Fasten your seatbelt- We’ve begun the initial Descent.

It’s kind of crazy to see how far we have come. Cavan had a neurology appointment with his Keto team at the end of August. We met with the nurse who checks his bloodwork etc, we met with his dieticians, we met with the chef (Paige) and then we made another appointment for his EEG and to see his neurologist. Everything checked out perfectly with the first round with his team. The nurse then explained to us that he was ready to go to begin his wean from the diet. WAIT. WHAT? Luckily. Kenyon was at the appointment while I was working and he saw my panic instead of them.
A week later we went to see our favorite neurologist. She explained to me that this is what we wanted. This is exactly what we were hoping for. She looked at me and was like Mom... are you ready for this? I looked right at her and said. NO! She laughed and told me I said the same thing when we were supposed to wean him off his medications. I am not a huge fan of change. I despise it and am scared of it. I hate new beginnings. She then again looked right at me and said- He’s ready Erin. Sigh. She’s right. He overcame having 22 seizures per day! We busted our asses to make food for him for THREE years! He is perfect. And yet I am so terrified. Like what if he starts seizing again after we take him off the diet? What if his ADHD flairs when we remove the diet. She had answers for everything of course. I mean, she’s a freaking brain doctor. Of course she does. I just needed to trust in everyone. The diet, the plan, Cavan, her, God! Okay- time to wean.
  Our goal is to have him completely off the diet by the end of October. Holy shit. That’s fast. But they wean him .25 down every two weeks. Since his diet is low to begin with, then it wouldn’t take long to wean him. We have started and are about half way through. He is now getting so much kore food then he is used to. He actually ate chicken parm tonight! No joke- I mean, I had to weigh everything but he ate it! He is loving getting more carbs- we are trying to be really careful about how much sugar he is getting etc. I just want him to be okay, you know? Like we’ve been good for three years. But he isn’t growing. He’s way behind on the charts on that. He needs to have his bones scanned a lot because this diet isn’t great for long periods of time. And I know that. I just need to trust in the Lord (and the docs!) that this is what is right for him. Because ready or not- we have begun to descend. I’m just hoping for no turbulence along the way 😉

Our Next Step

So it’s been a really long time since blogging. It’s easy to stop writing and updating when all is good. And let’s be honest, there is Facebook and Twitter and all of those other social media avenues I can use to update  people. But sometimes, it’s therapeutic to write it all down. It’s a way (for me) to just think it out. Cavan has been doing amazingly well. He is thriving in school. We made the decision to hold him back and have him repeat kindergarten. It was one of the best things we could have done for him. He is all caught up academically and they have even discussed discontinuing the occupational therapy. I fully support that decision. He responds better to kids this age and developmentally I just think it’s where he is- which totally makes sense since he lost parts of his life.
  We began to wean him from his very last medication. The diet has been working so well and his (crazy awesome) neurologist decided it might be time to wean him. So back in September and October we began removing his medication. He was taking four pills in the morning and four pills in the evening. We removed on pill from each part of the day for a week. Then the next week, took another part of the pill away. See, it was going well- a little too well for us Petura’s. 😉 By the time we got to one pill  both day and night a whole new Cavan came forward. I wanted to put that Cavan back in a closet. The epilepsy medication he is on is also a mood stabilizer used for depression, anxiety etc. So when we took it away, Cavans hyperactivity went through the roof. Like crazy. I can’t even begin to give you scenarios. It was that bad. His teacher was calling and letting me know he was out of control which didn’t surprise me because we were seeing it at home. So we called his neurologist and we increased his medication back to the last point that he was in control of his body. And we have been at a standstill since then.
  Like magic, the wonderful people of CHOP neuropsychology called and let us know that Cavan was up for his appointment. It was a year waitlist people! That’s crazy! But it came at just the right time. We are going to have him evaluated and hopefully get him off his medication and under control for his hyperactivity. What will that include? 🤷🏼‍♀️ I’m not a doctor. But I do know that we will be open to anything that will help Cavan thrive and continue to be his loving, bubbly self. That has always been our goal from day one- hell- that’s why we started this diet! So wish us luck because tomorrow he gets to be there from 8:30-4:30. With appointments that long, I’m sure they’ll see the real Cav! Stay tuned for follow up info...

Kindergarten

So we are about halfway through Kindergarten already! I'm not exactly sure where the time went.  Cavan has made many friends in Kindergarten but we have had some issues along the way.  His maturity level is obviously different compared to other kids in his class.  I guess this makes sense in so many ways.  He literally lost a year of his life ages 3-4 because he was having so many seizures.  I went through a lot of emotions when we had a discussion with his teacher and 504 team whether or not he would be ready for first grade.  I was angry at first because really in my eyes, Cavan is perfect.  Once I got off my high horse though I realized that I did see Cavan playing inappropriately after school on the playground.  And then I thought about all of the other times that he lacked focus at home, concentrating on what he has to do. Don't get me wrong.  He has come SO.FAR.  But when compared to other kids going into first grade maybe not far enough .  So Kenyon and I have pretty much made the decision that he will remain in Kindergarten for one more year.  It'll give him the gift of time. Our goal as parents is to put him in a situation where he will be able to succeed and we believe he will be able to do that- just next year.  That, and I am a kick ass Kindergarten room parent so another year is a benefit to the teachers as well.    ;) 

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!