It is hard to believe that a week has gone by since our appointment at John’s Hopkins. A lot has happened in the last week.

We took Gabriel to the hospital today for a follow up EEG. The Dr. at Johns Hopkins recommended this to compare to the EEG from May to see how the diet has worked over 6 months. It will also give us a baseline before we start pulling meds. He had 2 long seizures in his sleep. Not glad that he had them but we have been trying to describe these to our doctor here in Kansas City since July. So we are glad that there is an EEG that caught them, so he can see the brain activity during them.

We are continuing to explore all possible resources for Gabriel. He is having lots of fun at therapy. It is great to see him practicing the physical skills of balancing, pushing, pulling, walking up stairs and having success! Each week we get good tips for things to try at home. I hope to get some pictures to share on the blog soon.

We are working with our local school district as well. We did a baseline evaluation in April, in which he blew through all the developmental areas with ease. At the time they seemed confused as to why we were there. When he went last week he passed 4 of the 10 areas. They recommended further evaluation in 6 areas including speech articulation, attention, fine and large motor and a couple others. While none of this surprised us, it was still disappointing to have a clear comparison that showed his slowed development. Thankfully he is still doing well in things like letter recognition and matching, cause and effect. I can also tell he continues to learn new words and basic science concepts. So while he is not where we want him to be, he is continuing to develop in some areas and we have plans in place to help where he is not.

I found a devotional book on amazon a few weeks ago that has been so helpful. It is called A Different Dream for My Child.  The title grabbed me right away.  I liked it more than the other phrase “a new normal” that i hear and use a lot for our lives. A reminder that I can still dream for Gabriel’s future, while accepting the new normal has brought a nice balance to me internal dialogue.  The book contains stories from other families wrestling with a variety of diagnosis, along with thoughtful questions to process and scripture.  Each time I read it I feel a little calmer, a little less alone and a little more hopeful.  I am attaching a link in case anyone reading this would like such a resource for themself or someone they care about. They also have one for special needs families.

http://www.amazon.com/Different-Dream-Child-Meditations-Chronically/dp/1572933070/ref=sr_1_1?ie=UTF8&qid=1353506718&sr=8-1&keywords=a+different+dream+for+my+child

So while my dream for Gabriel always contained things like drivers licenses, college, marriage and career….now it is simplified…….safety, happiness, love, self confidence.  The two dreams are not that different I was just filling in the blanks with what I thought would be a good life.  While I am not giving up on any of the things in the first list, I am not focusing on them as whether or not we have given him the tools for a successful life.

Johns Hopkins Trip.

To get right to the point it was as great trip and the Doctor was awesome.  After having a doctor that is a bit overwhelmed and doesn’t listen all that well here in KC, this experience was a polar opposite.  I’ll say more about that later.  The long and the short of it is, He is not 100 percent positive that Gabriel has Doose.  He basically feels like he has some of the elements of Doose, but also some of Dravet’s syndrome which is a more severe syndrome with a bit more disappointing potential outcomes.  But there are also some things that make it unlikely to be Dravets, for example, he was a little surprised that when Gabriel has a fever he doesn’t have seizures.  Dravet kids have tons of seizures with fever or even with excess heat.  So basically he just said that its hard to tell exactly what it is.  He said that sometimes younger kids with Doose don’t respond as well to the diet and it can just take some time to kick in.  We weren’t really surprised by any of this.  We’ve been bracing ourselves for the reality that we might not get to seizure freedom like we had hoped when all this started, and particularly when we started the diet.  He confirmed that we have been doing everything we can to maximize the benefit of the diet.

He recommended several things.  One, he suggested that we try some intermittent fasting particularly when the seizures are really bad.  He said that in his experience this has had some good effect with some of these kinds of cases.  Second, he suggests that we begin trying to wean medications.  This is for two reasons.  One, he felt like G seemed overmedicated and that some of his developmental delay issues are likely related to the amount of drugs he has on board.  So he suggested that we start weaning the most “potent” drug he is on.

This will tell us one of two things.  If weaning the drug had little to no effect on the number of seizures (i.e. they stay the same in number and intensity), then we know that the diet is doing the heavy lifting on the seizure reductions we have seen so far (about 50-75 percent lower than pre-diet).  If his seizures spike, we get a clue that the diet may not be doing as much as we had hoped, and that the drugs are the thing helping the most.

All in all fewer drugs is better as long as we don’t see a spike in seizures.  So that’s what we are going to try next. It will take 6 weeks if everything goes perfectly to wean the first drug.  Then we would do a second, and a third.  Given our track record were not really expecting things to go perfectly so it will likely take longer than this.  If the seizures spike we may stop or reverse the drug wean and try a different one.  So that’s what we know for now  and that is where we are headed.  Oh and he wants us to get another EEG to see how the diet has  effected the EEG results since we haven’t had one since may.

As for the visit itself.  There couldn’t be a more stark contrast from our current doctors.  Johns Hopkins is world class, everything was smooth and well organized.  Instead of having a nurse call you in and weigh you  and then put you into a room to wait for 20 minutes, the Doctors themselves come out and call for the patients and stay with them the entire 1 hour appointment.  He asked a ton of good questions, listened to us, etc.  Also the dietitian was in the room the whole time and you could tell he respected her and turned to her for information that he didn’t have etc.  Finally when we left he made sure we knew we could contact him by email (yes email) if we had any further concerns or questions etc.

I wouldn’t say we got great news, and we weren’t expecting to have some sort of miraculous game changing answer.  We do feel good to have a solid plan with clear next steps – something we have had on hold for a while, but mostly we recognize what a difference good communication and bedside manner mean to dealing with Gabriel’s illness.

Thanks for all your support and continue to pray for our little man on the Journey.  In many ways we have become resigned to the fact that this is and always has been entirely in God’s hands.

Chuck

After almost 3 months of waiting, our trip to Baltimore and John’s Hopkins is right around the corner. We are crossing all of our t’s and dotting our i’s.  All of Gabriel’s records from our hospital have been sent and received  (I made sure they were received!). We are finishing up filing out a great questionnaire the clinic sent us and complying a list of questions. From what I understand we will be meeting with the doctor and talking through what has been done so far and seeing if he has other suggestions/ideas. We are seeing Dr. Eric Kosseff–one of the doctors, who literally helped write THE Book on Ketogenic Diet for treatment of epilepsy.

http://www.amazon.com/Ketogenic-Diets-Treatments-Epilepsy-Disorders/dp/1936303108/ref=sr_1_1?ie=UTF8&qid=1352434899&sr=8-1&keywords=ketogenic+diet

So far we have been very happy with the interactions with Dr. Kosseff, as well as, the clinic staff.  He has answered several emails even before we had an official appointment. I truly don’t know what to expect.  I don’t necessarily feel like we are going to get any clear answers but I am thankful to have an extra set of highly trained eyes on Gabriel’s case.  Since his specialty is the diet, I am expecting suggestions on tweaking things in that area not necessarily drug changes or ideas.  Could be interesting since getting Gabriel to eat anything but pizza and a few snacks has been pretty much impossible lately….well not impossible…but 2 hours to eat a plate of eggs that are the size of equivalent of 6 adults bites. UGH!  🙂

I wanted to share a website that has been invaluable to us….it is because of this family and their commitment to help other families, that we have the ketogetic diet.

http://www.charliefoundation.org/

If you get a minute click on the link and check out the dateline video (it is the 2nd video in the window). It is a great story about the diet how it helps and shows what seizures look like.

I am getting excited to have the trip over with more than anything.  I am literally praying that God will help me slowly but surely get all the details of the trip sorted out.  Thinking through getting all the food ready and prepped for flying, plus making sure the food and the all the medications make it through screenings  are keeping me up at night!  I just keep picturing Chuck and I looking like crazy people in a movie scene.. with one of us plowing through the airport with a stroller loaded up with a helmeted 3 year old and all of our random stuff, while the other one tries to carry the giant carseat. LOL! I am literally laughing thinking about. I wish we were getting to go on vacation instead! but truly grateful to have this opportunity.

SO praying people…here are our prayer requests:

1.  For organized packing  and a safe, easy and calm travels

2.  For clear communication with the doctor. Pray that we will be heard and understand the answers as well as the why behind the answers.

3. For a complete and total end to Gabriel’s seizures.

Gabriel has had 2 really and I mean really good days! He had his first Occupational and Physical Therapy appointments on Friday (which were in and of themselves wonderful…but I will save that for another day). I think he said more words in his 1 hour occupational therapy session than he has said all year at preschool. Chuck and I kept looking at each in shock over how much the kid was yammering on about EVERYTHING….well except was he was supposed to be focusing on. We don’t think he has any seizures in 2 days (a couple possible episode but not clear)! He has been more active and daring….always a good sign. At the park today he would lay on his belly on the swing and push off with his feet then swing. Believe it or not this takes a lot of balance and strength, so it is not something we have seen in a long time. So nice to have some good things after almost a week of tough times.

I am continually amazed at how exhausted I feel all the time. Even when I get a good break and feel rested, there are more pizzas to make, more meds to prepare, more data to record and more seizures to deal with. I imagine it is how most of us feel with whatever our every day life entails.
I think I have said at least 100 times and I can easily say it 100 more times without it loosing any truth or significance in my life….we, as a family are standing because of the prayers of the saints and the support and care coming from so many sources I cannot even begin to count.

I often think of Moses in Exodus 17:11-12
11 As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. 12 When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.

Doose is a batttle that Gabriel, Chuck and I have to fight. As determined as I am to win this battle my arms are weary. Thank you holding up our hands, through gifts to help us with our trip to Maryland, cooking g’s food, playing with our boy so we can get things done, praying for us, sending us encouraging words.

We survived our first Keto Halloween!

We filled goody bags with little treats for Gabriel. Then wrote a little note to the neighbors explaning his needs, what his costume would be and asking them to give him the bag.  We had a great response!  Every house we had delivered the goody bags to was ready for us! A couple families even got Gabriel extra little goodies 🙂

We filled goody bags with candy for the kids coming to our house to Trick-Or-Treat.  I wanted Gabriel to be able to help in passing out the treats but not have to look at and handle candy he couldn’t have.  He carried a purple pumpkin because purple is official epilepsy awareness color.  🙂  We also had a bag of hot wheel cars ready  him to trade candy for hot wheels. (He  got 2 pieces of candy  because he got so excited about a house that was further then we had delivered goody bags)

He was very excited about his safety glow sticks 🙂

He loved passing out the goody bags. He practiced saying “Happy Halloween” to every kid who came by.

he got especially excited about the houses that went the extra mile decorating. I was trying to get a picture showing his boots with the costume.

He was very happy with all of his loot! The glow sticks were by far his favorite! He had lots of fun playing with Nonna and Papa (my parents) who came over to celebrate with us, while Daddy was in class.