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the adventures of a MAD mom

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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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Happy New Year to everyone.  Casey and I had a lot of time over the holidays to create some new dishes, so I will do my best to post more often with our new creations.  This one has been great for both Casey and the rest of the family because we can make it in a big batch, use it in many ways and the whole family can eat the same meal.  Its super easy, too, which is always a big bonus.  The original meal calls for deep-frying the meat in lard, but we found that if you cook it in a dutch oven there is plenty of fat on the pork to cook in, and the end result is a very fatty meat – great for the Modified Atkins or Ketogenic Diet.

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Pork Butt or Shoulder, cubed in 2″ pieces with some but not all of the fat removed.  (we use a 6 lb +/- piece which is good for dinner for 8 or more with leftovers, but you can use more or less depending on how many you would like to serve)

Salt

Pepper

Regular or Smoked Paprika, optional, or spices of your choice

Mix salt, pepper and paprika together into a rub. Rub all over cubed pork and let marinate 1-2 hours, up to 24 hours.

Pre-heat oven to 325 degrees.  Place pork in a dutch oven with lid.  If there are any bones in your pork, add those to the pot as well.  They add to the flavor.  Cook for 2-3 hours or until pork comes apart easily with fork.  Let cool, then shread with 2 forks.   If you do not have a dutch oven, you could easily use a Crock Pot for this meal as well.

Serve carnitas as is with a side salad, or in a low carb tortilla for tacos or burritos.  Casey likes to slice a low carb tortilla into strips and bake them in the oven until crisp.  Then make a nacho type dish with the carnitas and a little cheese sprinkled on top.  You can also top with lettuce, onions, mexican cheese, sour cream, hot sauce or we make sugar-free salsa arbol to add a little kick.  Just make sure to count all those extra carbs.

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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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Casey loves lemons, and has really missed them while on MAD.  He used to squirt lemon or lime juice on chicken, taco’s, salad, fruit and just about anything that would not curdle.  But now, they just have too many carbs to “waste”, so he has lived without them for almost 2 years.  I recently had a brainstorm while going through one of my cookbooks.  If I could make a whole batch of cheesecake snacks with only a small bit of lemon and lemon rind, there might just be enough lemon taste without so many carbs.  So, starting with my pumpkin cheesecake recipe I played with different amounts of lemon juice and rind until I came up with one he both liked, and was willing to “waste” the 2 carbs on  (the “waste” is Casey’s terminology for using too many carbs on an item that may not be worth it, or that would otherwise make him give up something he wants to eat during his regular meals).

I used “Pink Lemonade Lemons” which are similar to Ureka’s, because that is what we grow, but I think it might be really nice with Meyer lemons, too.  Or even limes, for a Key Lime type dessert.

Preheat oven to 350 degrees

8 oz. package cream cheese *

1 cup whole cream *

2 eggs *

1 Tsp Vanilla

16 Scoops pure stevia or 40 drops (or to taste)

2 oz. Lemon Juice

Tbsp. Lemon Rind – just the yellow, as the white will make it bitter

Whip together cream cheese with cream until smooth, either with electric mixer or with a whisk.  Add vanilla and stevia.  Whisk in lemon juice and lemon rind until smooth.  Beat  in eggs, one at a time, until just combined.

Grease 8 – 6oz. ramekins with butter or oil.   Divide mix evenly amongst dishes.  (If you have a gram scale it should be approx. 85 grams per serving.)

Bake until just set, about 30 – 40 minutes depending on your oven. Turn oven off and let sit for 10 minutes.  Transfer to wire rack and cool completely.  Cover and refrigerate until chilled – about 2 – 4 hours.

We come up with 2 cbs. (1.93) each but make sure to count your own.  It will differ depending on the brand of cream cheese you use.

*Note, allowing cream cheese, cream and eggs to reach room temperature will make preparation much easier!

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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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Casey loves to start – or end – his day with this warm apple treat.

Apple – sliced to 1/4 (+/-) inch slices

1 egg (for larger pancake use 2 eggs)

1/4 c. heavy cream

2 Tbsp. Flax Meal

1 Tsp. Coconut flour

Dash Cinnamon

Stevia to taste

Coconut Oil – for frying (about 2 tbsp or enough to cover bottom of pan and keep pancake from sticking)

Turn broiler on low

Arrange apple slices on bottom of oven proof pan in melted coconut oil.  Cook,  covered, on low heat for about 5-10 minutes or until apple is soft and slightly brown on bottom.

Whip together egg and cream.  Add rest of ingredients and mix well.  Pour batter over cooked apple slices and cook covered for a few minutes.

Transfer pan to oven as far away from broiler as possible and cook until golden brown.  Watch the oven – this will only take about 2 minutes or so.   If you do not want to use a broiler, you can either finish cooking the pancake on the stove top in a covered pan or use another oiled pan to flip the pancake into to finish.  The pancake will fall apart if you try to flip it with a spatula.

Invert pancake onto a plate, apple side up.  Decorate with whipped cream if desired.

Enjoy!

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The birthday boy

It is so hard for me to believe, but yesterday marked the 13th anniversary of Casey’s birth.   He was so excited to become a teen he could hardly sleep for weeks prior to the big day.  We joked about how he would stop hugging me and that I should get all the hugs in I could before the day arrived. But when he woke, the first thing he did was give me a big smile and hug which is not a bad way to start any day if you ask me.

Yesterday also marked a little more than 3 years since Casey was diagnosed with this terrible monster, Epilepsy, that we continue to fight daily.  Since converting back to MAD, Casey has been suffering several absence seizures a day, mainly in the mornings, but longer in duration than we have seen for some time.  For the previous 10 days we vacationed in altitude, which I believe worsened the circumstances because now that we are back at sea level he seems to be doing much better.  He has notoriously had reactions in changes to, or transitions between the diets and to different levels of Keto, but it has generally been a honeymoon period where he has no seizures at all for a  week and then we are back to a few a day.

I have also heard that the teen years can either put an end to the seizures or reek havoc on them. So, we will keep an eye focused on him and hope that the majority of the seizures go away so that we do not have to contemplate going back on Keto.  Casey is SO loving having many of the meals he missed while on the Ketogenic Diet, and so much happier that it has made an impact on the entire family.  Not to mention gaining back all those hours previously used for weighing and measuring.