KETO KID

Not A Lot of Growth

2010-12-02T23:21:00.000-08:00

Today's Quotes from Noah -

"Will I still be this size when I am old?"

another sweet but hard to hear comment...

"My friend is growing like a weed and I am growing like a snail."

Being small isn't all that bad unless EVERYONE you meet comments on how little you look. Being small isn't that bad unless all of the other 7 year olds are 7"-8" taller than you. Being small isn't hard unless every where you go kids younger than you talk to you like you are a 3 year old. Being small isn't too bad unless you still can't ride many amusement park rides with your family so you have to wait with your Mom or Dad in the "Baby Swap" rooms while your brothers go on the coasters. Being small isn't too bad unless you are still sitting in a booster seat in your Mom's minivan. Being small isn't the worst thing but it isn't always fun either.

Noah began the Diet 4 years ago when he was 3 years old. He weighed 35 lbs at that time. He was the average sized 3 year old both in weight and height. Today, at age 7, Noah is 40 lbs, on a good day, and 42" tall. That is the average weight and height of today's four year old child. Could it be because of Ketogenics? Absolutely. Growth delays are a possible side affect of the Diet. But, "they say" that once these kiddos stop the Diet, many experience a surge in height. Our little friend that was seizure free after 2 years of Ketogenics grew like a weed after weaning away from the Diet. Within two months, his shoulders broadened and his height soared. He is a tall boy now without any issues.

Could it be genetics? Sure. My sweet husband's Grandmother and Mother are not tall people. I believe his Grandma was about 5'. I think his Mom is about 5'3". Actually, my husband and I are 5'6". Definitely not the tallest in our families. My Dad is 6'0" and my Mother is 5'11". Tallies!

So which do we hope is at the root of Noah's possible physical growth delay? It doesn't really matter. We would take seizure freedom over height any day but it is dang hard to keep Noah's spirits up when he is feeling so different from his friends because of his Keto lifestyle and now his smaller size too.

He is a sweet boy. I love my Keto Kid!

KETO ARTICLE

2010-11-18T15:13:00.000-08:00

Our Keto friends in Berkeley, Fred & Evelyn, are fabulous writers. They are writer's by professional, that is how fabulous they are!! Check out Fred's article in the NY Times on their son and his Ketogenic Diet.

Awesome Fred! Way to get the word out! Education=Understanding!

http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?_r=1&src=me&ref=magazine

Emergency Prep for Keto Families

2010-10-19T00:30:00.000-07:00

I've been thinking about this topic for awhile. In fact, being prepared for emergencies, of any kind is a big job. For Keto families, it's a bit overwhelming. Here are a few things we have done to make sure that we are prepared during emergency situations so that Noah's Keto lifestyle could continue undisturbed.

Noah's school teacher has my cell number and I have hers. You actually have about 30 minutes of texting capability once an earthquake or other disaster occurs. Often times, the landlines go down or are used only for emergency services. Cell coverage will go down sometimes too but you can get about 30 minutes of texting after a disaster.
Out-of-State Emergency Contact - My Mom lives in a different state than we do. In the event of a large natural disaster, it is easier to contact someone that lives in another state than in your own area. So, my hubby and I will both contact my Mom in order to communicate if necessary. My children's schools also have my Mother's phone number.
2 "Old People"Style Pill boxes: At any given time, we have two 7 day pill boxes prepped with Noah's meds/supplements. If we had to evacuate our home after an earthquake, we would grab these pill boxes and dash out the door.
Prescription bins. All prescriptions bottles are kept in a plastic tupperware like bin. The kind that cost $1 at Target. (Yep that's me - big spender ;p - I also use these type of bins to keep my shoes in with a nice label on the outside of the bin describing the shoes. )
Keto Binder - The Keto Binder and scale have a designated spot in our cupboards. Within the binder are simple recipes, non-cream recipes, complicated recipes, medical records, list of low carb meds, daily meal and med schedule and Noah's seizure protocol plan.
Emergency Diastat bag. Hanging on the wall near the door to the garage is a miny backpack with the bulb syring, diastat and stop watch. Easy to grab on the way out the door.
72 Hour Backpacks. You can look these up on the net and create your own. Basically, it's very simple survival foods, water, clothes, meds, first aid kit and flashlight. It can get you through for 72 hours. Easy peasy lemon squeezy.
Practice Practice Practice. Yep, we did! We had an emergency drill. It was initiated by the Emergency Preparedness at our church. She randomly requested that we try to evacuate our home for 24 hours; suddenly & unexpectedly. She called our home and described an emergency earthquake scenario and told us that she would check on us in 24 hours to see how we managed. We jumped to it. Bry and the boys grabbed their 72 hour backpack kits. I grabbed the Keto stuff, tossed it in a cooler, grabbed the pill bins, the mini backpack, the emergency waterbottles. Bry grabbed the tent and blankets and we camped in the backyard for 24 hours. We were out of our house in less than 10 minutes and set up in the backyard within 20 min. My boys loved the practice and it was very empowering to know that we could do it! We could do it even with the Keto stuff. Awesome!

**Little tattle - Bry went into the house after the boys were asleep to take care of his emergency need for watching ESPN. Sometime around 11pm, I heard my oldest son say...."Ummm, Mom? Why is Dad in our house when we are pretending that it's condemned and sleeping out here in a tent?" Hahahaha. Busted!)

Hope that helps!! I love my Keto Kid!

ONE YEAR!!!

2010-08-02T22:04:00.000-07:00

It's a miracle,
a landmark,
an amazing moment in time........
July 28th, 2010 marks
ONE YEAR SEIZURE FREE for Noah!

Thank you to everyone for the prayers, support and friendship over these past 7 years. We feel so grateful to our God for his guiding hand throughout this journey through epilepsy!

Congratulations to our Super Mr. Awesome Noah! He is a joy beyond joys!

It has been a great year!

Finding A CURE

2010-05-18T10:48:00.000-07:00

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

2010-04-12T15:25:00.000-07:00

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

2010-03-24T12:14:00.000-07:00

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

2010-03-10T11:27:00.001-08:00

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

2010-01-31T20:32:00.000-08:00

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

2010-01-18T01:47:00.000-08:00

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?

2010-01-03T01:16:00.000-08:00

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?

Email to The Teacher

2009-12-15T10:21:00.000-08:00

Hi All - Here is the email I just sent to Noah's teacher today..... It's a first for us but I know it was the right thing to do. Maybe I'm making him feel different by allowing him not to go to school on Friday. Who knows? I just think that if it was me............it would be crappy to have to sit watch all of my friends eat their holiday food and talk about their family holiday food traditions. I hope I didn't over react.... Any thoughts?

Hi Teacher (name changed to protect the innocent - hee hee)-

Both Bryan and I feel like the focus of the Winter Holiday Breakfast on Friday is going to be over-the-top too difficult for Noah. We just can't focus on the "foods" of the holidays with him. We cannot adjust his meals to accommodate the timing of the breakfast and he cannot snack in between his meals. We don't want to bring in a "Special Food to Share from our Holiday Tradition" because we purposely downplay those food traditions in our home. He has begun to see how "different" his buddies eat at school which makes it even harder for him to listen to every child talk about the traditional foods their families eat and watch everyone sharing those foods with each other except for him.. We have spoken with him and given him the choice of whether he wants to be in school for Friday's Breakfast or stay with me. He wants to stay with us. He won't be in school on Friday at all. I hope you understand how really hard it is for Noah and for us, when it comes to these situations. He is such a trooper about it every single day when it comes to his Diet.

Thanks,
Cathy

CoNfUsIoN

2009-12-10T16:42:00.000-08:00

I just met with Noah's first grade teacher....Can I just sit and cry for a minute? I feel frustrated today.....and sad.........and discouraged!

Last year Noah met several times a week with the resource teachers to provide additional educational and language support. At the end of the year, to my surprise, those great teachers informed me that Noah no longer qualified for extra services. His grades and his one-on-one resource testing showed scores higher than what he needed to qualify for those services. I was more than upset. I knew he would need support this year or he would begin to slip down the ladder of academia.....
Overall...something is missing for Noah. He does well one-on-one. But throw him into a classroom situation and apparently things are not going well. He wanders around when he should be in his seat. The teacher will sit with him and give him instructions. As soon as she walks away, he will just sit there and look around. He can't remember or chooses not to remember all of the instructions.
I think there are a few things happening....1. He is cute. He is the size of a 3 year old and the girls love that cute little face. So they help him like a they would help a toddler. He will "let" them do his schoolwork anytime. 2. TOPOMAX (dopomax) - causes short term memory issues, word finding issues and slows processing time. 3. Slower processing + short term memory issues = inability to hold long stretches of instructions, story content, etc. resulting in behavioral issues.
Not only is all of this going on but Noah is young in his life experience. He basically missed two years of his life due to seizures. He never experienced all of those environmental influences that a 3 & 4 year old experiences. He can't make the natural learning leaps and cultivate new first grader ideas because he missed those times.
For example - he still draws stick figures. Actually, he has added a body now. But, still no neck. Most first graders notice what others are drawing around them, make the connection with how they are drawing that figure and begin drawing more of a body with neck, arms, legs and feet. Noah is still drawing chicken type toes. Unless someone tells him how to draw a body and draws with him for a while, Noah will just continue on with his stick people.
I realize that I can no longer depend on the school to test and evaluate and help Noah. But you know what? I was hoping they could at least tell me what specialists I need to get him in to see. We have a great school. With great specialists. But they are overloaded and it'll be until at least the end of January before their evaluations are done and Noah receives additional help at school.
I know he needs to have an Auditory Processing Disorder evaluation done. He has to be 7 yrs old for that test. Waiting until February.....
What else? What specialists does he need? What help does he need? Where can I turn? I am sooooooo confused....
Excuse me while I sit in my corner and cry for awhile....
Thanks for listening.

To Play or Not To Play

2009-11-27T20:56:00.000-08:00

So..... here is the question..........do I let my Keto Kid play while the rest of us sit down to a meal OR do I make him sit with the family at the table.....while we eat.......and he doesn't...........??? I know it sounds like the answer should be an easy one. Right? Of course you wouldn't force a Keto Kid to sit and watch other people eat their food!!! But, as usual............I have a few more thoughts on this question.

Here is how it all began...Yesterday, at Thanksgiving Dinner I wished I had taught Noah to come and sit with the family for some of our meal. I wanted him to pray with us, listen to the conversation, laugh with us and be around the family Feast table. How selfish am I? I wouldn't want to sit around a table and watch my family feed their faces with food that I can't even eat.

First of all, Noah's afternoon meal falls at 3:45pm. The large family dinner didn't happen until 5pm. It wasn't at my house and I wasn't in charge of dinner. So, the timing wasn't my choice. My family, all 14 of us, sat down and joined hands in prayer. I really wanted Noah to join us but he was nowhere close to the dinner table at the time. My husband and I were tucked on the back side of the long table with virtually no way to inch ourselves out to go over and get Noah to come and pray with the family. Not only that..............Noah was being a fusser boy!!! He put sunglasses on and began giggling during the family Thanksgiving Prayer offered by my 90 year old grandfather. Although I really should have been listening to the prayer, I was laughing inside about how funny Noah was acting and torn because he should have better manners than to be so silly at dinner. Soon after the prayer was finished, Noah kept calling loudly to me, to my husband or to his grandpa - Over and over and over!!! Such a buggin' boy sometimes! My husband and I kind of zoned him out and tried not to acknowledge him after we had told him we would help him after we ate. But apparently it really bothered my step-Mom and she kindly set him up with some legos. That occupied him for a bit but still.....part of me really wished I could have incorporated him into the Thanksgiving Feast a bit more....

There has to be some balance with teaching Noah table manners during a large family event, requiring his participation in the non-food moments of dinner while at the same time respecting his need to not sit and watch everyone else feed their faces. I didn't manage it well this holiday... guess we'll figure it out for Christmas!!!

Love my Keto Kid!

Quick! Hide the Drugs!!

2009-10-19T10:34:00.000-07:00

A parent of an epileptic child has to be great at disguising meds to get their kiddos to take them everyday!. It's unbearable to fight day after day to get your little one to take their meds. Unfortunately, Keto Kids can't have the sugary yummy kind of meds that children on a normal diet consume. Keto Kids' meds tend to be bland, powdery and some are a bit smelly.

Hiding meds can be tricky! At eight months of age, Noah began on Phenobarbitol. At one year of age he had been switched to Depakote. Six months later, Noah began 18 months of Keppra eventually transitioning to Topomax. At one point, Noah was on an all-in-one supplement powder (Nano VM)that had to be mixed in water. It had a gritty texture and the flavor wasn't any better. He currently takes many many supplements, which have been challenging in their own way (Polycitra, 500mg Calcium tablet, KPhos Neutral tablet, LevoCarnitine, Bugs Bunny Sugar Free Vitamin and one brazil nut each day - a total of 11 pills per day + the liquid polycitra).

Here are a few ways that we have hidden meds over the years in order to get Noah to take them everyday...........

Open Depakote Capsules - Sprinkles in mouth - Juice (keto friendly) chaser to wash it down!
Before the diet - Depakote sprinkles in applesauce.
Tablets crushed - hidden in applesauce, ice cream, yogurt (keto friendly and also before keto)
Nano VM - undisguisable!! We ended up just pouring the powder in his mouth and chasing it with juice! Dropped it later because it didn't work for him.
Keto friendly - Crushed tablets mixed in with oatmeal.
Infant - liquid dispenser forced into the very back of their mouths. Followed with milk sippy cup
Keto friendly - Peanut Butter/butter mixed with crushed tablets
Before diet - Crushed Fruit Loops/Trix/Fruity Pebbles mixed with crushed tablets and eaten with a spoon in dry form.
Keto friendly - crushed tablets mixed with smashed strawberries on top of Keto Cheesecake
Keto friendly - Scrambled eggs with butter and smashed small bits of tomato (like salsa). We crush the tablets, scatter them lightly on top of the eggs but under the butter and tomato.

Hopefully some of these ideas can help you in disguising the meds for your kiddos! It's tricky! It's not fun to fight this battle either! But, again, it's one of the many battles we choose to fight to help out our Keto Kids!

Some good news...........Once Noah hit 5 years old, he began taking all of his meds like an adult! No more hidding the meds.

He pops pills better than I do now! Yikes!
Have a sunny day!
I love my Keto Kid!

THE AMERICAN EPILEPSY OUTREACH FOUNDATION

2009-10-06T09:05:00.000-07:00

“I am now pledging to change the face of epilepsy. As a result of the frustrations that I faced daily and the lack of information available, I have created a place–which I hope will become a community–where you can learn about epilepsy, share stories and ideas, and offer support to others facing this debilitating, often chaotic, disorder. “ Erin Leyden, Co-Founder & President of Epilepsy Outreach

I had the pleasure this week, of talking with Erin Leyden. Erin and her husband, Patrick, along with Patrick's sister, Anne Marie Clancy Co-Founded The American Epilepsy Outreach Foundation. (http://www.epilepsyoutreach.org). They were determined to help other families whose lives had been turned upside down by seizures and create a supportive place in which those same families could become educated about epilepsy. Their son Emmett's life was touched by epilepsy when he was 2 ½ years old. His story is beautifully documented on the organization's website. I was in tears viewing it. I was touched by the openness with which they shared their experiences. I am so grateful to have had the chance to talk with Erin and learn more about the Epilepsy Outreach Foundation.

The American Epilepsy Outreach Foundation “is committed to raising the public’s awareness of epilepsy through advocacy and education” as well as to provide support to family's whose lives have been impacted by epilepsy. They have done an excellent job of providing a vast amount of information on epilepsy through their website, sponsoring fundraising events (Annual Change the Face Race), providing access to professionals for answers to questions about epilepsy and providing resources to assist and support families facing lives with epileptic challenges. In fact, Epilepsy Outreach will send a Ketogenic Starter Kit to new Keto families upon request. The Starter Kit includes a digital scale, a general list of acceptable Keto foods, a binder, spatulas and some Keto friendly food samples. To request a Ketogenic Starter Kit, contact the Outreach Foundation from their website.

How can you get involved with Epilepsy Outreach? How can you help them educate the world about epilepsy? Go to their website, click on the “Get Involved” link at the top of the page and choose one of the many different avenues available to connect with this amazing foundation! You can enter your child's story, which like Erin's, could help other families that are searching for support. The website offers brochures and posters that will help in your effort to educate your family, neighbors and teachers. FACES (Friends Accepting Classmates with Epilepsy and Seizures) is also available through the website by request. It is a 45 minute presentation given to 5-8th graders, teachers and staff educating them on epilepsy and basic first aid for seizures. Please drop by the site, read up, educate yourself and get involved!

Most recently, Erin has been working diligently on their next fundraising opportunity for Epilepsy Outreach! On Thursday, November 5^th, at The Providence in New York City, the Epilepsy Outreach Foundation and the Lennox Gastaut Syndrome Foundation will be hosting a Helmet's for Hope Gala!

http://www.epilepsyoutreach.org/2009.11.05-helmets-for-hope-gala-in-new-york-city.html

If you're anywhere in the area, this Gala is a “must do!” The night will include a cocktail hour with hors d'oeuvres, and a sit down dinner. Celebrities and professional athletes will be in attendance as well as a fun auction which will include autographed helmets from professional sports teams. I can't think of a more beautiful evening or a better way to contribute to the Epilepsy Outreach cause. Make sure to stop by if you are close to NYC in November. (Wish I could be there! Erin - We need to set one of these events up on the West Coast!!)

Lastly, Erin wanted to get the word out about connecting your local epilepsy support groups with the Foundations website. Please contact Epilepsy Outreach and give them the information for your local epilepsy support group. A link will be added on the Outreach website that will enable others to find and attend your local group!

“Our passion is real, our eyes are open and we are willing to change the face of epilepsy. Journey with us on this most worthy cause.” Anne Marie Clancy