one Last Hurrah and the Long Haul

Josh and Abby started school last week...

I made note that last year in these pictures Abby had a black eye.  This year Josh is on crutches...and Ben has a black eye :)

Their teachers seem super nice and they're excited to get the year under way.

Ben started on Monday...

Signing "Bus"

There's been some stress with that...having my little three year old "baby" with serious health issues being away from me for three hours a day...but he loves it and I think it's really good for him (and me).  I just need to learn to keep my cell phone on me at all times in case of a seizure and try and stay close to home.  We did work out a plan though if I'm not available.  Hopefully we will rarely have to implement it.

Matt didn't start kindergarten until today...

Handsome Kindergartener!  He picked out his clothes himself :)

Cool Dude!

What a character!

I made him be serious for one more picture :)

... so we had three days of just the two of us in the morning.

We took one of those mornings and did what ever he wanted.

Since the Fun Park and Bowling weren't open until almost the time Ben comes home we ended up buying new backpacks, playing tennis and then getting some ice cream.

It was fun watching him try and get the tennis balls in his pockets.

We had about an hour to play but he was running around chasing balls so much that after 30 minutes he decided it was time to go get the ice cream.

This guy is our athlete.  He was watching the sports channel on the t.v. above us as we ate and commented often on what was happening.  He even got down and demonstrated some of the moves he was seeing :)

It was great to have some one on one time with this boy.  We had a grand Last Hurrah morning!

So....I guess we're in for the Long Haul with the diet.

It started working!?...?! :( !? :) ...!

I can't decide how to feel about this.

Last week I started noticing long periods of little or no myoclonics.  I mentioned it to Andy and we both started keeping a close eye on it.  Within a few days there was no denying it.  I had to admit that it was working.  I was so relieved after the conference, thinking that we only had a month left and then the week after we got home things started changing.

 Part of me is really thrilled.  I can't tell you how nice it is to see my little guy running around (chasing his great grandma in circles around the kitchen and giggling to be exact) and not falling down and hitting his head....how nice it is to give him a bath and not once have him face plant into the water or fall sideways and get a big bump on his head from hitting the bathtub.  It's been a long year and a half of constant myoclonics.

The other part of me looks down a long road of possibly two years or more of this time intensive, strict, family affecting and emotional diet and wonders if I can handle it.  If I can, it will be well worth it if we continue to see the benefits we have the last week.  It has gotten a bit easier now that we're in a rhythm but not so much easier that I can look it in the face and smile.  Maybe some day :)

Really, I am happy though.  Finally!  Finally something is working!  After going through seven different meds and various other therapies and experiments over the course of almost three years with absolutely no benefit, it is amazing to actually have something change the seizures in a positive way.

He's still having them...especially in the mornings it's just like old times but throughout the rest of the day they are greatly diminished.  He still even has hard ones...Sunday night he face planted and got a bloody nose...but they are definitely fewer.

We haven't seen one of his "staring"/partial complex/focal seizures since we initiated the diet either.  Those weren't our real concern though but it's nice to knock another kind out as well.  He's still having big tonic clonics...we found him in his crib the other morning having one...but we're keeping an eye on those also to see if they are fewer as well.

That's my update for now...I've got to go weigh some hot dogs, ketchup and cream :)

Running for Ben 2011

As soon as we got Ben's diagnosis in June of 2011 I had a desire to do something...anything to help.

Dravet Syndrome is rare and under researched.  I had read that Dravet.org would set up a "Fund of Hope" in your child's name.  Once you raised $30,000 they would use that money to help fund a worthy research project.  I didn't know what kind of fundraiser I could do.  The thought was a bit overwhelming but then an idea came to me.  I contacted a very kind neighbor of mine who was on the organizing committee for a local race held each year.  I asked if we could use their race as a vehicle for our fundraiser.  I was surprised and quite relieved when he gave me the go ahead.

Matt and Ben with our banner

For a couple of weeks I went around to businesses in town and asked for donations of prizes for a raffle.

It was one of the hardest things I've ever done!  I was nervous to put myself so out there and vulnerable to rejection.  Some did reject me while others gave somewhat grudgingly or neutrally and there were just a few who were very gracious and even showed interest in Ben.  I have to mention by name Firehouse and Great Harvest.  Those two went above and beyond and were so kind.  (I try and support those two businesses as much as I can now :)

A friend of a friend, Tania Finn from (tk design), was extremely generous and donated her time and talent to design a logo for us.

My cousin's husband wrote a press release for us and we ended up in the paper!

We made stickers, fliers, t-shirts/tech shirts and a banner.

The idea was to buy a sticker for $2 and wear it during the race.  Each sticker purchased gave you a raffle ticket to put in any of the prize boxes.

 My other goal besides raising money was raising awareness.  That's where the fliers came in.  They had info about Ben and Dravet Syndrome as well as the logos of all the companies that donated.  We tried to talk to as many people as we could the night before the race when they came to pick up their packets.  This is also when they purchased stickers.  This was hard work as, for most of us, it was out of our comfort zone.
The next morning, the morning of the race, we continued to sell stickers until most of the runners had come in and then we drew the winners.

I had so many helpers from the very beginning.  From the people that babysat my kids so I could go around to businesses to the designer to all the volunteers who came and helped during the actual fundraiser and most of all my family...immediate and extended.  I was so grateful for everyone who was willing to help!

I actually was running the 1/2 marathon so Andy took pictures of the kids (especially Josh) running laps around our backyard in support of the fundraiser.  It was precious :)

This is not the greatest picture: post race at our booth with Abby's black eye and most of us not looking at the camera, but it's the best we got.

There are actually two races associated with the "Top of Utah".  So when we got done with the 1/2 in August, we turned around and did it all again 3 weeks later for the full marathon.

I saw Sherri Dew among the spectators and grabbed her for a picture.

 With those two events, along with spending 8 hours on a Saturday in front of a grocery store asking for donations, we raised right around $5,000.  I was quite pleased.  I hadn't known what to expect but I was happy with the outcome.  (Later I found out about a family that has been able to raise $30,000 at one event!...but that's okay...I was still happy with what we were able to accomplish :)
Dravet.org featured us in their newsletter here.

I'd say the best part of this experience was connecting with other people.  Everyone has a story.  We met many people who were in one way or another linked with epilepsy.
And something that was driven home to me the day at the grocery store is that you can't judge a book by it's cover.  People that we would never expect to donate to our cause were some of the most generous...often, again, there was some story or connection with epilepsy in general.

I learned so much about so many things from the whole experience.
There was a lot of follow up, loose ends and thank yous to be written during the couple of months afterward but it was all worth it.  So many generous people made it a very positive experience.
The question is, can I do this for the next 5 years to raise the amount we committed to?
We'll see :)
The nice thing is that there's no deadline.  We can take as long as we need.
The sooner the better though...time is ticking for our little Ben.

DSD4

Dravet Spectrum Disorders Conference #4

I'm so glad my blogging/Dravet Mom friend talked us into going to Minnesota last week.

The conference was fantastic!  We came away with much more knowledge concerning Dravet Syndrome as well as many new friends that are in the same boat as we are.  As much as the speakers were helpful and informative, I definitely felt that the connections we made and discussions with other parents were of the most benefit.  When you would meet someone new the questions were always similar:

1)  How old is your child?

2)  At what age did they have their first seizure and was it after a vaccination?

3)  What medications are they on currently and what have they tried in the past.

4)  Are they SCN1A positive?

5)  What types of seizures do they have and how frequent are they?

6)  What is your seizure control like?

We met people from around the globe...Australia, Mexico, Austria, Canada and Ireland!  (I absolutely loved all the awesome accents :)  Everyone's experiences have been different as a whole but there are always some similarities.

The first day we registered and then had our consultation with a physician on the top floor of the hotel.

In our group we also had an Irishman and a Canadian woman.  Both of them have children that are similar in age to Ben.  The doctor we met with is a Pediatric Neurologist at Mayo.  She also happens to be a member of our church which was a fun coincidence :)

We had a good discussion about different concerns and experiences and wanted to keep talking past our one hour allotment but we knew there was a lot more going on downstairs.

The rest of the day was spent in whole group meetings with presentations from the leading experts in Dravet Syndrome.  Topics ranged anywhere from early identification to management of seizures to cognitive and behavioral development to comorbidities.  

I took this picture for Ben.  He would have loved seeing "Go-Go" up on the screen :)

Lunch and dinner were also provided.  At lunch we met a sweet family from Kansas who had their beautiful son with them.  After dinner we met in groups according to the ages of our children and had a discussion.  Again, this was so informative and interesting.  We talked for almost three hours.  There's always so much to discuss amongst each other.  We heard horror stories as well as stories of hope.

This is Vanessa, a teenage girl with DS.  She was very friendly and frequently said hi and "talked" to us during the conference even though we had never met before.

After we went back up to our room we face timed the kids and then went over our notes from the day.

We were exhausted and slept very soundly.  

Breakfast was bright and early the next day.

The first speaker was Ms. Charlotte Dravet herself.  She talked about the long term outcomes in DS. 

Later in the conference, we got up our courage to go ask her what she meant about Ben when she said he was a unique child.  She was cordial but told us she didn't remember and probably just meant that every child was unique.

 It was interesting but we were glad she had a power point and could read most of her presentation there as her french accent is very strong...and very fun to listen to :)

Afterwards we had breakout sessions.  During most of them Andy and I split up so partially because we were interested in different things and partially because we wanted to get as much information as we could.  My favorites of the day were Creative Management of the Ketogenic Diet, Behavior Management, and Assistive Technology. (The last two took me back to my days at USU in the Special Ed. program).  A couple that I didn't necessarily enjoy but were important and interesting were Orthopedic Comorbidities (a lot of these kids develop a "crouch gait" as they enter into adolescence) and SUDEP (Sudden Unexpected/Unexplained Death in EPilepsy)

Andy's friend, Niki, from Ricks who has a son with Dravet Syndrome and happens to have epilepsy also.

Early in the day a woman came up to me that had been in our group discussion the night before but had left with her husband a little early.  We introduced ourselves and became fast friends...we had many similarities.

Andy and I and Mandee and her husband spent a bunch of time together over the course of the next couple of days.  They're wonderful people and I am so glad to have met them!  They live in Michigan now but we're trying to get them to move to Utah :)

Arturo, Mandee, Me and Andy

That second night there was going to be another group discussion according to region but Andy was feeling some cabin fever and so we took the opportunity to go to the Mall of America after dinner.

It is quite the place!

An amusement park inside the mall!

Every trip we've made this year we saw a Lego store and the amazingly large creations built entirely of Legos.

I tried to show perspective in this shot.  Look how huge it is compared to the people in the background!

We didn't have a lot of time there since we were dependent upon the hotel shuttle and it's schedule but we did get a good feel for the place and found some fun gifts for family members.

We were able to face time the family again and then we spent quite a bit of time talking over what we had learned that day.  There was so much to digest and my list of things to do for Ben when we got home was getting long!

Technology is incredible!  It was so neat to talk with the kids each night.  It felt almost like we were right there with them.

Another early morning and a full schedule for the day.

Topics included: Mitochondrial Comorbidities (which doesn't sound that interesting but the presenter was extremely good at explaining things and you could tell that he really cared about his patients.  Andy and I are thinking if we ever want to go to another specialist we will probably give him a try....plus, he lives in Seattle!  Who doesn't love a trip to Seattle?), Collaborating with your Education Team (here I asked what other families are doing with the Diastat issue.  Everyone I talked with was so surprised about our policy.  I didn't get many ideas to pass on to our district :(, Adaptation for Parents, Pharmacology of Anti Seizure Meds, and Complimentary Therapies.  The last two were presented by an extremely impressive woman who has a doctorate in Pharmacology and is also the mother of a girl with Dravet Syndrome.  I couldn't believe the knowledge she displayed as she spoke.

Before dinner we had to head out to catch our flight home.  We boarded the shuttle and shortly after, this woman who had just given the impressive presentations boarded the shuttle too!  It was just me and Andy, this woman and another woman with her young daughter...she also has twins who both have DS and turned 3 yrs old the next day.  We all talked as we rode and the doctor began asking us about our situation.  We got into a discussion on the Keto Diet (she happens to be on the advisory board of The Charlie Foundation).

When she found out the we had been on it for 3 weeks and hadn't seen any improvement she confidently said to drop it!  We discussed it further and she assured us that if he is in ketosis and there has been no change by now, there will be no change.  I wanted to give her money or a trip to Hawaii or something for telling us this.  At the conference so many people, parents and professionals alike, were telling us we needed to give it at least six months.  I was becoming depressed just thinking about it. This woman seemed so knowledgeable and informed that we couldn't help but trust her.  We will most likely finish out the two months that we promised Primary Children's but that's it if there's still no change.  She also gave us super advise on what medications to try for Ben's myos.  Andy was thrilled to talk with her about one of the most promising studies going on for a DS treatment/cure.  Again, she was so informed and gave us so much information about it.  We found out she was also one of the people who began the IDEA League (which is now Dravet.org) and is the founder of ICE (intractable childhood epilepsy).  Her list of credentials just kept getting longer :)  She told me to email her so she could send me a study on the keto diet that backed up her information and then as we parted at the airport she encouraged us to keep in touch with her.

We were kind of blown away with what had just happened.  Andy kept repeating that in those 15-20 minutes on the shuttle he got more from Michelle than out of the whole conference...at least more that was specific to our situation.  It had been a tender mercy to share the shuttle with her :)

Our flights home were uneventful and gave us a chance to catch a bit of sleep...

I had never flown Frontier before and enjoyed being welcomed on each aircraft by an animal :)

We spent time with Dominoe the Deer, Snow and Klondike the polar bear cubs, Chloe the fawn and Dale the mountain goat :)

 

We arrived home close to 1:00 a.m. and fell into bed as soon as we could.

A great big thank you to my in laws and my parents who were so kind to watch the kids for us while we were gone.  It was so reassuring to know they were in such good care.

The next morning I was so excited to go in and see Ben when he woke up.  I was looking forward to a great big smile and and excited "Maimee!"  Instead, when I walked in, Ben looked at me and half questioned, half stated, "Bapa.?."  I think he was wondering if because I was there that meant that "Bapa" wasn't anymore. :)

Well, it was a wonderful, full, exciting and informative trip.  We're so glad we went and now look forward to life getting back to normal...well, almost...we still have a big weekend ahead of us...more on that later.