Monday, August 20, 2012


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, 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 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 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.


  1. Back to normal? What do you consider normal? I think about all that has gone on in your life this summer and I think that is "the new normal". You are amazing--you balance so much in your life and are such a good mom. I hope that after this weekend you can get a little breather before the next big event. I know I can use one. : )
    p.s. LOVE the licorice!

  2. I'm so glad you had a chance to go and soak in so much good information. Ben is blessed to have such devoted parents seek out all the information they can get to help him out. And I loved the extra blessing of the shuttle ride back to the airport! I hope all is well and you get a chance to breath when school starts this week.

  3. I love the tender mercies/miracles that we each get right when we need them! What a great way to end the trip. I loved reading about it, thanks for sharing. Amen to what Janet said, what is normal anyway?