*This is the update from Jonah's fundraiser. http://gfwd.at/1GpPneY

Jonah's 24hr EEG brought both good and bad news.

The good news is that only 3 seizures were picked up which is significantly better than back in June when it was 100's. That is even less than last January. In my opinion that is the ketogenic diet and IVIG (IVIG is what the insurance refuses to pay). Although he still has "slowing" in the background of his EEG monitoring which is not good, it has cleared up a lot since his last EEG. 

The bad news is that he is still having daily seizures. At least one tonic seizure which is a stiffening where his head is lifted some off the bed after he falls asleep. He will have a tonic clonic (grand mal) seizure  about once every 1.5 weeks. Praise God they are only at night. He has some other types once in awhile if he's upset or something but for the most part his daytime seizures are under control and hopefully will stay that way. 

His doctor has taken off the MAE diagnosis because at this point she is uncertain if his diagnosis falls into the MAE or LGS category (google them, you will get a ton of info)  Both are very similar forms of rare intractable epilepsy. Unfortunately, the one she's thinking he might have because of the tonics is LGS which is the worse of the two. LGS is usually not outgrown and can cause development delays where as MAE has an ok chance of being outgrown around 8-9. Both are suppose to be super responders to diet treatment so we will be trying to max that out before we go on to other medications. 

Thanks again for lifting us up in prayer and generously donating. Remember every donation will be equally matched up to $10,000. Money that is given personally or through Paypal will also be included in the match. 

So much has happened since my last post. I really don't know where to start. I think I'm going to try to summarize.

Jonah's doctor gave us a plan:
1. Increase Depakote to what is was in the hospital back in June. If that doesn't do anything then Depakote goes out the door. 

2. Maximize the diet. Bump up to a 2.5:1 which again is noticeably more fat and less carbs. If that does nothing, scale the ratio back down.

3. Add new medication from a different class of seizure meds. keep in mind though that once someone has failed 3 anti seizure meds the likely of one working is very slim. I really would not like to have to get to this point because hearing her list off the side effects were not fun. Some of the side effects she wrote down were sleepiness, unsteadiness, drooling(yes she actually wrote that). He would need to have an EKG first because these meds are alot stronger or could be hard on his heart or something.

4. Also the plan is to give IVIG every three weeks instead or every 2 weeks to see if on that third week makes any difference in seizure control. If not then after a few times at 3 weeks we would go down to 4 weeks and so on.

No, we have not heard back from Justin's work yet to see if they will make our insurance company pay for the IVIG. Our doctor is confident that she will be able to get it to go through with a peer to peer with the insurance company. So that was nice to hear.

She also mentioned that since he has so many tonic seizures (that's what he has most nights after falling asleep) that it can be a indicator that he has a more difficult case of Doose/MAE. You can imagine that put knots in my stomach right away.

As we were closing our meeting with his doctor Justin asked about medical marijuana or CBD treatments for epilepsy. She mentioned that they will be doing a CBD study at the Mayo I believe in early 2015. She said that Jonah would  meet the criteria for the study so she marked us down. We are not officially on it yet but we are on the list if that makes since. She also mentioned that for the study meds can't have changed for 30 days prior to the start of the study. So I don't know if that would change anything as far as, the plan. She also mentioned that when CBD becomes available next June/July it will be very expensive like $700-800 a month and insurance probably won't pay for it. So getting into the study would mean free for us for awhile even after the study.

I feel like a shlub for asking people to donate money to us. I am also very thankful for every dollar. I lay awake at night thinking about the cost of everything for Jonah. $15,000 sitting in collections from IVIG so far. $80 a month for his medications, $600 for a nighttime seizure monitor that will tell us if he is having a seizure at night, $100 to get to the Mayo a month, $317 co-pay for each hospital stay which the next one is coming up November 20, a ton of money for his dental bills which is due to the seizure medication effecting his gums/teeth and it seems like the list goes on. It just keeps turning and turning in my head. So, thank you for your donations, thy will go 100% to help my boy fight this hard to treat epilepsy.

I'm trying to figure out a fundraiser ideas or a silent action or something but I don't even know where to start.

*UPDATE: We are in phase 2 of the Depakote Carnitine increase. (sorry, I forgot to mention that his doctor increased his carnitine supplement my a 1/4 of a teaspoon, which is actually a lot) he actually has been having MORE daily seizures. I hate daytime seizures. Also, he has broken out in hives. I think the hives are from the increased carnitine but really I don't know they could be from the increased Depakote. I have no idea why the increased seizures. Justin thinks it's the Depakote. We did call the on call dr but them were no help. We will call his doctor on Monday. For instance today he had has at least 3 different seizures not including the regular ones he has while he's sleeping. If you add those it's at least 5 today. That is 5 too many.

Thanks again for all or your support. Prayers, funds, pizza...everything.

In case anyone would like it here is our donation page link: 

https://www.giveforward.com/fundraiser/yzb6/jonah-s-myoclonic-astatic-epilepsy-fundraiser?utm_campaign=update&utm_medium=email&utm_source=giveforward

We are back down at the Mayo and hospital again to meet with his doctors and so he can get his infusion.

Jonah has been doing fairly well. He's not seizure free but with Doose Syndrome his seizure control is great compared to what it could be and has been been. 

He still continues to have grand mal (tonic clonic) seizures in his sleep. He actually just had one this morning. :( He also is still having tonics nearly every time he falls asleep. These last couple weeks he has also had increased daytime activity. 

Jonah has been on the increased ratio now for over a month. We really haven't seen a lot of difference in seizure control with the increased ratio. We'll see what his doctor has to say about moving forward. 

If it is on your heart to help monetarily we have started an online fundraiser for Jonah to help cover his past and ongoing medical bills, medications, special equipment, dental work due to medications... 

http://www.giveforward.com/fundraisers?query=Jonah+Kittelson-burke or we can except donations through PayPal on this blog. He money goes directly into an account set up for Jonah and the expenses for his care.

As I was saying in my last post, it has been awhile since my update on Jonah. At one of the Mayo visits we met with Jonah's dietitian and neurologist. Like I said before they increased the fat to carb ratio to see if we could eliminate the nightly tonics he was having after falling asleep and the occasional tonic clonics he was having in the early morning in his sleep. I do believe that the increase has helped but not eliminated them. In the last month he has had 2 tonic clonic(grand mal) seizures in his sleep which isn't too bad but I would like him not have any. Actually, since I started writing this update a few day ago, Jonah had one drop in the bathtub followed by an absent and then 2 days later he had an absence while sitting on the couch. Hopefully those were just breakthrough seizures. IVIG is scheduled again for this Saturday.

As far as our insurance paying for IVIG we are still in that battle. They denied the Mayo's claim to which we were really hoping they wouldn't. I'm starting to brainstorm fundraiser ideas. If we had to pay out if pocket for Jonah's treatment plus all of his other bills the cost would be over $37000 a year.

Jonah

I know it's been awhile, sorry. Time has not been on my side.

I posted last a little over a month ago. Since then Jonah has been down to the Mayo twice and we have increased his ratio from 1.75:1 to 2:1. That doesn't seem like much but you can tell. He gets quite a bit less fruit and more heavy whipping cream. He seems to be tolerating it fine though. Thanks to Barb who is on top of making sure Jonah has a great variety of meals and makes them every week. Barb is always on the ketocaluculator making new meals or switching things up to make the meals more attractive to him. Thanks also to John and Susan who have bought themselves a scale and taken on the task to help with Jonah's food preparation. Thank you to my mother, Kathy who continues to come over 3 times every week to help out. Thank you to Margie and all who decorate brown lunch bags that Jonah's meals come in. Thank you Audra and Audra's whole Church body who continue to lift Jonah up in prayer and send words of encouragement. Thank you Katie who also is a prayer worrier for our Jonah and continues to send texts and words of encouragement to Jonah. Thank you to Bill and Kathy who barley know Jonah yet have keep donating financialy to Jonah's rising medical cost through Pay Pal which now have accumulated over 15K. I know I am missing so many people but thank you to every single one of you praying for Jonah and coming along side this journey of having a child with hard to treat, multiple types of seizures, aka Doose Syndrome. 

My firstborn is 16, Crazy

It seems like I have been so busy lately and time is just flying by that I haven't had a lot of time to sit and think about how I have been a mom now for almost 17 years. Wow! That's just crazy. 

I am so thankful that God have me Tyler for my firstborn. He is one amazing young adult. A true leader. 

I love you Tyler! I hope you had a great day.

Happy Birthday, Shane! 

13 years ago today, well on October 2, our second child took his first breath at Methodist Hospital in Saint Louis Park at 12:51am. Although we didn't know his name yet we were extremely happy that God gave him to us.  

What a joy it has been to watch Shane grow into a now teenager. 

Shane celebrated the day with grandpa Dan coming out with some birthday gifts. Then, grandma taking him to lunch. He got the day off of school to which he spent the rest of the day playing a new birthday game, Destiny.