Diagnosis

MAE or Doose Syndrome. That is the definite diagnosis given to Jonah. We had always thought that since his second opinion, but wanted a definite diagnosis from an expert in epilepsy/Doose syndrome/ketogentic diet. So, after researching doctors, we came across ours. Here she is:

http://m.youtube.com/watch?v=j828eDvAPuY

http://m.youtube.com/watch?v=cdBqYbmxt3o

After the 24hour EEG at the beginning of the ketogentic initiation we were told. 

Update

The point of this diet is to produce ketones. His ketones were high in the hospital and so they lowered the ratio from 2:1 to 1:1. That was 4 days ago. His ketones have still been in the moderate range which is good. That is until this morning. When I checked he was at a trace to small for ketones. Throughout the day and this evening he has been at about the same.

I don't know yet if the dietitian will need to increase the ratio right away or wait and see if it changes. It's really nice being on the lower ratio but we will do whatever. 

Also, I will be talking to his dietitian tomorrow because Jonah is very hungry. I knew he would be hungry but I don't think he needs to be this hungry. He asks for food all the time. He cries for food. He asks for food that he never even used to like. For example, he used to spit out macadamia nuts. Well, on this diet he is allowed one free nut, yes only one. Anyway, when I gave him one he suddenly likes them and cried because I wouldn't give him 2 or 3. I hate it. I hate not being able to give him food when he wants it. It is so hard to watch your child cry because he's hungry and not be able to do anything about it. Hopefully tomorrow we will be able to raise his calories. Worse than that though is to see him have seizures like a tonic clonic (grand mal) or to watch him just fall over out of nowhere and hurt himself. His doctor said herself, this is the BEST treatment for what he has.

This is a change for all of us. We have a lock on the fridge and freezer now. The kids know they can't eat food in front of him. He just doesn't get it. Yesterday he saw Subway on the table and started looking around crying and asking where his was. He jut doesn't get it. He's only 3. 

Sunday morning in his sleep at 6:15AM he had a tonic clonic seizure. A short one but still it has been over 2 months since he's had one of those.

I will end on a good note, he had ZERO drops or any noticeable seizures today!! 

Please keep Jonah and our family in your prayers. We could really use them.

Thanks.

Going home

I'm exhausted tonight. Today has been filled with a lot of highs and lows...

Highs:

*Coming home. Seeing the other kids!

*Jonah ate all of his breakfast, dinner and snack.

*The new incentive donut jar is working great.

*Jonah put enough "donuts" in the reward jar to go on a tractor ride with dad.  

Lows:

*Throwing up his lunch from the mayo.

*Having a couple drops

*Sneaking orange juice a Huge set back. Only a tablespoon can take him out of ketosis. 

 

Day #3 of the diet introduction

Today started out pretty good. He ate all of his breakfast.

 We tried to get him to swallow one if his pills vs crushing it and mixing it in a syringe with soda. That didn't go do well. After almost an hour of trying to convince him to swallow it, yet another meal had already come. So, we crushed the pill and put it in the syringe. Bottom line is that made him throw up. 

The his doctor came in and we ended up getting rid of one snack and lowering his ratio to 1:1 because we know he is really good at producing ketones. Good news! 

He ate okay at lunch. He had all of his ham and crackers but not what he really need to, the fat part of it. 

Between lunch and dinner jonah was GREAT! He was a really active happy playful little normal 3 year old.

For dinner he did great, ate everything thanks to the awesome kids coach or whatever you call them team! They set him up with a new reward system that he gets to put a donut in the bucket every time he takes a bite and then when it folks to a cartoon checkpoint, he gets a reward. It took a good half hour, but praise God he ate his food!

Cream is one of the hardest parts to give him. I'm hoping that with the outpatient dietitian we can move away from the cream some. 

We get to go home tomorrow! We are thrilled yet a little nervous. It's going to be really hard until we all get into a routine and what not. 

KB's

Day #2

Eating is not going go great for Jonah. Breakfast and snack both ended in him having a fit and what seems like seizure activity(not a full blown tonic clonic but still..). Lunch wasn't much better, he are about 50% but still was not enough. This is a sample of a dinner:

Thank you so much to all if you who have stepped up to help us yet once again. Someday, I hope to pay you all back. 

He was able to get the leads and cap off him from the 24 hour EEG. We did get the results back from that right away but that is going to have to be a post of its own. I'm very tired. 

Praises that Jonah was able to run around without being connected to a bunch of wires. They have 2 great children's play areas. Today they had a fall party that Jonah was able to go to. At the party he got to paint a pumpkin, go gourd bowling, fishing for prizes plus more. 

Also, I'm so thankful that Jonah are his entire snack tonight of cream and a bite of apple sauce! Oh and he seems to be great at making ketones so that is another positive. So far we are able to stay at a 2:1 ratio with the diet. That is really good news. 

Good night,

KB's

Day #1

Well... It's been a long day. They are great here at the Mayo. Very friendly and accommodating. 

The day started out not so great with the fitting of the EEG cap. He did pretty good with that. After we were settled back in our room he was not happy. He wanted to go out if the room, get the hat off his head, it took a lot to get him to eat his first keto meal. He was sad and cried a few times. Also, he has had a lot more seizure activity because he's in an environment that he his not liking. 

The second half of the day went a bit more smoothly. He ended up falling asleep. After his nap he was pretty happy and ate his snack great! I am so surprised how small the portions are and how much butter I had to spread on 3 crackers. 

Thanks everyone for your support!

Here we go...Jonah is to be admitted on Tuesday, October 22nd, 2013 and our lives will be forever changed once again, Ketogenic Prescribed Diet

So here is the deal for those of you who don't know what this whole thing is about.

Jonah will be starting the Pediatric Neurologist prescribed diet which is called the Ketogenic Diet on Tuesday. (You can find out more on the diet here.)  There is a wealth of info on the web about this diet and we are very happy and nervous to start this potential game changer for Jonah.

The doctors up until this point have attempted to give us an idea that our Jonah will more than likely need to be on medication for his entire life due to the type of Epilepsy he has. (MAE as it is commonly referred to, or Doose Syndrome)  We have been looking all over the place for a doctor that would be able to first exhaust the resources available to her/him with finding out as much as we can find out about what Jonah has and what he does NOT have and then continue on with a potential cure for his condition.  That is where this gets tricky, most doctors have come to the point that once a child has started to have multiple seizure types such as our Jonah they are convinced that the best course of action is heavily medicate them, which obviously will alter their quality of life.  That is why I started to do my own research into what all of the options are, and I mean all of the options.  Surgery, prescribed diet, multiple medications, praying, overall diet changes, and doing nothing were really what I came up with.  So I was intrigued by this doctor out of the Mayo in Rochester that was really on my train of thought when it comes to treating root cause and potentially curing the seizures all together.

That is when after visiting our second opinion doctor out of the St. Paul area we were pressed to come up with someone that might be able to assist us with putting our best foot forward while attempting to give Jonah the best chance at beating this thing.

So it comes down to this: medicate him with more pharmaceutical drugs and hope that they will work, and more than likely continue to treat symptoms of the seizures and deal with the many side effects that they bring, or to go straight to the point where most families that are in our situation find themselves inevitably anyway after attempting to treat their child with medication over the course of years with failed results, only potentially giving the condition time to destroy pathways in the brain that might have otherwise have been spared if the diet had been started sooner.  So for us we are thinking of it this way, it is better to start off with the diet as even if it doesn't work at least we will know that and at least we attempted to go the path that could have resulted in Jonah being seizure and medication free after the diet has run its course.  So the chance of Jonah being seizure and medication free is the best option for him right now and the only known method for that to happen is this Ketogenic Diet and it can only be administered via a Dietitian Team and a supporting Pediatric Neurologist, to which we have found both to be very responsive to our overall plan so far.

We are not a neurologist and don't attempt to understand all of the stuff going on, however we are Jonah's parents, and we think if we get him off medication and on the diet and he is able to be seizure free for 1.5 to 2 years his brain is a powerful thing and hopefully will be able to heal itself along with God of course having his hand in all of this Jonah might be able to look back at this time and thank us for trusting God.

I want to thank the Irvine family for sharing their story as that is what lead us to Dr. Wirrell.  (Please take a minute to read about them here.)  Their story was so similar to ours we couldn't ignore it, and bring it into our options list.

Below you will find out some stuff that the doctors and the dietician team have come up with that we will more than likely need over the course of this at least 3 to 4 month trail that will hopefully turn into his long term treatment.

The cost on the right is only my guess, the reason I am putting this list out here is I know that many have asked how exactly they can help, well this is really a tangible way that folks can help with what we are going through, not everyone wants to or can watch our children as a way to assist.  (Not minimizing folks that have watched our kids, cause that is awesome)

Scale for weighing food (must be gram scale with 1/10 accuracy): $40
Small plastic storage containers for small amounts of food: $20-$30
Screw-top plastic beverage bottles for liquids: $
Small rubber spacela's to scrape every morsel of food: $
Measuring Cup/s marked with milimeters (small) $
Bendable Plastic Straws: $
Small oven safe dishes for microwaving: $
Small cooler/Lunch type insulated bags for traveling with meals: $
Tooth picks for eating small pieces of food: $
Blender: -Item already
Milk Shake Wand or Small hand beater to whip cream: $
Tape for making labels on food containers: $
Small Skillet (Stainless Steel)
Bathroom Digital Scale for weighing your child: $
Urine Ketone Strips (available at pharmacy): $
SnoCone Maker: $
Coconut Oil: $
Toothpaste (Tom's of Maine): $4/$5
Fuel Costs to the Mayo over the course of this: $50 per trip, we'll probably need to visit every couple months 

Medication/supplements:$

Special foods: gift card to grocery store

Small toys or books that can be given to Jonah for incentives when he eats his whole meals- dollar store, goodwill, recycled toys

Thank you for coming along side us in our journey to do everything we can do to help Jonah. 

We will be using this blog as a tool to keep you all informed about how things are going for Jonah. 

We want Jonah to stop having "drops" that can lead to this:

Happy Birthday Tyler! 15 years old today...

It has proven to be a good day for Tyler.

Enter the Kittelson-Burke house at approximately 8:15 when Tyler decided to roll out of bed and shower and get ready for the day.  He proceeded to the front door of our house to put his shoes on when I stopped him and said, "Happy Birthday", to which he replied, thanks, I guess, then I said he might want to wait to put those shoes on...

I grabbed 2 boxes of shoes from my bedroom and brought them both out and instructed him to pick one, and the choice couldn't be based on price, I was hiding the price tag for each pair, he had to judge for himself without my influence which pair he liked best or didn't like for that matter and go with what he liked.  Tyler ended up choosing the lower cost shoes and all was right in the world, for just a second.

I then showed him the cost of both pairs and then offered him one last out, he could return both pairs and get a fraction of the cost of the lower priced pair, however he declined to take me up on that offer.

Then I grabbed some more stuff from my bedroom and he was happy to see me bring out some clothes.  2 pair of Urban Jeans; 2 t-shirts (1 Coca-Cola 1 Pepsi Cola), and finally a hoodie that I thought he might like, ZooYork.

Anyway I let him know that he needed to pick his favorite pair of jeans cause we needed to return the other pair, to which he quickly quipped that he would spring the $25 for the pair that I was planning on returning, and so his smooth and slick approach proved well for him.

We went to church (on-time), he didn't complain much and we each took part in communion and then we said our final good-bye's to a couple that we have known for a long time, Jesse and Andrea were honored on stage and were game enough to even stand as if they just married to hug and greet those that just wanted to wish them well.  I took the opportunity to do just that, now normally I don't do hugs, but this such occasion merited such an action, and action that carries with it a deeper meaning, especially coming from me, a hug from meaning that I wish them well, that I wish them continued focus on God and to be that pilliar to which they were to so many at Quarry including me.  And so I hugged each of them with baby Ethan in arm to let them know that they are simply going for now to be obiedent to God's calling, it isn't for me to understand but it is for me to also respect their obiedience.

Obedience is a peculiar notion when it comes to young men.  My Tyler is generally a good kid, and doesn't push the limits too much, but when he does he knows that he needs to rein it in and simply say that he is sorry, no matter how backhanded his sorry is, he does it and attempts to move on.  Tyler is an intelligent, strong willed, and thoughtful young man when he wants to be, he just doesn't want to be all the time I have found out.  There are many things he can do better than me at this point, I'll just name a few...

~Run faster than me
~Play Call of Duty better than me
~Play Halo better than me
~Write better than me
~Play Pokemon better than me

Before I go too far, I'll leave it at that, so far I am taller than him and I make more money than him, for now anyway.

It was many years ago that I found myself in a very different place starring down the idea that I was to be a dad!  I was 17 years old and had to really come to terms with a many great things.  I could go down a path talking about how my dad wasn't there and how he was an alcoholic, but all in all, I have a dad whom I believe cares about me, however he just doesn't know how to show it.  And so I am learning everyday how to be a better dad for my kids, not just for Tyler but for all of them.  To be able to just say those 3 words is something that has eluded my lips since Tyler was about 8 years old, and so today as I took him to lunch, just me and him sitting at Quizno's eating a meal together, I couldn't muster up the words and say them.  My intention is that I live out my love for my kids in everything I do.  I know there are many quotes about intentions, I commit to this, to say I love you to my kids and wife more.

While having 6 kids wasn't my idea, I sure am glad we did, I love each one of them so much.

I'll end this post with something that have been looking forward to...

To Tyler:

I wish you the best of luck.  I hopefully have given and will continue to give you a good example of what having a relationship with Jesus is like.  You are growing up so fast, don't take it faster than you need to while you are still young.  Wait to get a job, be a kid.  Wait to get a car, learn to use ours.  Wait on God for "the one", God will give you "the one" when you're ready.  Focus on school and do your best, that is all anyone can ever ask, that is what I am asking, just do your best.  You are a natural leader, lead well.  Remember what really matters, not the stuff you get, it's the relationships that you will look back on and say man I wish...  Take time to invest in others and to let others invest in you.  You don't always have to be "doing something", soon you too will be asking where has the time gone.  Enjoy your family.  We enjoy you.  I love you Tyler, I hope you've had a birthday to remember.

Dad.

Results

We have access to most of the results back from the Mayo.

 I haven't had a chance to go through everything but it seems like most of the results came back normal.  He does have a carnotine deficiency which he will need supplements for. You need carnotine to produce good ketones on the diet he will be starting later this month.

I've heard that carnotine supplements can cause an increase in seizures, please come along side us in praying that doesn't happen with Jonah.

He has some sort of lesion on his brain I guess. I don't think it is a big deal though because they didn't call us about it or anything. We read about it on his online charts.

Birthday Boy! (One Down, One to Go)

12 years old and STILL smiles for pictures. (I'm lucky)

Today, my second-born son, Shane, proudly accepted that he is now one, yes one year away from teen-hood.

His long-awaited big day turned out to be a blast!

In the midst of receiving numerous gifts, including a newly released hovering Air Hogs ATMOSPHERE, an ample supply of duck-tape, and tons of, yes you guessed it, birthday money.

I think it is safe to say that this happy-camper can drift off to sleep tonight assured that today has turned out to be a birthday that will remain unparalleled by any other for years to come.
 
We love you Shane, have a good one!

-Kristi




written and edited by, Tyler Kittelson-Burke