flying

Cavan is still doing so well on the diet! He is still on a ratio of 2.5:1. I am afraid to even type this because I don't want to jinx myself but he is seizure free for about four months now. Like none. At all. We are going to CHOP this week. Kenyon is all about trying to wean Cavan off of the drug, Onfi. I have such mixed feelings about it. He is doing so, so well. If we pull him off, what if he goes back to having seizures?? I mean, I know what they would do. They would probably raise his ratio if he could handle it. Maybe even put him back on the drug. But why ruin a good thing? So that leads us to making a list of pros and cons. 

  He has changed so much on this diet. He gives me kisses goodnight now and tells me he loves me. Do you realize how long that has taken? He still has breakdowns every so often. You can literally see the meds taking over his body. THAT is what Kenyon wants to see go. But at what expense? Hey- I can hope that we wean the Onfi and nothing changes. That's the whole reason we started this diet! Time will tell. Maybe we will go and our neurologist will tell us that she is strongly against weaning him until spring. I can speculate all the way to the end of the Bachelor. But I won't be able to let you know what happens until Thursday. Here's to hoping that whatever decision we all make- he continues to thrive on the diet. 

My Super Cavan

Always smiling!

New Year, New Goals

So it's 2016. I feel like we have started this diet ages ago! We have gotten over a lot of road bumps. Illnesses have come and gone and then come again. With each sickness Cavan has shown me that this diet is working. He does things that he used to do when he would seize a lot. He drools, he chews on everything (especially his shirts!) and he falls asleep a lot. But this time around he is missing one thing. Seizures. He would normally seize a lot while sick. Like a lot- a lot. I would see close to twenty drop seizures and/or absence seizures a day when he was sick. So it's kind of amazing that he has had none this winter through the illnesses.  I know we have a lot more months to go but it's been a great start. 

  We have some pretty hefty goals for 2016. We would love to see him come off the Onfi. That is the drug that helped his drop seizures and his absence seizures. It also made him very aggressive and at times moody. It had awesome pros and horrible cons. With the diet in place we feel like we can begin the process to remove that medication. We see the keto team and the neurologist this month. Hopefully they agree! 

Wishing you all a very Happy New Year from Cavan the Keto Kid- and his parents too! 

First time seeing fireworks!

Cavan being a typical four year old boy!