Category Archives: The MAD Journey
January 13, 2014 Wean, Wean, Wean All The Way Home
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.
Tags: Diet Therapy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, mad, MAD recipes, modified atkins diet for seizures, modified mom, modifiedatkins recipes, modifiedmom, seizures
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October 22, 2013 Walk To End Epilepsy 2013
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:
http://www.stayclassy.org/pasadena/events/walk-to-end-epilepsy-registration/e24370
Once you register, you will receive an electronic receipt which will walk you through how to join a team. Our team is Team MODIFIEDMOM.
http://www.stayclassy.org/fundraise/team?ftid=25147
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:
http://www.stayclassy.org/fundraise?fcid=260407
Thanks, and hope to see you there!
Tags: Diet Therapy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, mad, MAD recipes, modified atkins diet for seizures, modified mom, modifiedatkins recipes, modifiedmom, seizures, The Epilepsy Foundation, The Epilepsy Foundation of Greater Los Angeles
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June 26, 2013 The Long Road Back
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.
Tags: Diet Therapy, epilepsy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, mad, MAD recipes, modified atkins diet for seizures, modified mom, modifiedatkins recipes, modifiedmom, seizures
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May 2, 2013 Kids Speak Up – A Follow Up
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.
Tags: Diet Therapy, epilepsy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, Kids Speak Up, KSU PPI, mad, MAD recipes, modified atkins diet for seizures, modified mom, modifiedatkins recipes, modifiedmom, seizures, The Epilepsy Foundation, The Epilepsy Foundation of Greater Los Angeles
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April 11, 2013 Kids Speak Up for Epilepsy
KSU 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:
http://www.stayclassy.org/fundraise/team?ftid=23037
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.
Tags: Diet Therapy, epilepsy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, mad, MAD recipes, modified atkins diet for seizures, modified mom, modifiedatkins recipes, modifiedmom, seizures
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March 4, 2013 Good News and Raising Hope for Epilepsy
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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February 14, 2013 Happy Valentines Day!
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!
Tags: Diet Therapy, epilepsy, Epilepsy Diet Therapy, ketogenic diet, Ketogenic Diet for Seizures, mad, modified atkins diet for seizures, modified mom, modifiedmom, seizures
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January 10, 2013 A Day at the Beach
On January 5th, we were lucky to have the opportunity to attend the Epilepsy Foundation of Greater Los Angeles Family Holiday Party & Parents’ Forum. It was a picture perfect day in Santa Monica at the Annenberg Community Beach House with sunny skies and mild temperatures. Upon arrival we were enthusiastically greeted by the wonderful volunteer staff, including Nathan Jones who immediately made Casey feel at ease with his enthusiasm and warmth. If you get the chance, check out his website and video A Seizure by Nathan Jones, helping to raise epilepsy awareness: http://www.a-seizure.com/A_seizure_by_Nathan_Jones/A_Seizure_by_Nathan_Jones.html
Kids and parents alike were given the opportunity to mingle and chat. Nathan lead sports activities outside on the beach with the teens, while the younger kids had a plethora of arts of crafts to work with indoors. There was even a meeting room for adults filled with art supplies which I found very therapeutic. I can’t remember the last time I was able to sit down and paint.
After a delicious lunch, a parent forum was led by Raman Sankar, MD, PhD, Professor of Neurology and Pediatrics and Chief of Pediatric Neurology at the David Geffen School of Medicine at the University of California, Los Angeles. He is also the Director of UCLA’s Ketogenic Program, and we have been lucky enough to work with his group over the past 2 years. The meeting was very informative both to families new to the diagnosis as well as veterans. It was nice to relax knowing our kids were being well taken care of by others who knew exactly what to do in case of a seizure. It allowed us to focus on the meeting and have meaningful dialogue without distractions. We had the chance to learn more about the other families in attendance and form relationships with those also living with the effects of epilepsy. There were several other families practicing the Modified Atkins Diet or the Ketogenic Diet and after the forum we introduced our kids to each other. I had to chuckle when Casey was introduced to one girls whose first comment when she found out he was on the same diet was “So you don’t get to go out to restaurants either?”. I think it was really helpful for the kids to meet others who were going through the same challenges. It is truly amazing how strong they all are. Many of the volunteer staff were young adults living with Epilepsy and were great role models for the kids in attendance. Casey is raring to volunteer knowing he can work with cool people like Nathan and the others.
One of the highlights of the day for me was meeting and having a lengthy conversation with Jim and Nancy Abrahams. After their son Charlie found success with the Ketogenic Diet after suffering uncontrolled seizures up to 100 times a day, they founded the Charlie Foundation to help cure Pediatric Epilepsy, back in 1994. I feel we owe a great debt to them for bringing the Ketogenic Diet diet into the public eye and making it more accessable to anyone willing to try diet therapy. I am certain that if it were not for this amazing couple, our family and many like ours would be living a very different life today. I was also finally able to make a personal confession to Jim that has given me nightmares for over 3 years now. At the LA Walk for Epilepsy back in 2009 I very smugly walked by his booth thinking to myself, “no way in hell will we ever try something like that”. I think he understood, and now I can move on with one less thing to worry about.
As we were gently swept out of the building, I think there were many of us that didn’t want the day to come to an end. A big Thank You to Susan Pietsch-Escueta, Executive Director of the LA Epilepsy Foundation of Greater Los Angeles along with everyone else who made this such a special day. I would highly recommend that you and your family get involved with your local chapter in order to form a greater network for you and for them.
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December 1, 2012 And The Countdown Begins
I can hardly believe that the holidays are upon us once again. They really snuck up on me this year. A few days ago Casey said to his brother, “you will be getting your Advent Calender soon”, but what I heard was “I won’t be getting an Advent Calender soon-because I can’t have chocolate”. Now, that could just be my mind playing tricks on me, but I don’t think so. Even though Casey really looks forward to the holidays, I know that the they are also a most difficult time for him. The bottom line is that he just loves food, and when all those wonderful things that we experience only once a year begin to creep into our household, and his school, and his grandparents houses, and his friends lunch boxes and the party tables, it must be the most challenging time of the year to be on this crazy diet. So, we do what we can to make things seem as normal as possible; an advent “bag” filled with a little treasure each day, a faux-pumpkin bread, peppermint flavored hot cocoa (sweetened with stevia of course). And Casey bravely goes through each day, never wavering from the diet. But once in a while I see that look pass over his face and I wish that for one day he could share in all the things he so misses.
In January, Casey will have his 2 year check up. During our last visit with his MAD team, we discussed beginning to add some carbs back into his diet. It will be a slow process while we monitor seizure activity with each increase, but Casey is hoping to reach a more reasonable level of carbs by the end of 2013. He has his sights set on eating “a bag of Lays Potato Chips, because there are only 15 carbs in the whole bag”. I am not even certain he likes Lays more than any other chips – he just likes the idea of eating a whole bag of anything, “because I can”.
I never thought I would wish for the day to come when my son could eat a bag of chips.
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September 3, 2012 An Unexpected Vacation
Toiletries – check
Hiking gear – check
Fishing gear – check
Clothes – check
Bag of Meds & supplements – check
Diastat along with explicit instructions on how to use it in case of emergency – check
Large Family Sized Ice Chest filled with pre-packaged MAD meals, snacks, cream, pots, pans, spatulas – check
Daily Meal Planner – check
Seizure Chart – check
Emergency bracelet – check
One of Casey’s friends (or I should actually give the credit to his mom) was nice enough to invite Casey on a trip up to Mammoth Lakes for 5 days even after I told her about his diet and all the space he would need in the car to accommodate it. After cooking and baking all day yesterday to prepare for the unexpected trip – he left early this morning, barely fitting all his gear in an already filled-to-the-brim car. And though I will miss his smiling little face and constant chattering, I feel so unbelievably free and at a little bit of a loss as to what I will do with all this unexpected time on my hands. The week will be free of making separate meals, planning out menus at beginning of the day, timing our activities between snack and meal times. We could go out to dinner with my older son to a restaurant where we can all order off of one menu. And no need to bring a MAD meal in a Tupperware container that we must graciously yet forcefully ask the waitress to heat up. Or we can take a long bike ride on the beach without packing a snack or even caring what time we will get back. Dare I think about reading – and maybe even finishing – that mindlessly indulgent novel that all the other women are reading this summer?
So, you see, in the end this is a little unexpected vacation for Casey AND for me.
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