Finding A CURE

I feel blessed to have a good friend named Evelyn Nussenbaum. She is a positive and happy woman with high hopes in helping to find a cure for epilepsy. Evelyn and her sweet hubby, Fred, have a two children with epilepsy. Actually, the kiddos are twins and they are fantastic! So, not only is Evelyn busy raising her kids, one Keto and the other has great control with meds, she is also charging forward with plans to host a huge benefit dinner in San Francisco for the C.U.R.E (Citizens United for Research in Epilepsy) Foundation next March 25, 2011. It will be a beautiful Friday evening event held at the Four Seasons. She really is amazing and I'm lending a hand in whatever capacity she needs me!


As a kick off to her efforts, Evelyn and her sweet hubby hosted a nice lunch in San Francisco. Thank you Evelyn for including me! It was really amazing to meet so many people focused on finding the cures necessary to help in the epilepsy battle.


The President of the CURE Foundation, Susan Axelrod, was in SF for the day and attended the lunch. It was really nice to meet her. It is fascinating how epilepsy binds families together automatically. It's an experience that changes you at the core and when you meet other families that are traveling that same path, you become linked in a way that is beyond description. I enjoyed Susan's down-to-earth personality and her openness in talking about the journey through her daughter's epilepsy as well as how the foundation is proceeding in its funding of different research projects. Check out the two links below.

http://www.cureepilepsy.org/home.asp

http://presidentscorner.cureepilepsy.org

Also in attendance were two researchers that have received grants from the Foundation recently. I had the pleasure of sitting next to Scott Baraban, PhD from UCSF and across the table from Daniela Kaufer, PhD from UC Berkeley.

Both Scott and Daniela are involved in research that will change the future for epilepsy patients. Scott's work with SCN1A gene mutations is right up our alley. Noah's GEFS+ is a sodium channel epilepsy caused by an SCN1A gene mutation. I found Scott's research fascinating and can't wait to see and hear more about it. Daniela's research focused on the blood/brain barrier. Well, once again, right up our alley considering that ketones (Keto Diet) break that barrier. Her research also focused on head trauma and status seizures in which proteins cross the blood barrier and create a path/genesis for epilepsy in the brain. Fascinating stuff. Once again, completely relevant for us because many many of Noah's seizures were status in presentation.

It was also great to meet several other parents that are fighting this battle and trying to help Evelyn host this benefit and find a cure for epilepsy! I believe there were about 18 people in attendance. At least 10 of those people will be lending Evelyn a hand!

If you live in the Bay Area, set the date on your calendars! We want everyone there! We can make a difference! Let's kick this thing!!

Thanks Evelyn! You rock girlfriend!
(ummm... I will not post pictures of me that day cause I had puffy allergy eyes and looked like I needed some plastic surgery help with my face!)

SuBdUiNg ThE SnEaK

Yes..... It can happen! Your sweet, kind, loving Keto Kid can become a calculating, sneaky food stealer. Your smiling cutie can put on that black knit cap, sneak into the kitchen and snarff down chips, cookies and goldfish crackers without you even hearing them! They will probably even lick up the crumbs! Your only sign..... dropping ketones........breakthrough seizures.

What can a parent do to Subdue the Sneak?

Here are a few ideas.....

Physical Surroundings...

1. Lock the Pantry
2. Lock the Refrigerator (takes a bit of creativity but it can be done)
3. Put non-touchables out of the child's reach
4. Install the small battery powered magnetic door alarm that will alert you to open cupboards.
5. Kitchen Open/Kitchen Closed - The entire family should be adapting to this. One of the most difficult things for a Keto Kid is to see everyone else "grazing" in the kitchen when they are not allowed that pleasure. No one grazes anymore! Kitchen is open. Meals are prepared. Kitchen is cleaned up. Kitchen is closed until the next meal time.

Psychological Adjustments

1. Remember it takes time for the brain to "forget" the tastes that your child has acquired during their lifetime. Be patient and understanding but be consistent and unchangeable when it comes to the Diet. Enforce rules followed by an increase of love and understanding.

2. Point out to your child that everyone should be eating in ways that are healthy for their bodies. Every body is a bit different and requires the determination to abstain from certain foods and drinks. Help them understand that although their meals are very different from their friend's meals, they are not alone in having to abstain from foods that they love.

For example..... Noah knows that I don't like to eat foods that are high in fats or sugars. So, while I am searching for his foods, he will pick up foods at the grocery store, read their labels and point out what I shouldn't and should be eating. I'm not perfect either and I explain to Noah what happens to my body if I cheat (Hello - Muffin Top). Noah's Diet has helped our entire family to be more conscious of our eating habits. We constantly tell him how lucky his is to eat pig bacon while the rest of us eat our turkey bacon. If we as parents can't control our eating and stay away from unhealthy foods....... how can we expect our children to do the same? Self Control is best learned by example!

Both of Noah's Grandfathers are Diabetic. Our elderly neighbor is also diabetic. Unfortunately, our neighbor (a man we adopted as another grandpa "PoePoe") chose not to exercise or adjust his eating habits during his lifetime. He is in the end stages of renal failure. Our sweet Poepoe has lost both legs due to gangreen. It has been a very sad time for him. We love him and see him as much as possible. But, I have tried to point out the importance of the "Diets" that our Grandpas are on because of the needs of their bodies. This has had a huge impact on Noah and his willingness to eat his Keto foods.

3. If your child is old enough to reason, remind your child of the consequences of "sneaking" food. How it feels to recover from their seizures. Show them videos or clips of them seizing or other children (available on the net). It is scarey but it will help them to understand the seriousness of their cheating. Lovingly take them in your arms and describe how happy they have been since their seizures have been diminished. Talk about this issue during regular conversation and not after catching them cheating. It's not about guilt. It's about choices and consequences.

4. Involve your child in the planning of their meals. Much of the "sneakiness" is in an effort to feel "in control" of their lives. Most children can eat what they want, when they want to eat and take as long as the desire to down the food. Our Keto Kids cannot. That is rough and it can cause power struggles over when, how and what to eat. Sneaking can sometimes be just another attempt to gain some type of control.

Ask your child what they want to eat. Do your best to incorporate it into their meals or copy it as much as the Diet will allow. For Noah, one Ritz cracker makes him happy. He doesn't have to have a huge baggie of Ritz to feel included. One cracker seems to keep him feeling like he is actively participating in normal kid-like eating.

When there isn't a happy medium, find something else that perks their interest instead. Keto Ice Cream is a winner for us and a great fall back. Whipping Noah's cream, adding melted Coconut Oil, peanut butter, pecans and some chocolate flavoring - then freeze. Candied pecans are another huge hit! They are "sweet" and he loves it. Butter and coconut oil melted, sautee the pecans, take out of the pan, add a bit of sweetener. Served with cheese stick and milk. Yummy!

Hope these ideas help you to Subdue Your Sweet Sneak!
I love my Keto Kid!

The World of Information at Your Fingertips

I have been thinking a lot lately about how frequently I search the internet for information. It is absolutely, without a doubt, the most amazing resource. I love it's convenience, ease of use, plethora of information from all over the world. It has been the medium in which I have found information or received information to help Noah through his journey with epilepsy and with the Ketogenic Diet as well.

Last week I was diagnosed with Rheumatoid Arthritis. I felt very discouraged on Day 1 after finding out. On Day 2, I went immediately to my computer and the internet in order to learn as much as possible about, what was now, my disease. On Day 3, I was discouraged again because of the horrors that I saw on the net about RA. Day 4, I was stronger and more confident because I had continued my internet information search and found some very scholarly positive information about RA and it's possible impacts on my life.

So many memories came flooding back to me as I sat at the computer. Those first few months of working with Noah's epilepsy, the hours and hours and hours of research on-line to just try and understand epilepsy. I needed info to wrap my head around what was happening to him. I needed to find help, "a cure," details on medications and side affects...... You name it and I had searched for it! Anything to help my child fight this battle. The same situation occured just before beginning the Diet. Hours upon hours of research to help us make the decision to try the Ketogenic Diet.

Overall, I did end up with great information. But I really believe, that many of the people posting on the internet about the diseases we may have, about epilepsy, and especially about the anti-epileptic drugs, are the ones in the middle of it or sometimes in the worst of it. When people's lives are going great, diseases in remission, child no longer seizing, Diet questions answered and having success, then they have their lives back and they are off busily living life. Can I blame them? No way!!

But at the same time, it has made me more determined than ever to keep my blog going for ketogenics. Because, dangit...... there has to be more positive bloggers and websites to outweigh the negative experiences that are posted en mass!!! Our voices of "been there, struggled, bawled but now look at the possibilities" need to be heard loud and clear!

People in the clutches of epilepsy need to know that they CAN do this! They are awesome. They are not alone! The Diet is an option, a great option but if it doesn't work, many of us have been down that road too. We been down the anti-epileptic drug road with their unavoidable side affects. We've made and experienced the outcome of those difficult drug choices. We have mourned over our children's situation, we have fought the IEP School battles. We have shouldered the insensitive comments from family, neighbors and friends. We have received much love and support from those same people. We have been able to see the sun in the darkest of times. People in the horrible times need to have access to positive and hopeful information on the internet.

So..... I'm here to stay for awhile. I might only be able to post once a month, but my main message is that YOU CAN DO THIS! The Diet is manageable. It can be a miracle. Children with epilepsy and their families are special. We carry a heavy and stressful life load but we are unique. We fight these battles and live to smile and laugh for another day!

Stay positive everybody!
Share the good news too!
I love my Keto Kid!

My Creativity is Waning

It's been three years and my keto meal planning creativity is waning. I've set a goal to "spice up" Noah's meal options. I'll keep the one's he loves like...

• Pepperoni & Cream Cheese Sandwiches with 2 grams of Fishy Crackers & milk (heavy cream watered down).
• Pudding - Almond Butter, Butter, unsweetened Baker's Cocoa, raw Oats and a glass of milk (hcwd).
• Candied Pecans - Sauteed pecans in melted butter and coconut oil sprinkled with a titch of sweetener. Served with a side of strawberries and a glass of milk (hcwd).

I really try to keep his foods mostly natural and non-processed. The pepperoni, bacon and sausage are exceptions. I use a lot of nuts. We love using macadamian nuts ground up to a paste for baking muffins and other goodies. I use a ton of cheeses too.

Here is my dilemma..... I like quick fix meals.... I don't want to bake every meal and.........here is the other tricky thing.... Noah's carb allowance per meal is 2.81 g. That is not a lot and it makes meal design time consuming.

Once I create some new meals........ I will post them. But, if you have any ideas or suggestions, please post them in the comments box or email me at bcholtfamily@sbcglobal.net

Have a great day!
I love my Keto Kid

Max Irvine - A Keto Kid

Fox News ran a story today about Max Irvine. Kristine and Troy are Max's parents and they did a great job in the interview today. Check out their interview.


Way to go Kristine & Troy! Thank you for spreading the news about the Ketogenic Diet. It's great to see people that have made this work! My Mother-In-Law saw the clip and emailed me. I had been looking forward to seeing it since Kristine, Max's Mom, a fellow Yahoo Keto Group member, mentioned it was going to take place. Things like this have such an influence. It helps all of us by teaching everyone and anyone about Ketogenics. It educates people all around us to the difficulties we face in dealing with epilepsy. Most importantly it demonstrates the reality of Ketogenics as a viable solution for epilepsy.

Kristine - You are darling! Your glasses are awesome! Your smile fantastic. You came across very honest and well spoken. Troy was also well spoken and hilarious too! The camera kept zooming in on Max trying to pinch his Dad's nose. Troy kept a straight face while managing to contain Max. So funny!

What a joy it was to watch Max being silly and then pulling the cutest grumpy face. I hope other parents of epileptic kids felt the same way I did as they watched this clip. I remember days sitting, watching and trying to play with my child in his drugged up seizure days. It would have made my year to have Noah reach up and pinch my nose like Max did with his Daddy today. My guess is that Max's parents cherish every sweet interaction because, like our son, there were years in which we never thought that might ever be possible.

The portion of the interview that cracked me up the most was.............when the reporter closes by saying how Max did a great job and how rough it is on a 4 yr old to sit through an interview. Then the reporter says - "GO GET THAT KID A TREAT!"
Dang! That was hilarious! I started laughing out loud! An entire interview on Ketogenics, and the reporter, trying to be super nice, suggests getting Max a treat. So funny! Keto Kids and treats are really words that don't go hand in hand. But, good on the reporter for trying and for doing the story. It was great!

My Child's Prayer

January marks 3 years for Noah on the Ketogenic Diet. Nope we don't have full control of his seizures. But we went from 150 tonic clonics (status included) each year, to less than 7 in the first year and half of the diet. And now just two in the past year and a half.

I just had to post Noah's prayer tonight exactly the way it sounded...

"Dear Heavnly Fodder,
Thank you for dis day.
Thank you for no seizures in 25 weeks...."


I couldn't be more grateful for the respite. I wouldn't wish this journey through epilepsy on anyone. However, I am grateful for the growth, the learning and the unity that Noah's epilepsy has given to my little family. I am thankful for the lessons in compassion that it has taught my other children. I am grateful for everyday that I have with Noah. I am grateful for the way that epilepsy has taught me to embrace people with special needs. I am thankful that I was the Mom that man needed when he fell because he had a seizure while crossing the street. I am thankful that I was the Mom that the Walmart employee needed when he fell onto the floor having a seizure. I am grateful that God has opened my eyes and my heart and given me a chance to help others. I am grateful for the people who helped us during Noah's seizures. I am deeply grateful for the people in the future, that will, if necessary, be a Mom or a Dad to my son, if he has a seizure when he is full grown and out in the world. I am grateful for the many ways in which epilepsy has changed how I see and experience life.

We are not defined by the events, illnesses or challenges that happen to us. Rather, we are defined by how we handle those trials, what we chose to learn from them and if we chose to grow and become more than we were.

"Thank you Heavenly Father!
Thank you for this day.
Thank you for 25 weeks without a seizure."

Cathy

Why Wouldn't You?

So many times, I've felt frustrated as I hear families struggle with the idea of beginning the Ketogenic Diet...

I will admit that the Diet is....

1. Overwhelming at first.
2. Heartbreaking as your child goes through withdrawals from their food comforts.
3. Time Intensive.
4. Detail Oriented.
5. Confusing.


BUT I HAVE TO ASK - WHAT WOULDN'T YOU DO TO STOP THE SEIZURES?

Here are the positives from my experience -

1. Less neurological side effects than medications.
2. A feeling that you are making a difference.
3. Active positive involvement in your child's epilepsy control.
4. Seizure control for 2/3 of patients.
5. Possible medication wean.
6. A neurological "awakening" experienced by many keto kids.
7. HOPE!!!

I wish for all of you that your Keto experience leads to seizure freedom. Ours has not. But we have gone from 150 seizures a year, which included many many status seizures, down to 2 in the past year and a half!! I can tell you that the only regret I have is not starting the Diet sooner! We failed with four meds before trying the Diet. It would have saved us hundreds of seizures, week in and week out in the hospital, tons of needle sticks for blood draws, side effects galore and maybe.... just maybe.... we could have avoided the few and small developmental delays we are seeing now.

Please don't wait...........if you are thinking about trying the Ketogenic Diet........DON'T WAIT...........WHAT IF IT COULD WORK FOR YOUR CHILD?