Endure to the end

In the beginning… There was some worry, concern and a small amount of sadness. We were ready to find the problem and then just as quickly, find the remedy and ta da… all better! Life doesn't always work out the way we plan it does it?

After years of searching for a remedy we've seen half a dozen doctors, tried 2 failed medications, a handful of natural healing approaches and are currently knee deep in the second diet (MAD) that we hope and pray will be the miracle we've been searching for. It has come with much struggle. 

The MAD diet continues...

We haven't had as good of a day as we did last Sunday the 22nd. However, he's doing better on the MAD diet than he did on the GAPS diet. His seizures are about 9 everyday right now and we're hoping that they will decrease even more soon. Most people see a change within the first couple of weeks. The only problem is most people who start this diet, start with a dietitian and are hospitalized for the first couple of days. Bodi's neurologist thought I was educated enough on the whole thing to just get started. Im anxious to get in with the dietitian soon to make sure I'm doing everything right. Our apt. isn't until April 28th but we are first priority if there's a cancellation so fingers crossed!

Bodi's spirits are better the last couple of days. I taught him how to read labels, use my carb app to keep his carbs under 15/day and make a few of his own meals… EMPOWERING!

Here's what a typical day of meals looks like for him:

scrambled eggs in heavy cream with 3 slices of apple
turkey slices rolled with cheese, carrots and 1TBS ranch, 3 slices of apple
smoothie after school (heavy cream, tbs peanut butter, 1/2tbs cocoa pwd, ice, capful vanilla
cheese burger in lettuce with homemade condiments, carrots

Yesterday I found a low carb tortilla (3 carbs!) and he was able to have a quesadilla. He was thrilled!

I'm going to have Bodi add some thoughts about how he is dealing with this journey later...

Bodi's journey with epilepsy

This boy of mine…

About 4 years ago Bodi started complaining of occasional "spells" where he would feel like he had passed out for a short period of time. It only happened a few times that we can recall in the first year or so and we wondered if he had not eaten enough or maybe was dehydrated. When they started to get more frequent (about 2-3/month) and we were able to see them happen, we realized there was something more going on.

We took him to his Pediatrician who sent us to a Neurologist who didn't' think they were seizures and sent us to a Cardiologist. After an EEG, EKG, MRI and blood tests all showed no abnormalities we decided to take some time off from doctors.

Unfortunately about a year later, his "spells" were getting a little more frequent. Still only about 3-4 every few weeks. We found a different neurologist and got an EEG while he was having a "dizzy day". The EEG showed "sparks" of abnormal activity on the right side of his brain. He was diagnosed by Dr. Goldstein with epilepsy in January of 2013.

We started on a rx called Oxcarbazepine soon after and his seizures became a little more frequent and he felt very tired and dizzy all of the time. We decided to wean him off of the drug. After another set of blood tests and a video EEG, our Neuro referred us to another Doctor at primary children's hospital. His name was Dr. Van Orman. We got into see him within the month. He suggested trying another medication. He also knew we were LDS (Mormon) and suggested Bodi receive a priesthood blessing. I knew that was something we needed to do for some time and thought it was so amazing that it was suggested by our Neurologist.

Bodi received a blessing and we started on the new medication (Keppra) in December of 2013. Aaron gave him his blessing. There were many close friends, neighbors and family members fasting and praying for him. In the blessing Aaron didn't feel prompted to bless him to be healed but what he did say was profound and gave me great strength. One thing he said was that Heavenly Father needed Bodi to endure this trial to help shape him into the person he needed him to become. I can't imagine what lies ahead in Bodi's future but I do know how special he is and always has been. I know he will get through this and will be an even better person because of it.

Keppra proved to be even worse then the first drug for Bodi. He was dizzy all the time and was having more seizures than before. His Dr. decided to up the dose and see if that helped. Bad call.  He went from having 3-4 seizures every few weeks to having 15-20 EVERY SINGLE DAY! Needless to say we decided to wean him off of Keppra. We expected he would go back to where he was before the medication. Unfortunatly, that wasn't the case. He continued to have 15-20 seizures every day well over a month after coming off the drug. We were devastated to say the least.

We did a lot of reading, research and praying (along with some natural therapies that didn't really help) trying to decide what our next step would be.  Then a friend of mine told me about a diet called GAPS (Gut and Psychological Syndrome). I looked into it and felt like it was something we needed to give a try. I read books, shopped and cooked to prepare to start the new diet. Then, on February 23rd we gave Bodi another blessing and got started.

The first week was very difficult for Bodi and I. I was always in the kitchen preparing, cleaning and then shopping for meals and Bodi wasn't really enjoying the few choices he had for food. He also started feeling a bit nauseous mid week. He really tried not to complain though. He always thanks me for everything I make him and never cheats. By the end of the week we had hope! He started having half as many seizures! This lasted a few days but then the seizures began to increase again.

We have been on the diet now for a month and have seen little improvement. Bodi's seizures have also changed. He is falling more, turning to the right now and his eyes are shaking. He has hit his head a few times and we became really worried.

We decided to head back to the Dr. after we got back from a short weekend to Cali. for my grandma's funeral. We ended up seeing a new Dr that wasn't as expensive and had a great reputation at Primary children's.

March 17th- Dr. Marita got all caught up to speed on Bodi and let us know that Bodi's seizures needed to be treated urgently. She posed a few options: 1) brain surgery- Bodi is a good candidate because his seizures are focal on the right side of his brain. They would do a 48hr EEG and another MRI to pin point where the sparks were coming from and then he'd see a Neuro Physchologist who would run tests to decide whether or not that was a part of his brain that could be removed. Needless to say this option made me feel like I had an elephant sitting on my chest… SCARY! 2) One more drug called Vimpat. She thinks because Bodi's seizures have changes into complex partial seizures, this drug "should" "could" "might" be more effective than the other 2… Hmmm… SCARY! 3) Keep on working on the diet or maybe switch to the Ketogenic or Modified Atkins diet.

Dr. Marita feels if we don't get these under control sooner than later, they could get much worse and cross his entire brain causing jerking and possibly permanent brain damage… Not good news. :(

It's been a very emotional week trying to decide what the next step is for Bodi.  He and Aaron both want to start the new medication. I'm having a hard time finding peace with that decision… I have prayed and prayed and prayed, but have still not found the peace I would like to feel before trying a new medication that could possibly make Bodi's seizures worse.

In the mean time I have done a lot of reading about the Modified Atkins Diet (MAD). I decided to tweak our current diet to a lower carbohydrate, hight protein diet closer to the MAD and see what happens…

March 22nd- Day 1- Bodi has had only 6 seizures today! I hope and pray we are on the right track!!

More to come...

Iditarod 2012

          I went to the 2012 Iditarod.  The Iditarod is a huge dogsledding race over 1000 Miles long.  I went and watched 67 mushers at the start of this huge race take off into the forest.  The race has over 20 checkpoints.  Each is within fifty miles of each other. They stop at the checkpoint to rest and eat.  After eight or so hours they are back on the trail moving to the next checkpoint and the finish line. The race starts at Anchorage and moves on to Nome.  The race is started with sixteen dogs.  When a dog gets too tired, they ride in the sled bag to the next checkpoint.  There, they are dropped off and flown back to Anchorage.
            A musher named DeeDee Jonrowe mushes in the iditarod.  She wears completely pink, all her dogs wear pink harnesses, pink booties, and a pink sled.  She has never won the Iditarod but is considered one of the "oldies"  for racing the Iditarod thirty times.

        While we were there we ate reindeer hot dogs.  They tasted surprisingly different than normal hotdogs... More DELICIOUS!

         At my great uncles house where we were staying, there were three moose.  They stood right outside the kitchen window. With the window open, I could have touched one!  Moose are very dangerous. If you get near one and irritate it, It will kick you to death.

         There were three really cute dogs and a cat named miss kitty, (she thinks she is a dog, Hence the name).   They would lay on you when you sat on the couch.  They are all really nice show dogs.  The one in the picture is named Yager, I don't know if I spelled that right.
I loved those dogs while I was there and miss them right now.
       

 



                  -Bodi

Bodi's dogsled adventures

Great day to be outdoors!

What a great day to be outdoors! The colors were amazing! I love the Fall in Utah! We are so blessed to live in such an amazing place where we can enjoy the changes of each season.

Dad's first stand up paddle board...

Dad finally got a chance to try stand up surfing. He got the hang of it and had a great time... Unfortunately he has a few battle wounds though. He doesn't complain cause it was worth it!