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the adventures of a MAD mom

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So much has occurred since last we posted.  Casey is now a freshman in High School.  He was in 5th grade when originally diagnosed, so it has been quite a journey for him and for all of us.

In November we visited Casey’s MAD Team and made the decision to completely wean him off the diet.  So, for the past several weeks we have added 5 carbs per week to his meal plan. Once he reached 80 carbs per day, on Christmas Day, Casey had his first “regular” meal in 3 years.  Meaning, he had what the rest of us had including Ham, Butternut Squash Lasagna, Potato Pancakes and Salad.   It was nice to have our extended family around to share his first meal back in the real world .  We were all a bit anxious, but he seemed to be fine that evening and the next morning.

It was a real challenge for Casey to get all his carbs in each day.  He was apprehensive about eating so many in a day, and tended to save too many for the evening meal.  He is also used to the very limited food selection he has had for the past 3 years, so adding in new items is a little scary.  Each has to be monitored to make sure it does not cause seizures.

At first, Casey experienced a slight increase in his daily absence seizures. Then, as has been customary with a drastic change in diet, he stopped having seizures all together.  Now, we are seeing a few a day.  If he can remain off the diet is a guessing game at this point.  It has, for now, provided a little freedom in terms of planning.  We can now go out without planning each and every outing.  If something spontaneous comes up, we have a little flexibility in terms of feeding Casey while out in the world, rather than running back home for a home-made snack or meal.  I no long panic when stuck in traffic knowing I can pull off to pick up a snack or meal on the go.  And Casey is enjoying newfound freedom, too.  Sharing lunch at school, or deciding to stop and get something to eat between school and hockey practice.

Our next step is to get a full lab panel once Casey has been off the diet for a full month.  That will occur in February.  We are unsure where we will go from there, but he is in a much better place than he was 3 years and 12 days ago, as is our entire family.

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If you are in the area, we hope you can join us for the November 17th 2013 Walk To End Epilepsy at the Rose Bowl in Pasadena.

You can create your own team, or join ours!  Here is the website to register:

Once you register, you will receive an electronic receipt which will walk you through how to join a team.  Our team is Team MODIFIEDMOM.

You can just walk with us, or you can fundraise as well on your own page.  Kids can receive Volunteer Hours for the walk and for fundraising to fulfill their school requirement for community service.  Be sure to bring along a form for signature if required, and check with your individual school to be sure this meets their volunteer hour requirements.

The event is always fun – filled with entertainment, giveaways, celebrities and lots of cool people.  Last year there were also food trucks from around the city.  We hope you can all attend.  If you can’t attend, but would like to make a donation you can donate directly to our team or Casey’s page:

Thanks, and hope to see you there!

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I have come to the conclusion that my increasingly infrequent posts reflects the fact that MAD has become a way of life for us.  In the beginning, I wrote regularly as it was a type of therapy for me.  A good release, and a way to find others out there struggling through the process.  But as the diet has become the “norm” for us, there is less to write about and less need for me to find an outlet.  But now we face a new challenge – going off the diet.

Since late last year we have slowly been weaning Casey off of the MAD.  He is now up to 35 carbs per day.  To the average person, that is a crazy low amount of carbs, but to anyone on this diet, you know it is time to celebrate.  We, in fact, are having a hard time using up all those carbs in a single day.  It is not quite enough to dive into a piece of pizza or anything crazy like that.  However, 10 carbs worth of green beans or zucchini could put anyone over the edge.   So, for the first time in over 2 years Casey is able to combine carbohydrate rich foods in a single meal.  For example, today for lunch he took salame, crackers (made with low carb pizza dough), string cheese AND a plum.  Imagine!  And there is a lot more room for snack in the new plan as well.  Still, nowhere close to what a typical teen is eating, but to Casey it has provided a bit of freedom to indulge.

Today, Casey will culminate from middle school.  We will spend part of the summer coming up with new  and higher carb count foods.  He also has several doctor appointments  where we will decide where to go from here.  We are not sure what will happen as we ramp up the carbs to a “normal” amount, but in the end Casey is still having a handful of seizures every day.  As he nears driving age, we will have to think about the ramifications of that amongst the other areas where it impacts his life.  Only time will tell.

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We are back from a very exciting trip to Washington D.C.  It was one of those trips that neither of us will ever forget.  Where to begin?

After much discussion we made the decision to stay at the hotel where the conferences were taking place, even though they would not accommodate us in any way other than providing a small refridgerator.  This meant no microwave or other means by which to heat Casey’s food.  The decision to stay there despite this  was based upon having Casey as included in the group as possible, making it easy to join last minute and after hour activities.  Although I was very puzzled by the choice of hotels unwilling to make accommodations during an epilepsy conference, the idea that Casey would be fully included in the group swayed us to stay.

As is the case with every trip now, I began to bake and cook about a week before.  Casey and I reviewed old recipes and new to come up with items that did not require heating.  We used our pizza dough recipe to make garlic crackers for paring with salame.  I baked batches of muffins in assorted flavors. My husband shrink wrapped bacon in individual servings.   I reviewed the D.C. Metro links to the local Trader Joes and Whole Foods in relation to our hotel.  Due to the impending air traffic controller furloughs, we made sure to have a whole day worth of meals with us prior to boarding the plane – just in case.   With little delay, we arrived in D.C. in the evening just in time for dinner.  A restaurant just across the street from the hotel was able to accommodate Casey’s MAD needs.

I woke early the next morning to navigate the metro.  Two hours and many transfers later I was back at the hotel with all the food items we would need for the week  (this 1/2 hour trip turned major outing due to maintainance on 2 of the metro lines that I had not factored into my commute).

We were able to get a little sightseeing in before the Kids Speak Up Orientation began later that day.  There were over 40 teens from across the U.S. who were able to meet each other and learn a little about each other.  Smartly, the organizers separated the teens from their parents, and they together shared their experience battling Epilepsy.  As you might expect, they became fast friends.  We parents were also able to share our experiences with each other in an environment that only those of us living with this can understand.

The following day was spent preparing for our trip to Capitol Hill.  We were fortunate to have many past attendees as well as interesting guest speakers to help guide us in our mission. We learned a lot about the political process and pending legislation that will, if passed, benefit those living with Epilepsy along with many other diseases and disorders.

Finally, it was time to visit Capitol Hill.  Our group visited our California Senator’s offices together.  Each teen spoke a little about living with Epilepsy and the impact on their lives.  It was very powerful to hear each of their stories and struggles.  We then separated to visit our personal representatives in the House.  In all of the meetings, the representatives were very supportive of the teens and their mission.  They encouraged the teens to continue to advocate for themselves and others,  and to take part in the political process throughout their lifetime.  I think it made a big impact on the all the teens and their families.  I know it did for me.

A huge Thank You to the Epilepsy Foundation for hosting and planning this event that will have such a great impact on all those living with Epilepsy.  It was really a life changing experience.

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IMG_6877KSU 2013 Participants – Ulysses, Selina, Audrey, Matthew and Casey

As I mentioned in my last post, Casey has been selected to attend the Kids Speak Up for Epilepsy Conference in Washington D.C.  There, he will legislate for additional awareness and funding for Epilepsy research and programs.  He and his team of 5 teens from the LA area will leave next week for the conference.  They are currently raising funding for the trip, and you can find more information at the following link:

I hope you will send along your stories in regards to how Epilepsy has affected your family.  Casey will hand deliver them during his day on the hill, Tuesday April 23rd.  We will post a follow up after the conference with photos and information from the event.

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Some exciting news from The Epilepsy Foundation recently arrived for Casey.  He was one of 5 teens chosen to represent the Epilepsy Foundation of Greater Los Angeles in their 2013 Kids Speak Up Program.  Casey, along with the other teens, will travel to Washington D.C. to speak up and speak out to Congress and other local policymakers about the ways to help bring more awareness about what it means to live with epilepsy.

Casey was able to meet the other teens at a pre-planning meeting for the event.  What a great group of kids it is, and wonderful that they could all come together to share their stories.  In their immediate bonding, I could see how important it is for them to share with each other what only they experience.

One of the participants, Selina Smith Budinger, 18, is taking on a fundraising event that would impress those with years of experience.  Yet this is her first time planning such an event.  Please take a look at her website, and better yet, if you are in the area join in a wonderful day – Raising Hope for Epilepsy, A Charity Polo Event.   There are also sponsor opportunities available.

I will be posting more about the Washington D.C. trip as it nears and would love to hear from other families what messages or information they would like to have conveyed to Congress.

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I hope you all enjoy your Valentines Day and are able to incorporate some sort of fun MAD meal or little project into the day.  We made heart shaped french toast, using a cookie mold brushed with butter.  Covered in a little “caramel” sauce (which is just 50/50 browned butter and cream mixed with stevia), and topped with berries – Casey said it was delicious.   I also made a little batch of Peanut Butter Cups using a recipe I found on the Modified Atkins yahoo group site way back when.  If you go to the recipes on the site, it is actually called Low Carb Fatty Fudge (Josephine). Now, I just have to come up with dinner!

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