Keto Day is Almost Here!

Tomorrow is our official start day for the ketogenic diet! With less than 24 hours to go, I don't think they can come up with a reason to stop us this time! Ethan has continued to do well, with a few things here and there that are probably little seizures. We noticed he had a little rash for about a week now, and yesterday his entire body broke out. I called his neuro, and the nurse there told us he had to be seen by a pediatrician that night. We got him in and the doctor (who wasn't our regular one) said the rash was probably viral and sent us on our way. We got a call back from his neuro this afternoon and she said there was no way it was viral and she's pretty sure the new med is causing it.... you know, the new one that is stopping almost all his seizures. Yeah, so now they're most likely going to take him off it tomorrow when he gets up to the hospital. Isn't that just great!....

So as a last day of fun before the diet, we took Ethan and Taylor to Chuck-E-Cheese for a day of fun and food he won't be able to eat anymore! It also happens to be epilepsy awareness day today, so Taylor was decked out head to toe in purple for epilepsy! Mike and I wore purple ribbons, and I wore a purple shirt as well. Ethan didn't have any purple and we don't trust him with pinned on ribbons so he was purpleless!

My purple girl!

We had a blast and played all the games. He has been having so few seizures that I almost got a sense of normal while we were there. No one knew looking at him that he was any different (although I wonder what the lady stamping his hand as we went in thought when he couldn't stop shaking to get his hand stamped!) and it almost felt like we were free, if even for a moment. But then I noticed sitting next to me was a ring sling (normal if you have a baby) and then a dose of emergency meds just in case.... never leave home without it! So I guess it was almost normal, but it felt great!

He always loves the monster truck!

So that's where we are for now. We are so excited, but this is all going to be such a change. They wanted us to try to cut out sugar and carbs today and tomorrow to get a little jump start, and I constantly found myself dashing across the room trying to take a sugary drink out of his hand, or remind myself that he can't have this or that. It's ok if he has it now, but once he's home just one sip of soda could totally throw off the diet. NOT going to be easy. I think we're ready though:)

Having so much fun!

Baby girl in the new sling I made this morning

Good News/Bad News

This week has brought so many great things. We got news that Ethan is good to go on the diet, and he is being admitted Sunday to start!!! It's finally spring and the weather is changing. Just being able to get outside with the kids everyday makes things so much better. Taylor is finally big enough to run around with her brother and play. They love it! 

 



On top of the weather change, we had literally not seen a seizure out of Ethan in almost a week. We had once again convinced ourselves that this was it, and this new drug (that had a 1% chance of working) was solving our problems. Ethan slept 2 whole nights in his own bed, and happily out of ours (his bed is next to our bed), and we were even questioning if he even needed to start the diet, but realized he still did because no 3 (ok, almost 4) year old should be taking 15 pills a day, shaking like crazy, and napping 4 hours a day. Yesterday I noticed him being very over emotional, and I told Mike he was going to have a seizure. We both figured it would be one of his smaller regular ones, but the day passed and no seizure. Maybe my mommy sense was off. I should have known better, it never is.... This morning Ethan woke up a little cranky, but acting pretty normal. A little while into the morning he went into a HUGE tonic clonic seizure. He has only had maybe a dozen tonic clonics, but this one was by far the most violent I had ever seen. He started choking, and vomit was flowing from his nose. I gave him his emergency medication Diastat before the 5 minutes I'm supposed to wait because his tonic clonics just haven't been stopping lately. I'm glad I did, and it did stop after about 8 or 9 minutes. No paramedics necessary, thank god! He passed out after, poor boy:( I don't know why we keep assuming he's healed out of no where.

Postictal after his seizure, but snuggling his new Scooby blanket Mommy made!

So that has been the good and bad of the week. We are getting psyched up to start the diet, but it is a HUGE lifestyle change. But what parent wouldn't do whatever they had to do to heal their child? We are once again in let Ethan eat whatever the heck he wants mode, and it is mostly consisting of peanut butter and jelly sandwiches about 4 times a day, salad, and soda which he literally has never drank. We're probably going to take him to McDonalds Sunday for his last meal. Snacks and cake will be interesting for his birthday next month. Speaking of his birthday, as long as medically everything is going pretty well we are probably going to give him his puppy that day! I once again want to thank everyone who has donated! We are very close to our goal!



A few new fluffy little things joined our family today! It is surprisingly legal to keep chickens here in Colorado Springs in your suburban backyard. You can keep up to 10 hens, but no roosters. It might seem strange, but hear me out. Chickens are the ultimate pet. They are quiet and clean. They make your breakfast for you every morning, and you haven't lived until you have eaten free range chicken eggs, they are AMAZING! They eat all your kitchen scraps. Any food you would throw out, throw it to the chickens. They also roam around your yard and eat all those nasty bugs and spiders you don't want getting in your house. I had always said I can't wait to buy a house on land so I could get chickens, then I found out it was legal to have them here! I was psyched. Unfortunately we have a family of foxes that live out behind our house, and they like to eat our chickens. We have had alot of casualties, but we have plans for a new completely predator proof coop that should stop that problem. So here are our new fluffy butts! They aren't sexed, so once we know which are the hens and which are the roosters we will only be left with two or three. Any name suggestions???

He's already in love!

They stay inside under lights until they feather out.

She just wants to squish them!

VERY Cautiously Optomistic

Well we are finally back home from the hospital, at least for now. Ethan is doing ok to good currently. He had 2 pretty bad days when we first got home and I needed to give him Diastat both days. Yesterday he had 14 seizures in 45 minutes, NOT a good way to start the day! But then today happened. He woke up and I waited.... He had one seizure shortly after waking and I figured the flood gates had opened then nothing. He had an appointment with his pediatrician today to get her all caught up and once again he had a seizure while we were there. I was telling her that he would start having a bunch and they probably wouldn't stop but once again, nothing (kids like to make liars of their parents in front of the doctor anyway!). He's had a couple little quirks that might have been a seizure, but nothing more, no clustering at all today! (As I'm writing this he just had a seizure falling asleep.) Ok so 3, maybe 4 for the day. Considering he's been having 30+ a day for some time now this is amazing!!! Most people wouldn't be elated if their child had 4 seizures in a day but I couldn't be happier! I have this tiny glimmer of hope that this new medicine is making a difference. But I'm scared. This isn't the first time a new or changed up medicine has stopped or nearly stopped his seizures, and every time they come back worse than before. But I spoke with another mama with a son with Doose who has been through more than twice the number of drugs Ethan has been through and she said this one actually made a difference for her son. Maybe it's actually working????


All set to leave the hospital!


While his seizures are decreasing for the time being, the side effects are in full force. He walks around shaking all day. It's horrible to see him like that, and I can't imagine how he feels. He gets frustrated with it sometimes, which is just too sad. This morning I was walking him down the stairs (imagine walking a toddler down the stairs, we're that careful, if not more) and he was stumbling every step and he looked at me and said I can't walk. It's so sad. He just wants to be a regular little boy and he's debilitated not only by the seizures, but what we're doing to "treat" them. He's so tired all the time. He sleeps all night (he's been a bit restless lately), gets up in the morning, eats breakfast then I beg him for 15 minutes to just swallow his pills while he throws up a few times, and takes a nap. Wakes up a few hours later to take more pills, eat lunch, play for 15 minutes then take another nap. Then he wakes up plays for a few more minutes, eats dinner, spends another 15 minutes throwing up while we beg him to take his pills and goes back to sleep. He's so tired all the time. He literally passes out anywhere. He'll lay down and start fake snoring and be out 5 minutes later. I have a 13 month old that doesn't sleep this much.

Apparently this was a good napping place.

We're still waiting on the metabolic labs and haven't heard any new news. Every time we talk to the doctors though it's like they're just trying to gimp us along until we can start the diet. They always say we just want to try this until we can start. Now what the heck are we going to do if he's one of the 1 in 3 that this diet doesn't work for? What do we have left to try??? Ahhhh! I can't even think about that right now. It just has to work. We need our Ethan back. He's the shell of the little boy he used to be:(



Just because I'm proud of myself I wanted to show off the skirt I made Taylor! This yarn came to my house as a thrift store sweater. I unraveled it and Ethan helped me dye it, then I crocheted it into a skirt! Mike said it was too short, so I've made it a bit longer. I'm not the crocheter in my family so I was proud of myself:) 



 



And just because they're the cutest kids ever!!!

 





Make That Hospital: Take 8......

So since my last post things have just gotten out of control. Ethan seizures have been increasing more and more. Yesterday he woke up and started seizing right away. We thought we would at least get some relief from the Diastat he had the day before. By 10:00 am we were up around 20 seizures and his neurologist said we had to give him more Diastat to stop the cycle. I gave it to him and it didn't phase him at all. He kept seizing and seizing. Mike called his neuro back and she said he had to go to the ER. So I woke up a sleeping Ethan and a sleeping Taylor, loaded them up and headed up to our local ER. We got there and the seizures did not let up. My mother-in-law came to pick up Taylor, and I set with Ethan as they ordered more and more Valium to try to stop these things. They injected him 3 times with it while we were there and all it did was make him tired and he was still almost constantly seizing. They ordered 2 other powerful drugs to try to stop them and nothing was happening. They finally called an ambulance to transfer him up to his hospital in Denver. Right before we left, he went into a huge tonic seizure. His whole body stiffened like a board and he stopped breathing. I had never seen anything like it, I thought he was going to die! They loaded him on the ambulance and we were on our way back up to Children's. I was so happy to be out of our local ER. They are clueless up there with anything that has to do with his disorder.

Passed out in the ER

The ambulance ride was pretty uneventful. Once we got there he was so drugged out of his mind it was ridiculous. The Children's ER couldn't believe how much they had given him. They said it was enough of just the Valium for an adult male. Ethan is almost 4 and only weighs 38 pounds. Apparently their motto down there is just keep dosing! While we were waiting for a room to open up, the EEG tech came down to hook Ethan up for 24 hour video monitoring. They turned it on and the first thing they said is, "Well, looks like he's got a bunch of drugs in his system"..... Yeah no kidding. By this time he couldn't even sit up on his own. He was just laying there with his eyes open and dilated staring at the ceiling like a zombie.... Oh still seizing. A room finally opened up and by the time we got settled in it was 2 in the morning. Ethan had over 100 seizures this day. Poor guy!

It was a pretty uneventful night. I didn't see him seizing much. I got up a few times in the night to look at the EEG screen and it was showing spikes every few seconds, and full out seizures every few minutes. Ethan however was showing zero outward signs of seizures. When he woke up this morning he was still completely out of it. He still can't walk and can barely sit. The neurology team has been in to talk to me a few times, and it looks like they're trying to push the diet through so we can start sooner. One of the reasons they didn't want us to start it was because they were afraid of the fasting stage.... Well Ethan hasn't eaten for about 26 hours at this point because they didn't want him choking while seizing. He has had zero negative effects from not eating.

Totally out of it, but with his best friends!

He is currently fast asleep. He always has seizures when falling asleep, and they give you a button to push when you see a seizure so they can review it on the EEG. I saw him have 1 seizure and pressed the button, and have not seen another thing out of him since. I just got up to look at the screen, and it tracks the seizures on the side. Even though I have seen 1 seizure, he had 16! So does that mean he's really having 10 or more subclinical seizures for every 1 we see? His video feed is blocking the seizures it recorded even before the ones showing so there are even more I don't see. That is terrifying to me! So here we sit completely unsure of what's coming next. This is all just so frustrating an exhausting!!!!

The seizures in red on the side.

And a big thank you to all those who have donated and spread the word the last couple of days about Ethan's seizure dog fund! I can't believe how generous some people can be, it's just so amazing! We are getting closer to our goal! If we ever get out of the hospital I can start puppy searching:)

Update

We had our appointment with the metabolic doctor yesterday. Apparently our neurologist was over exaggerating a little when she was giving us the vague details of what was going on. One of the tests they were running came back with  a barely high result. The cutoff was .13 and his result was .14. So he was just a smidge above what is considered normal. None the less, they have to run about a gazillion more blood tests to rule out other metabolic things. He had another blood draw and more urine tests, 5 of which were more genetic tests. We are waiting on the result of just one of them, and if it comes out normal he can still do the diet! (Like I said, the neuro scared us for basically no reason....) So the next initiation date for the diet is March 27th, about 2.5 weeks away. If the test comes back normal he is good to go for that date! Now, once again, the problem is these genetic tests take about 4 to 6 weeks to complete. This is a complete DNA sequence so getting this rushed is going to be hard, but they are already on top of trying to push it through so we'll see I guess....

That much Valium would make me pass out too.

It was heartbreaking being in the hospital yesterday. Ethan should have been admitted on Sunday to start the diet. He should have been on day 3, up on the eighth floor just starting to be introduced to foods. He could have even been having some seizure relief by this time. But he wasn't. Instead, it was noon and we were already up above 35 seizures for the day. He was passed out in a wagon while we were eating lunch because the second he would come out of one seizure he would go right back into another. We had to give him Diastat in the doctors office because he wouldn't stop seizing. I hate having to give him that, not to mention the more he has it the more he gets used to it. As if 13 (now 14, added another yesterday....) pills a day wasn't enough for a 3 year old, he's getting dosed with massive amounts of Valium every few days to stop his seizures from spiraling (more?) out of control. Sure, the stuff stops them right now, but what is it doing to his little body? What is the effect of all these drugs going to be in 5 years? Prescription drugs are no more safe than street drugs, they're just more controlled, and half these drugs aren't FDA approved for children anyway. He's regressing more, and it's becoming harder and harder to understand his speech every day. Poor boy:(


An adult would have a hard time with this many pills.

 On a semi-separate note, you may have seen the donate button on the side about getting Ethan a seizure alert dog. Some amazing family members have donated already, no questions asked because they love Ethan and need no explanation! (Thanks Grandma and Grandpa and Uncle Jim and Aunt Nina!!!) I haven't yet explained what a seizure alert dog is, and what my plan is. A seizure alert dog is a service dog specially trained to help people with epilepsy. They may (or may not at first) be able to sense a seizure coming on and will alert that person and their family so they can be in a safe place and prepare for the seizure. They also stay with the person during and after the seizure to provide comfort and stability. They can also be trained to perform certain tasks for the person with epilepsy much as another service dog can do. There are many organizations out there that train these dogs and place them with people, however these dogs cost between 10 and 20 thousand dollars. Even with grants and donations they can be very difficult to obtain, and the waiting list is long.

People who know me know I know dogs..... Very much inside and out. I have been training dogs since I was young, and have even trained a service dog. I have as much, if not more knowledge than many of the people working for the organizations and I have decided to take on the task of training a dog for Ethan. The search for the right puppy will be a long one. The breed doesn't matter so much as the temperament and size of the dog. I know how to temperament test puppies, and can tell you what a 6 or 8 week old puppy will be like as an adult, as well as their trainability and intelligence. Once we think we are at a place where we will be home for a while and Ethan hopefully won't be in and out of the hospital for a while will probably be a good time to bring a puppy in. We will give the dog minimal attention, and have it spend the majority of its time with Ethan in hopes of them forming an extremely close bond and hopefully the dog being so in tune with him that it will be able to detect the chemical changes and alert his seizures. If that doesn't happen even for a few years, the dog will still provide him with a helpful companion that can assist before and after seizures. I will be in charge of training, and am confident that I can get the job done! I am looking for donations to help out with the process. I figure the initial costs of a puppy will be in the $500-$700 range including the puppy, supplies, and a spay or neuter. Thanks to initial donations we are already half way there! This would normally not be a problem for our family, but with the added 5 to 6 hundred dollars a month in medical bills, things like this are less obtainable for this:) Even a small donation of a couple dollars is helpful if you could manage. This dog would just give Ethan back so much of what he has lost.

I must add, we already have a dog, an amazing mutt that Mike and I rescued about 6 years ago. He is an extremely well behaved and lovely dog, but unfortunately he really doesn't care for the kids. He basically just leaves them alone, and won't interact with them at all. He tolerates them, but that's about the end of it. He bonded with the adults in his life early, and only wants attention from us. Plus he's getting older, and is stuck in his ways. We love him anyway though, but he's just not right as a service dog! But the kids still love him!

Our Buddy!

Hospital: Take 7

Yesterday started out typical. Taylor slept super late so I was able to get some work done, and Ethan was hanging out. Once we got further into the day Ethan started having quite a few seizures, and they were weird. I took out the camera because I had been wanted to catch one to show his neurologist. He has been coming more and more aware and getting up and walking around while sometimes saying and doing things. He had 8 or 9 seizures in an hour and a half period and right as I was about to give him Diastat he fell asleep and the seizures stopped. I would rather not pump my child full of Valium so if they stop on their own I'm happy!

Ethan woke up from his nap a good hour or so later. He was acting a little off from then on. Mike got home, Taylor went down for the night, and I started making dinner. I was watching Ethan and something was just off about him. His eyes were slightly dilated, and he was a little sedate. I made the comment to Mike that it almost looked like he was in non-convulsive status. Not listening to that Mommy voice, I went along with what I was doing. About 10 minutes later Ethan started up into a big tonic clonic. I heard Mike say he's having a big one, and when I saw him it took a minute for me to realize this wasn't a normal seizure. We watched him for about 5 minutes and it wasn't stopping or letting up. We gave him the Diastat and it started getting more violent and he started choking on his saliva. After another 5 minutes we called 911. He was having something called status epilepticus which is a life threatening condition that involved a tonic clonic seizure that is prolonged. This can result in brain damage or even death. Unfortunately children with his condition are prone to this and this was the second time this year it has happened. Once the paramedics got there he was starting to come out of it. It had been over 15 minutes by this point. They took him in so he could be watched.

Once we got there he was obviously completely postictal and sleeping. They said there was nothing they could really do but watch him for a while to make sure, as the ER doctor put it, "He doesn't stop breathing because of such a huge dose of Diastat." That was his normal dose but I guess his normal dose is enough to knock an elephant on its butt or something. They called up to his hospital while we were there just to discuss things with that doctor and even though she had never treated him apparently she said she knows all about Ethan, and he's well known up there. You NEVER want your child to be well known at a hospital, especially not one as big as Children's. They deal with the toughest cases in Colorado and the surrounding states. I had assumed his case was middle ground to them, but maybe I was wrong.

Sleeping with his Mario!

They let us go a couple hours later even though he started vomiting right when we were being discharged. We got him home, gave him a bath, and got him down to sleep. Of course I didn't sleep because I had to check on him every 5 minutes to make sure he was breathing! He had one other seizure through the night that I saw, but has been acting fine this morning. He was up nice and early at 6 am on a Saturday morning, that's my boy! So that was our night, and our 7th trip to the hospital in 5 months. Ethan continues to be so strong. It doesn't even phase him even though he's getting poked 4 times a week for blood draws and IV's. I wish I could be as brave as him:)

My boy, flying a kite for the first time!

Change of Plans

So it seems things have changed. We were called in last minute earlier this week because they needed another blood test before he started the diet. We started out being angry that they ordered something so last minute, and the results not coming in extremely early would mean pushing his diet back almost a month. Our anger soon turned to worry because we were told they were looking for something extremely rare that "would lead to a different diagnosis".  Well with lots of phone calls and pressure we did get that result extremely early, and it's not what we wanted. It came out abnormal. They aren't telling us exactly what is wrong. All we know is it has to do with carnitine and long chain fatty acids and we have an appointment with a metabolic doctor next Tuesday. The big downside to this is the diet is now out of the question. He has a problem metabolizing fats, and the diet is made up of mainly fats, the two don't mix! So now we're waiting....

It seems very odd to me that he would have an extremely rare seizure disorder along with an extremely rare metabolic disorder. They HAVE to be connected some way. I'm very nervous about this appointment. I'm terrified I'm going to get some extremely bad news. All I know is I'm sick of seizures. My life revolves around seizures and seizure medication. I was so ready to start this diet and hopefully get rid of the seizures. Now we have a whole other thing to deal with. I was so ready to be done with looking in my rear-view mirror and seeing a seizing child in my back seat. No, he's not gazing off, he's completely unconscious and seizing.

Also, because I have become terrible with communication since this all started, I wanted to thank Great Grandma and Grandpa so much for the cards and the movie today! Ethan LOVES getting mail, and he was so happy to see Elmo today! We have been watching it all evening. Thanks!!!

He loves Elmo!