School Has Begun

Noah's first day in the first grade was a great experience! He had his Spiderman shirt & his Super Hero backpack! All set!
His teacher is phenomenal! I'm so impressed with her willingness to not only teach my child but to keep him safe. I purchased a couple of books for her to use in the classroom. The first was "Taking Seizure Disorders to School: A Story About Epilepsy ." This is a cute book that attempts to simplify the seizure discussion for first graders. It's main focus is to explain what a seizure is and what it looks like. However it also emphasizes that the epileptic child is just like every other kid. They like to play on the playground, go to science, work on their math and everything else the other classroom kids enjoy doing each day. I think the book allows for the teacher to skip some pages that don't apply to that certain student. For example, Noah's seizures are tonic clonic, so no reason to read about focal seizures to the other first graders.

The second book was That's What Friends Are For. I love this little book. It tells a story about an elephant that hurts his leg and can't walk the distance he needs to travel to see his cousin. Each one of his friends comes along and gives him advice. The Elephant says "Thanks" but none of the advice will work for him. Eventually the Lion teaches all of the animals that friends don't just give advice, they actually help each other. It was a really sweet read! One that is easy for a first grade class to understand and put into action.

Noah's teacher taught the kids "Noah's Emergency Plan" on the very first day! If the teacher says those words, the students will immediately stand up and go to the room next door. The first child in line will communicate what is happening in their classroom to the other teacher. Noah's teacher will stay with him as long as necessary. The best part is.... They are practicing the plan.

By this coming Monday, all of the teaching staff at Noah's Elementary School will be fully seizure trained. The District Nurse and I have trained Noah's teacher and 5 other support staff on the use of his Diastat as a separate training class. In addition, the school has developed a plan so that someone has their eyes on Noah at all times - recess, lunch, lunch recesses, etc.
What a wonderful school and teaching staff we have for Noah! I love it. It is beyond my comprehension how far our school goes to help my child. Ultimately, he is my responsibility and I really expected to have to be at the school with him much more. Our Principal just does such a great job with these Special Needs Kids. Not only is a great for my child but it is a really good thing for every day kiddos to have experiences with kids that might be a little different than themselves.

Love our School!

Awakenings

My child has failed four different meds. He has been through side affects - the sleepiness, the grogginess, sadness, anger, crying, irritability, bone marrow supression, elongated seizure duration....

Because of all that he has been through, I appreciate these moments of AWAKENING. Noah's in one of those times right now. The "why" questions continue to pour out of him. He is expressing his unhappiness with his brothers when they aren't being fair. He is remembering past events so much more clearly.

Today Noah came in the house carrying this huge pine cone that he found on his walk with his big brothers. It was really heavy and made marks on his little arms. But he was sooo proud. He kept talking about it's color, how big it was, where he found it and where he wanted it to be kept.

I love these moments!

Does your Keto Kid sleep in your bed? In the beginning of Noah's epilepsy, he slept in his crib. Until, around 2 am one morning, I heard a seizure. I don't know how I heard it, it was silent. But, I woke up suddenly, walked into his room and he was seizing face down into his sheet. I was never the same again.

I believe the parent of an epileptic child sleeps in a lighter phase. We have to. We have to hear our child throughout the night.

Noah has been doing incredibly well on the diet. If we make it until September 5th with no more seizures, we will have had only 2 seizures in the last year. For us - a miracle. From 150 down to 2. The tricky part of our situation is that his seizures seem to be during that delicate time of sleep for all epileptics - just after dozing off or just before waking.

As a result, he is back in our bed. We put him to sleep in his bunk bed with his brothers. (Baby monitor on). As soon as my husband and I go to bed, we bring him in with us. I've struggled with the whole situation because I want him to experience normalcy as much as possible. I want him to have that fun time with his brothers - chatting after the lights are out. They open up to each other, chat, laugh and fall asleep. But, I don't feel like my other boys should have the responsibility to hear/feel a seizure while they are sleeping. I don't want their bodies to adapt as mine has to a lighter sleep that detects seizures.

Our solution was to bring him in to our bed again. I let you know how it goes. At least he is incredibly snuggly! Could do without the teeth grinding though!

Make and Takes

My sweet sister-in-law, Marie, is one of the 50 Power Mom Bloggers (Nielson Ratings). While visiting home in July, Marie asked me to do a guest spot on Special Needs Kids-Epilepsy & Keto. Drop on by Marie's blog and check out my post. It was fun & I hope it gets the word out about the Diet. I would do just about anything to spare another child and family from seizures....

http://www.makeandtakes.com/living-with-a-special-needs-child

Smiles!
Cath

Preparing for School

Noah starts 1st grade in a few weeks. Although, I'm a bit nervous to place him in the care of others from 8:30am - 2:30pm, I know it will be a great thing for him. He loves school, loves friends and really enjoys the independence that accompanies attending public school. Here are a few of the steps we've taken to ensure Noah's safety and help us to feel confident in the care he will receive at school:

1. 504 Mtgs. - We meet with the Principal, the 1st grade teaching staff as well as those teacher's whose classrooms are nearest to Noah's room, the district nurse, music and science teacher, teacher's aides and me. I wrote all of my concerns out prior to the meeting and emailed them to his 1st grade teacher and Principal. I wanted to have "a plan" laid out for handling the Diet as well as any possible seizure activity. (classroom, playground, lunchroom, music or art class, bathroom, p.e., library, etc.)
2. Letter written to the parents of the children in Noah's classroom that explains both his epilepsy and his Diet. The letter requests that the parents never feed Noah anything, that their children not give food to Noah or other children and that if Noah has a seizure at school, they are more than welcome to call and ask any questions in order to help their child deal with what they have experienced.
3. We adjusted Noah's meal times to allow him to have a small snack during 1st grade snack time. His lunch meal will also take place during the school lunch period. I was able to adjust his medication times so that he never has to receive meds at school. That is a tricky situation, so I'm glad we were able to adjust his med time.
4. I'm searching for just the right book that can be read to Noah's first grade class explaining epilepsy and helping the other children to understand Noah a little bit more.

Part of me is sooo nervous that another child with make fun of or be mean to my child. But, there are plenty of sweet first graders that will be kind to him, watch out for him and treat him with respect. He is really excited for first grade! I'm excited for him.

Here we go....
Back to School!

Starting Ketogenics

A decision to begin the Ketogenic Diet with your child is exciting but overwhelming. It seems like a huge undertaking and involves big changes for your everyday life. Yep, not just for your child but for you and everyone in your household. It's risks are manageable and carefully watched over by your Neurologist and Dietitian. It works in 2/3 of the patients to varying degrees. That figure in and of itself is amazing! Ketogenics helps parents to feel empowered in the management of their children's epilepsy. You will make a difference!
It requires you to be organized, detailed, specific in creating meals, shopping, preparing and weighing every item of food in your child's world. It is overwhelming in the first few months as you help your child and entire family to adapt to this dietary structure. But it is completely do-able. If successful, it will be the best thing you've ever done! Ketogenics literally saved my child's brain and his life. It has been worth every difficult moment! Just jump in and give it the best you've got! Your child deserves nothing less!

HERE ARE SOME HELPFUL TIPS FOR NEW KETO FAMILIES

Preparing before you enter the hospital.

• Purchase some simple foods that your child already enjoys and can be worked into the Diet - butter, fresh berries, heavy whipping cream (check w/dietitian to determine which to buy for fat content), bacon, Hebrew National hot dogs, cinnamon, Hormel little sausages, cheese sticks, cheddar cheese, nuts (macadamian, peanuts, pecans, walnuts), eggs, cream cheese.
  
• Check on-line at Bickford Flavorings. This company offers sugar free flavorings. Our most commonly used flavors are vanilla, chocolate and maple
• Kool Aid - Some flavors are acceptable for Keto kids. Black Cherry and Cherry are two that have worked well for us. Check The Charlie Foundations' Keto food list for others. Remember that you will be purchasing the KoolAid packet only. It holds only the flavoring and no sugar. Once you mix it with water, you can add a sweetener approved by your dietitian.
  
• Presentation is key.....Use small plates/bowls to help their smaller portion sizes look better. Always have a smile on your face when preparing and serving your child's food. Some craft stores, like Michael's, sell tiny tinfoil candy/muffin wrappers. We use these almost daily. I melt the butter/oil in his meal, add a tiny bit of cinnamon, pour into the wrappers and freeze. We call them "butter candies." Presentation is everything.
  
• Remember that we all have emotional connections to our food. Your child has eaten "freely" from birth. Not only does his/her body have to adapt to getting its energy from a diet of 90% fat but the brain has to release those connections and the freedom of dietary choice. It's very hard. Expect your child to strive for control, act out and mourn the loss of their old way of eating. Eventually, your child will forget what "sweet" tastes like. You will all get used to the smaller and yet much more calorically dense meals.
• When you leave for the hospital - Leave Behind Every Nutritional Ideal that you have held your entire life. "The Four Food Groups"...........Forget It! Remember 90% of your child's intake will be from fat. You don't have to balance the fruits and veges. His/her nutritional needs from those will be met in different ways. Fruits become highlights. Veges become variation. Just prepare meals that meet the guidelines and that will make them happy.
  
• Family/Friend Relationships can be tricky in the beginning of the diet. No matter how close you are with your extended family or your friends and no matter how supportive they have been, it can be difficult for them to really grasp the benefits of ketogenics. They are not in the daily trenches of it and yet they will see the crying and the tantrums that go along with ripping a child away from his/her normal food habits. It can be tough. Just continue to reassure them of the positive possibilites with the Diet. Let them know the boundaries right away. Make it completely clear that if they give your child ANY food, it could cause seizures. Be honest, be strict and be clear!
• For awhile, avoid eating desserts in front of your child. Do not allow family members to "pig out" in front of your Keto Kid. Until the new life patterns of eating are solid for your Keto Kid provide some support by pointing out dietary decisions that you make in your own life. "Mommy doesn't eat cookies anymore either. They are too much sugar for my body." or "You lucky kid, I wish I could eat cream cheese like you. I love it but it is too rich for me." Make sure that if you're at a family event (birthday party or school picnic, etc) that one parent skips the yummy dessert stuff and helps the Keto Kid to stay occupied away from their family.
• It's okay to stick with only a couple of meals that your kid likes. You don't have to create a new cookbook. Creating a few "favorites" and using them for as long as possible is great. The reason it is great is because you want to eliminate the variables that might negatively affect seizure control. In the beginning, if your child's Keto diet is simply constructed, you can more easily work with your dietitian for seizure control. You can automatically rule out a food conflict. Some of the adjustments that will be made are ratio, caloric intake, water intake, supplements, etc.
• Stay as pure as possible in the food choices. Avoid nitrates, aspartame, maltodextrin. For some children, these are seizure sensitive triggers. It's better to start with all natural items. (It is possible to buy nitrate free bacon;>)
  
• Expect your child to be lethargic as their body transitions into Ketosis. This can take up to two weeks. You should see an "awakening" and "alertness" in your child's personality. We saw this within the first week. Report any throwing up to your dietitian immediately. One meal purged is nothing to freak about but more than one in a row can cause problems. A child that becomes too ketotic will become lethargic and continue to throw up. This is not good and you would immediately call your neurologist or Keto dietitian on call at your hospital.
  
• Take good notes. My post on 1/28/08 is a sample of the tracking sheet that we use in my home to note specific gravity, urine ketones, meals, seizure activity and extra notes. Create one or copy and print mine. Purchase a three ring binder to organize your ketogenic life. It really helps.
• Build a good relationship with your dietitian.
  
• Be patient with yourself. It's a huge change. Take one day at a time. One meal at a time.
• Lastly, find some kind of Keto support. Is there a successfull Keto family that lives near you? Ask your Keto Dietitian and Neuro for a reference. I love the Keto Yahoo group. Someone is always awake in some part of the world and will help you with your questions. It has helped me and I support it by helping other families.

YOU CAN DO THIS!

Trying New Foods

Two years ago, when Noah began the Diet, I remember feeling "freaked out" that he wouldn't be getting his fruits and veges..... a balanced diet..... Finally, our Dietitian said, "Cathy, 90% of his diet is Fat! No matter what little things you throw in there to make yourself feel like it looks more healthy or a little more balanced, his meals will still be 90% fat!" I realized at that moment how important it was for Noah to enjoy his meals. I didn't get hung up on trying "new" foods.

With my other children, I do not design meals according to their tastes. We eat the meal that I fix. In fact, my rule is - Try everything at least once. If I fix a vege you aren't fond of, guess what..... I've got another vege on the table. But if you don't eat all of your dinner, you can't get into the refrigerator the rest of the evening (except for water).

Am I harsh? No ..... I'm just not a short order cook. I proudly took on their food battles when they were younger and it has made our lives much more enjoyable. They try new foods willingly and eat fabulously when we are dining out or at other people's homes. I love it!

Anyway........ for Noah and the Keto Diet, it was all about eating the meal and eating it all! So, I've spent the past 2 years talking with Noah to find out what food he wants. I do my best to put meals together that he enjoys. In fact, this picture shows Noah with his favorite meal. "Noah Ice Cream." It's Heavy Whipping Cream (whipped), mixed with a small amount of melted Coconut Oil, some peanut butter, chopped pecans, Bickford Chocolate Flavoring and a titch of Splenda. Freeze it and serve in a cute bowl or sundae glass. He loves it. It actually smells like a Peanut Butter and Chocolate Pecan Ice Cream.

Recently..........I decided to try some veges and mayo with him. Normally, he cannot stand mayo. It's just not part of his diet (not fighting the battle with the Keto kid!). I sprinkled a titch of powdered ranch dressing to some mayo, sliced some carrots and celery and added some cheese slices to the plate. To my surprise...he LOVED it! He was so proud of himself for trying something new too!

My husband turned 40 last month. We went out to sushi that night to celebrate. My two older boys hadn't had sushi. I'm only a California Roll type wimpy sushi person and over the years I haven't been the best "sushi buddy" for my hubby that loves loves loves sushi! The two older boys loved it! Noah watched the entire meal, our reactions to the boys trying something new, and he loved the colors in the foods that we ate. A few days later, I asked Noah if he wanted to try some sushi. He was ecstatic! I sauteed a few shrimp, added some small globs of cream cheese to each, a few sliced carrots on the plate for color and butter candies on the side. (A butter candy is melted butter mixed with coconut oil & cinnamon. Poured into a small tinfoil wrapper and frozen. I pop them on his plate. He peels the foil off and eats his "butter candy.") He loved the "Noah Sushi" meal. It made him feel confident and adventurous.

I wouldn't worry about variety or balancing the meal or forcing new foods. But every once in a while, try to capitalize on the excitement of an experience to create something new and fun for your keto kid. I was surprised by his positive response. Hopefully you will be too!

**Maybe if I could convince him to eat a meal that Batman or Spiderman ate on a regular basis, he would eat that too;> Hee Hee Hee