Birthday Boy!

Yesterday my big boy turned 4! It snuck up on us all. With the new diet and training a new puppy our lives have just been crazy! This birthday was so different. It was his first on the keto diet with no special snacks or cake, and it was the first birthday as a child with epilepsy. I look back on last year and remember thinking oh, I wonder if we should start to be concerned with his speech, he doesn't talk as well as the other kids, and does he know everything he should? We didn't know these were signs of something much greater going on in his head. Yesterday I knew he didn't know what other 4 year olds knew, and I am well aware that he is going to be struggling in school for years to come, but I asked him how old he was and he put up 4 fingers and then counted them, "One, two, seven eight".  That's better than he's been able to count in a long time! He's still young enough that he doesn't know he's different, and that makes it easier for him. I always think what if I could go back to that day and not give him that flu shot. We could have possibly put this off for years. But then maybe it's better that this all started before he was school aged and we can get things mostly sorted out before he's 5 or 6. Who knows which would be better.

His birthday morning pic, have one every year! This year his bed is in our room....

We had decided to get Ethan a play house for his birthday. We had picked one out, but of course waited until the day before his birthday to get it. Mike went down to the store and they didn't have it.... Plan B. There was another one somewhere else I liked so he called down there to see if they had it. Out of stock. Ok, there was one other store in town so he called down there. Four in stock! He drove to the other side of town to pick it up and they couldn't find them anywhere! 30 minutes later they did find them still on the truck. He loaded it up and took it home so we could have it put together for the morning. He worked on it for hours until well past midnight outside in the snow. He got it done, and it was well worth it to see the look on his face!

 All finished! Why there is snow at the end of April I'll never understand.

 Super excited

He came inside for breakfast and to open presents from Aunt Cole. She always gets just what he loves. This year it was Scooby Doo and Battle Force 5 stuff! He was so happy and excited.

 

And what does any birthday boy want for breakfast? Well probably not what Ethan had; 20 grams egg, 21 grams butter, 40 grams strawberries, 12 grams bacon, and 67 grams of heavy cream. Just in case you're curious, that is about a third of an egg, melted into just as much butter, about 2.5 ounces of cream, 1.5 strawberries and a piece and a half of bacon. His stomach has finally adjusted to the smaller portions and he actually has a hard time finishing his food now.

Eating on the couch watching his new movie from Aunt Cole!

I have to add, earlier in the week I let him cheat and open presents from Great Grandma and Grandpa. They got him an awesome soccer ball thing that is like playing air hockey in your kitchen, and a cute interactive Thomas book that he loves! Taylor loves it too:)

The day was so unlike a regular birthday. I wished I could take him to a playground, or out to eat or something. It just isn't possible for him, not yet anyway. He is still having daily seizures, but we have gotten a few seizure free days out of him since starting the diet. He has only drop seizures now though. A quick 2 second jerk or fall is so much easier to handle than a 15 minute all out tonic-clonic seizure where it looks like your child is dying. This diet, as much as a pain as it is, is an absolute miracle! ABC did a segment on the diet the other day, along with an article. I was on the verge of tears watching the other kids seize, but realizing they are just like him. It was just crazy to see our life through other people. Check out the article if you have a minute: http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995

Making a birthday wish!.... And spreading weeds all through the yard!

Ethan didn't have a party, he can't have a party. It would be way too exciting for him, and could cause seizures that could land him in the hospital. It's sad, but a fact of life now days. We have to keep things low key. We are taking him to a park this weekend to just run through the fields, and his grandparents are coming. That's pushing it excitement wise. I checked the forecast and it's a high of 48 on Sunday when we want to go. Cold weather go away! All I want is once nice fun day for my boy's birthday.

We also went through another first this week, his very first keto holiday. For kids, Easter mostly revolves around candy and lots of yummy food for dinner. Obviously both of these are no-no's for Ethan, so my parents got creative with lots of Easter fun involving no yummy treats, and Mike and I planned a keto meal to mimic what we would be eating. We ate ham, asparagus, and mashed potatos. Ethan had Canadian bacon, asparagus and butter.... Kind of close! Ethan's eggs were filled with toys and money, and he didn't realize the difference and had a blast!

Hmmmm, where are they?

Going through the loot

I took a picture of Ethan and Taylor last year on the couch, and had to do the same this year. It's amazing how much they grow in a short year. My babies are growing way too fast:(

They have both gotten so big!

And just because, a pic with mommy:)

It Continues

Just a quick update this morning. Ethan had an ok day yesterday. He had about 6 of these drop seizures around 11 in the morning clumped pretty close together, but nothing more that we physically saw during the day. I kept making the comment that his eyes looked off though, kind of had that glazed over look on his face. Last night as he was settling down for bed he had a ton, just one after another. Once he finally fell asleep, he continued to be very jerky, and let out several loud sighs which always show as seizures when he's hooked up to EEG. Poor boy:( We go in Monday for a blood test to check his keto levels. We have dip sticks that we test his urine with morning and night, but they aren't as accurate as a blood test. We'll see I guess. I just have a feeling the levels are fine, and he's pushing through the diet like he has all the medications.

His brain has continued to improve, despite some seizures returning. He's such a smart little guy, but the constant seizing hasn't let us see it for months now. When he talks on the phone to family they can actually understand all of what he's saying, and he's able to get out complete thoughts. He's back to being totally immersed in the world of make-believe with all his toys. We often see him playing house with his cars. One is Mommy, another is Daddy and a baby. I guess when boys don't have barbies and baby dolls they make due with cars and planes:)

My big boy turns 4 next Wednesday! Another mama of an epilepsy child gave me a recipe for a keto pumpkin cheesecake so we're going to try that out. We haven't even made plans for his birthday yet because we've been so wrapped up in the diet and everything else, but we'll probably do something very small, maybe a keto picnic at a park and just let him run around like crazy. Because excitement and stress trigger seizures he can't really have a "typical" party. He'll even start seizing if extra people are at the house. He'll still have fun though:)

The Beast Shows It's Face

I love being right. I will go to great lengths to prove I'm right even when I'm not, just ask my husband:) But when it comes to Ethan's epilepsy, I want nothing more than to be wrong. I mentioned in my last post that I had that bad feeling that something was coming, it was. We have been getting used to having a non-seizing child at home. He's been such a normal nearly 4 year old. He runs around and plays with his cars all day, and he was even doing yard work with daddy this weekend which was so cute. As he was shoveling piles into the trash with Mike, we were just astounded! There was no way he could have done it just two weeks ago, he would have been way too shaky, and let's face it, probably sleeping on the couch. But then there was yesterday. He was off playing and I watched him kind of fall and then right after he said, "I'm ok". Ethan likes to fake seizures, he doesn't know that he has seizures, he just thinks it's funny to get a rise out of us and see us freak out. I assumed that was what he was doing. I told him to stop it, but it happened again and I realized it was the real thing. I brought him to the couch to sit down and they kept coming. I snapped a video of the very last one in the string to show to Mike just to be sure of what I was seeing. Apparently when you go two weeks without seeing a seizure you second guess yourself!

We were upset, but we never expected seizure freedom from this diet, just hopefully a reduction. Five seizures are bad, but we know how much worse it can be so we just went on with keeping an eye on him. A bit later while we were walking up the stairs, he had another one. He lost muscle tone and his body was thrown backward. Had I not been one step behind him he would have thrown himself backward down half a flight of stairs completely unconscious. I called for Mike and set him down on the stairs. He continued to have about 3 more, each time slamming his head backward into the wall. We were concerned enough by now to put in a call to his neurologist to just let them know what was going on.

He didn't have anymore for a while, but in the evening they started up again, and he started cycling. While we were getting him to drink his cream with dinner (yummy....) every time he would lean in to take a sip he would have one and his body would be thrown back. My poor boy. He got through dinner and had a few more while settling down for the night. Once he was asleep he was a very jerky mess, just like he used to be.... He had about 20 of these (atonic) drop seizures yesterday, and I am very anxiously sitting here waiting to see what happens today. I HATE this feeling!!!

I must mention that yesterday Jet was acting very off. He is the most laid back relaxed dog I have ever seen, and unless the kids are playing with him or he needs to go out and pee he is just passes out on his bed. Yesterday he was pacing back and forth through the living room, and he would come up to me and sit down and look at me. I figured he just needed to go out 12 times in an hour. Mike even said he was acting a big off when he got home. We took him up to bed with us last night because if Ethan did have more I wanted him to be around. He was very uneasy. He was panting alot and couldn't seem to get comfortable. The question is am I reading into things, or did he sense something was off? He and Ethan are very bonded, and love each other very much. I hope it was him realizing something was off. I will be keeping a closer eye on him from now on:)



Way overexposed picture, but how cute is he???




And just because they're so cute!



Signs

The last few days we have been noticing little things. No big all out seizures, but definite seizure activity and signs of seizures. The other night while falling asleep he was jerking. It's normal for people to jerk a little while sleeping (ever woken up to a big jerk?). They're called sleep myoclonics and are totally normal. Ethan has myoclonic seizures among others, and 20 jerks in a period of 3 minutes is not normal. Yesterday he was back to his sleepy self, and took a very long nap in the middle of the day. I watched him fall asleep and once again he was very jerky. I noticed the muscles in his neck jerking as he slept, and that's something that used to happen all the time. Then last night he peed the bed. Ethan does not have accidents, and the only time he pees the bed is either when he's on IV fluids, or is having seizures. When this all started happening back in October he was peeing the bed alot, and it was most likely due to nocturnal seizure activity. I had a very strong feeling yesterday that something bad was going to happen. I still have the feeling. Hopefully I'm wrong this time, but something does feel off.

He is continuing to do very well on the diet. He happily eats the food, and even says the cream is yummy now! He's still hungry during the day, but he's not complaining quite as much. Now just because he is having some seizure activity, that doesn't mean the diet isn't working. In fact, it's working great! He used to have 50 seizures a day, now we're at maybe a couple a week, maybe.... It will be interesting if they hook him up to EEG soon to see how many he's actually having. His mind continues to clear up. We are shocked every day by something new he comes out and says or does. For example, for some reason whenever someone sneezes he says, "Kachoo Daddy" or to whoever sneezes, but yesterday I sneezed and he looked at me and said, "Bless you Mommy". I was so proud of him! It's little stuff like that, but it's like everything is so much clearer to him now. He's using the correct works for certain things now, whereas a couple weeks ago he would search his mind for words and couldn't get anything out. He's back to his crazy high energy self, and is finally off the couch and not sleeping all day. We have actually started to use time out again! (He's back to being naughty again too!) We stopped back in December when any time he would cry or get upset he would constantly seize.

His new partner in crime joins in with him in all his antics. He loves that puppy to death! Whenever he lays down to take a nap, Ethan will gather up all the pillows and blankets and lay them on top of him to tuck him in, too cute! He loves having a dog that actually wants to be with him and play with him, and I think Buddy is happy to not be harassed anymore. He continues to show how ridiculously smart he is. He now knows sit and down just with hand signals, and he will sit before going from one room to the other, or going outside. I haven't started all out training sessons yet, this it just here and there stuff and he picks up new commands so fast. He's already 100% potty trained and will whine at the gate or door when he needs to go out. Such a good boy!

Any pillow becomes his bed.

Ketogenic Diet Week 1/ Meet Jet

This last week has just been crazy. We went in last Sunday to start the diet. We got there around 6 PM, and they got us up to our room. We set around for a while because it was time for shift change and there weren't any set nurses for us yet. Once they did get things rolling they needed to get an IV started in him just in case. So they tried.... Ethan was great, and is almost getting used to being poked which is just so sad. They poked him the first time and wiggled the catheter around trying to get in his veins, but the nurse said it felt like scar tissue was blocking the vein so they needed to try another. So another nurse tried on the other side, same thing.... Yet another nurse (a special one they called down) tried a third time and was finally successful in getting his IV started. Apparently he's been poked so many times recently that his veins are just all blocked up. He toughed that one out better than I could have!

Of course he had McDonald's as his last meal!!!

 Doctors came in and out to chat with us through the evening to give us an idea of what was going to happen. For the first 2 days he wouldn't be able to eat anything, only drink water and 12oz of some very gross smelling formula stuff named KetoCal. Through those next two days he couldn't stomach the stuff, and would just throw up every time he was given it. He also wouldn't drink and started to become dehydrated. What's worse his rash started to spread out of control, and by the second day the neurologist said it was getting so bad it could actually kill him (it was turning into something called Steven Johnson's) so they did decide to pull the new medication.

Yummy.....



Finally on day 3 we were able to start feeding him! His first meal consisted of eggs, bacon, strawberries, butter, and cream. He ate it, and it seemed to go over pretty well. We fed him the rest of the meals for the day and he just wasn't able to keep anything down. He would finish a meal and 5 minutes later it would just come back up. Poor guy, he was miserable. By the end of the day his blood sugar was very low, and they had to give him a little bit of juice to bring it back up. He was totally out of it, and unresponsive. I could literally not get him to smile. They started him on a medication to help with his stomach, and we settled in for the night.

His very first day of keto meals

By day 4 things were starting to turn around. He was feeling better, and meals were staying down. They had told us we would most likely be leaving on Thursday, so I was so excited when the pediatrician came in and told us how great we has been doing, but then she ended with, "BUT the neurologist wants you to stay one more day." I was so upset, but I suppose it was better for him to be there if something went wrong then to be 60 miles away at home.

Finally perking up and his rash getting a little better

Our last day there was pretty uneventful. He continued to keep his food down, and was in much higher spirits. We were able to finally leave in the afternoon, and we were both ready to get out of there! Now what I haven't said yet is up to this point the diet has worked. Ethan stopped having seizures (or signs of sub clinical seizures) by the second day. As we drove home and I gazed in my mirror I didn't see the unconscious seizing boy I saw a week earlier, I saw a happily sleeping little boy who had no seizures before falling asleep, during falling asleep, or while sleeping. His brain and body were both getting the sleep they needed.

 



Since we've been home the diet has been pretty easy to follow. He is happily accepting the foods, but he is pretty hungry all the time and we can't eat in front of him at all. He's constantly asking for sandwiches which are big no no's now. His body will adjust to the smaller portion sizes over time. In the last two days it is almost as though his brain has switched on. He's speaking clearer, and counting some again. Our little boy is coming out of the fog. He isn't shaking nearly as much, and he is no longer napping at all during the day! So far this diet has been all we could have asked for, and more! If only our old neuro would have considered it 4 months ago when I initially asked about it.... So happy we found Children's!

Someone was happy to see brother!

 

 In separate news, we have a new family member. Much earlier than I had planned, Ethan's new puppy Jet has come to live with us! I wanted to wait about another month, but when you find the right dog you have to move, and Jet is perfect. He is a poodle, but don't imagine a show dog in a show clip. Poodles are the second most intelligent breed behind the border collie, but they aren't nearly as energetic and crazy. They also don't shed. Poodles can be exceptionally cute when not clipped in a typical poodle fashion. He has so far been an amazing puppy. He is extremely calm and well behaved. The only 2 accidents he has had have been completely my fault. In just over 24 hours at home he has already mastered "sit". He is so smart and I can't wait to get into full training with him. So far he has had his ears pulled, legs pulled, and been slept on and he could care less. Such a good boy! (We are of course working on being gentle with him) Thank you again to everyone who made it possible for us to get him. He's going places!

Nothing phases him

New buddies