Multistix

Like every Keto family, we consistently test Noah's Ketones with a urine test. We use Multistix, which allows us to read both Ketones and Specific Gravity. Usually, I purchase the Multistix through the pharmacy at Children's Hospital but our insurance didn't cover them. The cost totalled $90 per bottle. Each bottle contains 100 sticks and we test Ketones twice a day. To save money, our dietitian suggested cutting the strips in half lengthwise. Reading the sticks takes some practice but once we got the hang of it, cutting the sticks in half and reading them became no problem.

Most recently though, I thought I would try to save some money and purchase the Multistix off of the Internet. I bought a bottle for $15 with $5 shipping. The strips are similar to the ones I normally purchase but the label on the back has slightly different colors for Specific Gravity. In fact the colors on the label to not correlate to the colors on the stick. The stick color changes are accurate with the normal Multistix bottle labels from the Children's Hospital pharmacy. Weird! 

I'm still on the search to save money on Multistix so if anyone has any ideas that would be great! I'll post when I figure this one out. I'm sure I can find some good Multistix for less than $90 a bottle. For now, try cutting them in half. It's a money saver!

Grumbling Over Grease Stains

Lately I've been grumbling over the grease stains. Grease stains are not only prevalent on my Keto Kid's clothing but on my clothes too. It's all the prep work that causes grease on my clothes. Uuugghh!

I asked the Yahoo Keto Moms and Dads how they handle the grease stains or if they just keep tossing clothes in the garbage. Here are the ideas they gave me:

• Dawn or other grease fighting dishsoap. Place a small amount on the grease stain, rub and toss into the washer.
• Ammonia (not sure how this one works) Please remember that ammonia combined with bleach products can be a deadly combo. Don't combine the two!
• Spray-N-Wash Gel mixed with Resolve.
• Tide paste (water & tide) rubbed into stain. Put clothing article in plastic bag overnight and wash with regular laundry.

Thanks for all of the input. Good luck with all of your oily Keto stains! Any other ideas? Post em!

Love my Keto Kid!

Halloween

HAPPY HALLOWEEN(a bit late)

Sorry to put my *Halloween Hints* up a little late. Actually, I would love to hear everyone's Keto Kid Halloween experiences. So please leave a comment if you feel comfortable doing so.

Noah loves Trick or Treating with his big brothers! I have to admit, I felt a little sad when the boys came home afterwards, dumped their bags out & Noah had received 2 small toys in his entire boat-load of candy. Luckily, I had tons of plastic frogs & bubbles left over to add to his cheap toy pile. He loved it. Once the boys sift through their candy, Noah gives all of his to Daddy, Daddy gives him $20 & we take him to Toys R Us to buy the toy of his choice.

He loves this method! Hope to hear some of yours!
I love my Keto Kid!

Scales

The scale you choose is important! We received our scale from our Keto Dietitian during our hospital admittance to begin the diet. The most important thing is to make sure your scale measures to the tenth of a gram. As the battery gets low, the weight will gradually change without a change in the item you are weighing. Be sure to purchase a model that has both battery & plug-in possibilities. Good scales are important to exactness in the diet! Good luck & good weighing.

Candlelight Dinners

Kara, another Keto mom, uses candles each night at dinner. Kara has twin girls. Only one of the twins is on the diet. Can you imagine the challenge this brings into Kara's family's keto adventure! I'm strengthened by Kara's creative example and undeterred focus to help her child.

Candles at your dinner table can help your Keto kid!

Kara took her daughters to choose a dinner table candle. At dinner, the twins sit on opposite sides of the table and the candle is lit. The beauty of it isn't found in the candlelight itself but in the lights' brightness as it blocks the twins' view of the other's dinner plate.

Give it a try. It might mean a happier keto kid at the dinner table.

Back To School

My kids went Back to School at the end of August. Noah began Kindergarten. I'm proud of myself for actually leaving the parking lot. Actually I had nightmares of me sitting in my van crying while Noah was in class. Anyway, I didn't realize the Keto Quirks of having to send a meal with Noah to school. We changed his eating schedule to accommodate the classroom snack time. Another tricky element is that his Kindergarten Classroom is a "Nut Free" Zone. His current school Keto meal preference is cream, raspberries, pepperoni & cream cheese sandwiches. The last quirk to deal with is lunch containers. Most are too big & make his little Keto meal look even smaller. Some plastics leak - a big "no no." All need to be easy enough to open that Noah can open them by himself. The Keto Yahoo group members had lots of great ideas but the containers above were my favorite. They are from Bed, Bath & Beyond. The lids are cold packs! Brilliant for keeping that cream cold. They seem simple but a great solution.

My prayers are going out for all of the other Moms & Dads getting teary as you leave your epileptic child in the care of his/her school staff. Taking that step, trusting their teachers & getting in your car is overwhelmingly huge! But think how great it is for our children to develop some independance!! Awesome!

I love my Keto Kid

Stockin Up

Vacations, School Lunches, Appointments, Piano Lessons, Visiting Grandma.....

All of the above situations legitimize the need for Keto Families to stock up on small containers. I take a small lunch box or cooler everywhere with Noah's next meal.

Watch for sales because they are expensive. Try not to keep reusing them forever though. Plastics breakdown. Our Keto kids definitely don't need that too.

Love my keto kid!

Hot Dogs

Hot Dogs are a Keto staple. Hebrew National seems to be a great brand. Not the low fat of course. Noah can have a pretty good sized hot dog - lots of fat. My sister in law had some cute ideas about fixing hot dogs. Octopus Hot Dog, Worms Hot Dog - Hot Dog on a stick. I'm going to try the octopus for sure!

Noah, Ketones & MCT OIL

If you've kept up on my blog, you know that I've been on the quest to stabilize Noah's ketones at the 160 mark. I'm not happy with the 80's that have been taking over since January 08. We finally settled on using the Polycytra K - Potassium based because of the extreme thirst issues that occured with the Sodium based Bicytra. The original precription was for 12.5 cc twice a day. I figured out through trial and error that he can only handle 5 cc at a time without freaking out his hydration levels and dropping the ketones. No explanation for the interaction. It's just Noah. So now he drinks 5 cc with each of his meals (5 per day). Good thing he is fantastic at taking meds!! Thanks for all of your emails about this Polycytra problem!! It made a huge difference!

The other major adjustment has been with Noah's water intake. Along with the Polycytra being divided up throughout the day, his water also has to be divided. He has to consume around 30 ounces of water per day. We don't want kidney stones or other issues. Noah can drink no more than 2.5 ounces each hour. Any more that the 2.5 ounces and his ketones drop. I know, I know..... blood ketones are not diluted by water. But, I believe between the Polycytra K & the water, something drops his ketones. The only way we've stabilized him back to 160 is with everything divided up.

Crazy!!

OK - MCT OIL - We're using it for Noah. I've learned to only add it to a couple of his meals or his tummy gets upset. We already use Coconut oil. So, between the two we're keeping Noah's ketones DEEP!

Here is a write up on MCT OIL from one of the many websites talking about Medium Chain Triglycerides. Thought you might be interested....

"MCT's have been shown to be a good addition to anyone's way of eating. It promotes weight loss. Improves appetite control. Is beneficial for exercise and athletic performance. Improves thyroid function. Improves heart health. Improves your immunity. Improves brain health when used in conjunction with a ketogenic diet. Jump starts ketosis when following a typical Atkins's type diet. Thus decreasing the induction side-effect of the dreaded "Atkins Flu". Assists in calcium, magnesium and amino acid absorption in people with malabsorption issues--think WLS.

Medium-chain triglycerides were first used in the mid-1900s to reduce seizures with the help of the Ketogenic Diet. In the 1980s, MCTs became popular in sports as a substitute for normal dietary fats or oils. They quickly became a favorite energy source for many athletes, such as marathon runners, who participate in endurance sports. These athletes require a quick source of energy, which is readily supplied by carbohydrates. However, diets high in carbohydrates may cause rapid increase in insulin production, resulting in substantial weight gain, diabetes, and other health problems. MCT is also a form of fat; therefore, it is high in calories. MCTs do not cause weight gain because they stimulate thermogenesis (the process in which the body generates energy, or heat, by increasing its normal metabolic, fat-burning rate)."

SIBLINGS

One of the things I worry about the most is the toll epilepsy takes on my Keto Kid's siblings. My other two children are boys - 8 & 10 yrs old. Simply put, I want their lives to have some semblance of normalcy. For several years ambulances, emergency medical care, leaving stores & movie theaters, canceled play dates, shuffling them to neighbors as we're rushing to the hospital - was routine. Actually the routine always began the same way.......Noah breaks into a seizure, Griff grabs my cell phone & calls Dad, Isaac watches the clock & I hold Noah while suctioning his saliva out to prevent suffocation. My boys have been part of this routine since they were 4 & 6 yrs old. I'm incredibly proud of them.

The Ketogenic Diet has not only given Noah his life back but it has also given Griff & Isaac lives more similar to their friends' lives. Not every aspect of epilepsy is negative. Because of their experiences with Noah, my older boys are incredibly compassionate and unafraid of befriending other children with special needs too. This past year, I watched Isaac become a friend to a boy with Down's Syndrome at school. It was an honest friendship, sweet & caring. Griffin also had a sweet friend with a genetic disease that passed away during 2nd grade. Griff earned his "wheelchair" driver's license at school and pushed Kieran around everywhere. Just before Kieran passed away, the two did a Science Fair project together. Kieran was never able to talk but Kieran touched Griff's life and Griff touched Kieran's life too.

I believe our children were sent to us prepared for the challenges that face our family. All three have faced epilepsy with strength and understanding. The Diet doesn't just affect Noah - it affects all of us. Here are my suggestions for helping your other children cope (I'm just a Mom - not a psychologist - so I'm not an expert).........

1. Make sure to take one-on-one time with your other children. We have Mommy-Isaac or Mommy-Griff dates. Dad also takes time with each kid for a one-on-one every few months.

2. Trust them to help with the epilepsy. They can and will do it and will be stronger, more compassionate people because of it.

3. Provide ways for them to help your Keto Kid with his/her meals. Create opportunities that allow them to connect to their sibling through the Diet.

4. Kitchen Opened - Kitchen Closed: Talk to each child about their goals (if they are old enough). Explain to them about proper eating and how it will help them reach their own goals. Face it, we all should be "eating for a purpose." We should all be on special diets. (Some more stringent than others) I love the Ketogenic Diet for this reason: It has shown me, in a very real way, that food affects our brains and bodies - positively & negatively. Use this knowledge to help all of your children and not just your Keto Kid. My kitchen is not for grazing, it's open at specific times to support the nutritional needs of my family & then it closes.

5. Food is not the foundation of your family!!! Make meal time about the relationships not about the food you're eating. Talk, laugh & enjoy the company of your family including your keto kid.

6. Tell the siblings how much you appreciate their help and how much you admire them for the compassion and love they show to their epileptic sibling. It takes a special kid to be a sibling to a special needs child.

A special conversation happened in our home a few months ago. The older boys asked if we were going to have any more kids. I said "Well, what if we had another child and that baby had seizures too?"

"That's okay Mom. Heavenly Father knows we're good at handling epilepsy! It would be great."

Isn't that wild? What an answer!! It blew me away. I think we're done having kids anyway but their answer was a "tender mercy" from God. It took away that nagging worry of - "Will my other children be OK or is this epilepsy burden to heavy for them to bear?

Just some thoughts.....hope they help.
Love my Keto Kid. Love ALL my Kids!!
Cath

A Way To Beat The Heat

Noah loves snow cones! It keeps him cooled off and it's a great treat. We don't add any flavoring, it's just the shaved ice. But, he doesn't seemed bummed that it's missing the flavoring. He's really into being in charge of the ice shaving. I help him a little, but he does most of the work.

Have fun with your Keto Kid. Remember, eating shouldn't be the focus of any family, it's the time together that matters. Try shifting the focus and let your Keto Kid get involved!!

Stay cool! I love my Keto Kid!

My Kool Keto Kid

Summer is almost here! School is almost out! You all know that my Keto Kid has a genetic mutation known as GEFS+. He, like many other sodium channel epilepsy kids, does not regulate body temperature well at all. For several years, I just kept him inside the house. But, he is getting older and needs that physical exercise as well as the joy that comes from experiencing summer! A few weeks ago, at the end of Little League Season, the weather here in Northern California was HOT!! I'm talkin' 103 degrees! Yowza!! To keep my KetoKid Kool, I gave him a squirt bottle. Okay, so a few other spectators got squirted here and there. But, for the most part, Noah just kept himself cool. So if your little kiddo needs some cooling off this summer - hand him/her their own squirt bottle and let them experience summer.

A New Yogurt

Another great invention!! Dannon Light & Fit Carb & Sugar Control. It is sooo yummy! Noah loves it. We purchased the strawberry flavor as well as the vanilla. Both are creamy and terrific tasting. The best part is that even on the 4:1 ratio with only 1.9 grams of carb per meal, my Keto Kid can eat a lot in one meal. Log onto the Dannon website at www.dannon.com to read more about this yogurt that is perfect for a Keto Kid. The website even has a store finder. Although many of the grocery stores near my home carry the Dannon Light & Fit line of products, they did not carry the Carb & Sugar Control. So, make sure you check the store finder on their website to find a location that sells the Carb & Sugar Control. Noah will be eating it not just as yogurt but for smoothies and freezing it like pudding pops for the summer!

P*O*P*C*O*R*N

Popcorn is a major meal staple in Noah's diet. It's a great way to get the butter and coconut oil into his body too! Noah's popcorn meal consists of popcorn, butter, coconut oil & parmesan cheese. It's fun to have my child help me prepare his meals. He can measure out the unpopped popcorn and pour it into the popcorn popper. Popcorn popping is always facinating. Of course his meal is accompanied by a cup of cream too.

One more great thing about popcorn..... it helps to keep a Keto Kid "regular" too.

I love my Keto Kid!!

THIRST

How do you deal with water and the diet? It's strange isn't it? We monitor not only their food intake but their water intake too? Too much is bad. Too little is bad. Uuggh!!! I've been posting less because Noah's life (= my life), has been crazy lately trying to find out what triggered those 3 breakthrough seizures. Meanwhile, as I'm trying to figure out if Polycytra is the culprit or the NanoVM, Noah started crying a lot and begging for water.
We decided to remove the Polycytra as the NanoVM absolutely has no carbs. For those of you that have a child on Topomax & the Diet, you probably know this stuff. Topomax is a carbonic anhydrase inhibitor. It attaches to the bicarbs in Noah's body and causes him to pee them out. Loss of bicarbs results in renal stones & osteoporosis. Not good. So, Polycytra or Bicytra are liquids that bring the body back out of acidosis to a more alkaline state by flooding the body with bicarbs. I'm sure this isn't the way a physician or dietitian would describe it. But this is how I understand it.
Anyway...... Our dietitian figured out that we could give him 3/4 t. Baking Soda, four times a day as a substitute for Polycytra. We went with that last Friday. Fast forward to Sunday and Monday...... Noah is chasing me around all day, weeping and begging for water. "I'm thirsty" became his constant wail. His hydration level was 1005, which is way too hydrated. This is similar to what happened the previous month on the higher dosage of Polycytra and during his illnesses. Whacked out hydration levels and thirst. The Problem was sodium. Too much sodium in the Polycytra and too much sodium in the Baking Soda. The sodium didn't cause the breakthroughs but it did exacerbate his thirst and caused hydration problems. 30 ounces of water for Noah is plenty but on those days, he could have drunk 60 ounces easily.

For Noah - more hydration = lower ketones = breakthroughs.

The search continues!! Right not we're trying to decide whether to wean him from the Topomax. I'll keep you posted! Thanks to Karen, our dietitian & Dr. Brown, our neurologist, for not giving up on Noah and working with us day-in and day-out!!

Stay vigilant. Don't give up! The diet can change your life. If you do have to let go of the diet, at least you will be able to move forward knowing you gave it your best shot!!

I love my Keto Kid.
Cathy

Searching for Solutions

I've gone through every food, every med and every charted keto note looking for a possible cause for Noah's three breakthrough seizures since the middle of February. Our super dietician, Karen, is really plugging away trying to help me find the culprit.

Yes it could just be that he is a growing child. But, at this point, I'm not accepting that answer. He was ill at the time and that causes the seizure threshold to drop. But he had several illnesses in the Fall that were far worse than these pasts colds without breakthroughs. So, I'm targeting one of two variables; PolyCitra OR Nano VM. Karen doesn't think it's the Nano. Whatever it is, it's wreaking havoc on his Specific Gravity. We are our children's advocates. I have to do the best I can because we don't want to see Noah seizing 150 times a year again.

My keto kid can catch his pee in his own cup! He brings it out to me for his urine test twice a day. How many kids can do that? How about this one...........He swallows three capsules at once with water. My 10 year old just began swallowing one capsule with water this year.

Noah rocks! I'm going to keep searching and fine tuning! We can't lose control now! I'm not going back to the scary & crazy existence we had for three years of GEFS+.

Pray for us!

SLEEP & SEIZURES

It happened again. Another seizure:( It has been a difficult weekend. Friday morning, Noah had another seizure just before waking. April 27th, 2007, February 21st, 2008 & April 18, 2008 - Noah's last 3 seizures. It 's great for him to have had only 3 in the past year. BUT, 2 of those were in the past 8 weeks. I'm not happy about that.

Looking over my notes, the only pattern I can see is a lack of sleep the previous 3 nights & illness on the day of the seizure. He was up about 1 1/2 hrs later than normal the 3 nights prior to his seizure this past week and the same type of situation in February. It's the only thing I can pin down. He's had other illnesses without seizures this past winter so, I'm not going to give into to the "It's just the illness" reason.

Sleep is incredibly important for all kids but especially for epileptic kids. My girlfriend, Kirstin guards her son Nikko's sleep too. Nikko is 2 years seizure free on the diet!! Happy 2 Year Seizure Free Birthday Nikko!!!

Guard their sleep! I'm tightening my reigns on his sleep habits. If I know he'll be up a little later one day, he has to nap that afternoon. It has to happen!! I don't want him to slip back to where he was a year ago. The diet has been awesome for Noah. Please pray for him & us. We are pretty freaked right now.

I love my KetoKid
Cathy

J*E*L*L*O

Sugar Free Jello is one of Noah's favorite treats. I dish some up for him and myself too. Noah chooses the flavors at the store. We enjoy making it together. I let him open the package and poor it into the pan. The best part about Jello is that it's straight Protein. I calculate about 50 grams into his meals that incorporate Jello. Anymore is too much. Too much? That's a foreign concept in Ketogenics. Another yummy Jello treat is to use whipping cream and Jello - freeze into pops. Anyway, we love Jello and now is the perfect time to change up some menus and spring into Summer.

Supplementation

Noah is not only on the Ketogenic Diet, he is heavily supplemented too. Here is his typical daily routine:

• 8:00 am
  
• Breakfast
• 3 - 45 mg. Capsules Topomax
• 1 - Nano VM - Vitamin Packet (vitamin supp)
  
• 2 tsp. Polycitra (helps w/acidosis. Keeps him more alkaline)
• 1 tablet LevoCarnitine (protein supp)
• 11:45 am
• Snack
  
• 3:00 pm
• Lunch
• 3 - 45 mg. Capsules Topomax
• 1 - Nano VM
  
• 6:30 pm
• Dinner
• 3 - 45 mg. Capsules Topomax
• 1 - Nano VM - Vitamin Packet (vitamin supp)
  
• 2 tsp. Polycitra (helps w/acidosis. Keeps him more alkaline)
• 1 tablet LevoCarnitine (protein supp)
• 8:00 pm
• Snack

We began using the Nano VM vitamin/minerals powder in January 08. It replaced the following supplements; Magnesium, Caltrate, Selenium, B6, Bugs Bunny Sugar Free Multi Vit and KPhos.
Be careful with too much supplementation. All of those separate supplements could be too much for their little bodies. Check with your Dietician, Neurologist & Pharmacist about supplementing your Keto Kid. Even vitamins can have a negative affect when used in large doses or when interacting with too many other vitamins.

Nano VM has worked well for Noah. The powder packets are typically mixed with water to make an orange drink. Noah hated the drink and flat out refused it. I tried to explain how important it was for him to take the Vitamin. He came up with the idea to eat the powder right off of the spoon and chase it with 4 oz. of water. That stuff does not taste good powdery but Noah's surprised me! In January, he also began tossing the entire Topomax capsule into his mouth and swallowing them with water. Prior to taking the capsules with water, I opened the capsule and poured the sprinkles into his mouth. But this is much easier. I'm still surprised that he is a great medicine taker. Never underestimate your Keto Kid!!

SPRING & SUMMER BERRIES

Berries are low in carbs. Noah is on a 4:1 protein/fat:carb ratio. So, it's not always easy to find foods that he can eat that will look large in quantity. Berries are yummy and at 1.9 grams of carbs - he gets "a lot" (relative to Keto meals). His favorite meal incorporating berries is:


42 grams Heavy Whipping Cream (w/Bickford's Chocolate Flavoring)
9 grams Pepperoni
11 grams Strawberries
5 grams String Cheese

We planted a ton of strawberry plants last year. Noah loves to go into the backyard, pick a few berries and bring them in to help make his meal. I love the bright colors added to his plate. Berries bring smiles at my house! Try putting berries into your Keto Kids Diet. They go a long way!

I love my Keto Kid!

Tough Decisions

For a long time, I've wanted tot put into writing what it is like to give a child anti-epileptic drugs. For us, we felt that we had no choice but to try the available drugs. The seizures were long and getting longer, didn't always stop on their own and Noah was suffocating during every seizure. I had to carry a bulb syringe in my purse to suck out the saliva that would cause his asphyxiation. It seemed to us that he would die if we didn't pursue the drug option. At the same time, each drug had dangerous side affects. We didn't know the long term ramifications of these drugs. It's the most sickening and helpless feeling. We prayed for God to help us through our decisions. We knew that He could make the best of the worst situation.

Another aspect of placing a child on anti-epileptic drugs is the feeling that your child is one big experiment. Every drug works differently on every child. Side affects seen in one child are not always apparent for another child. In order to find out the level at which the drug works for each child the following protocol is used: begin on a low dose, break through seizures, re-evaluate and increase med. This pattern continues until the child shows unacceptable side affects. It is incredibly discouraging.

My son is still taking Topomax in addition to the Ketogenic Diet. We don't know if the success that he is experiencing is caused by a synergistic interaction between the med and the diet or if it's the diet alone. But, at this point, we won't muddy the waters by trying to figure it out.

My prayer is that you feel support from others during the heart breaking experience of choosing meds. God is there to provide comfort. He works through family, friends and yep - medical experts to help you and your child. Consider the options, research everything, pray and listen.

Lab Work

One of the joys of an epileptic keto kid is the constant lab work. At least once a quarter Noah has blood drawn. I remember the small infant wail when he was a baby. Needle stick-wail-whimper-nursing to sleep. Age 1 1/2-3 yrs was crying, screeming and pulling his arm away. Do you blame him. But for the last two years it's become no big deal. He is a little sad about it but only says "ouch" and wants a sticker. Noah is a great sport.

The real reason I wanted to blog about Lab Work is to make you aware that you can ask for a copy of all of your child's Lab Work. I started doing this a year ago. I've learned so much about the different levels that are being monitored. It's helped me with Keto questions and understanding the workings of the body (electrolytes, minerals, vitamins, acidosis,etc.)

I am his constant advocate. I am the parent that has been in the hospital 24/7 with him (my husband stays home with our other children). I go to all Pediatric, Neurologic, Dietary, Dental and school appointments. I need all of the information and the knowledge necessary to help my child through this monster of a challenge called "epilepsy". Ask for the info - insist on it! It can only help!

Noodles on Keto? Yep!!

This has been our newest discovery for Noah's Ketogenic Diet. Tofu noodles. These can be purchased on line at www.wildwoodfoods.com OR at Whole Foods. 4 grams Carbohydrates - BUT WAIT - here is the best part - 3 grams of those carbs are from Fiber!! 4 grams Carb take out the 3 grams Fiber = 1 gram Carbs per 100 grams noodles. Noah is on the 4:1 ratio. On Friday, I fixed noodles (59 grams), butter, coconut oil, beef bullion powder and some heavy cream on the side to drink. He loved it!! He actually said - "I can't eat all of the noodles... I'M FULL." What?? A keto kid feeling full? We all got a good laugh!! Hope your keto kid likes them too!:)

Lotions/Toothpaste/Sunscreen

These are things you don't really think about until you have a Keto Kid. How many carbs in these everyday items? Well, better safe than sorry with the diet. Stick to the list on The Charlie Foundations website. It will help you rule out another possible reason for seizures.

Here are a few:

Lotions:

Cocoa butter - (cocoa butter should be the only ingredient)
Coconut Oil
Eucerin Dry Skin Therapy Original Moisturizing Cream – made by Eucerin
JOHNSON'S® SOOTHING NATURALS™ Soothe & Protect Balm

Toothpastes:

Country Gent Tooth Powder with Flouride
ECO-DENT Daily Care Tooth Powder
Arm & Hammer Advance White Toothpaste with Baking Soda & Peroxide
Arm & Hammer Peroxi Care Tartar Control Toothpaste Baking Soda & Peroxide

Sunscreens:

Banana Boat Kids SPF 30
Banana Boat Kids Sunblock Stick SPF 30
Banana Boat Sport Sunblock Lotion SPF 30
AVON SUN Kids Disappearing Color Sunscreen Lotion SPF 40
Coppertone Waterbabies Spectra 3 Lotion SPF 50

Back in The Saddle

Well, we're finally back in the saddle again. After regrouping and counting our blessings, I'm ready to get back to writing about Ketogenics. One seizure in 44 weeks has been great. But the one seizure sucked and it knocked us for a loop. Apparently for us, a few things might have contributed to Noah's breakthrough siezure....illness with fever, new type of butter(maybe), too much Crystal Light intake (calories). Anyway, who really knows? But these have been my focus. Go back to the butter that worked & never be tooo exhausted to go a little further to that one store that carries the butter you've always used. Don't switch anything if it is working. Don't let your keto kid suck down crazy amounts of sugar-free drinks because it still has calories and/or they won't remain "slightly dehydrated."

Ways to deal with the emotional crappiness of breakthrough seizures..... hot baths, crying, praying, counting your blessings, hugs from your hubby/kids and a cute 5 yr. old that looks at you while he is just waking up from his seizures to ask you "Why are you crying Mommy?"

Back In The Saddle!

Bad Bad Day

Noah had a seizure today.
I'm sad.
I'll post another diet thing soon.
:(

"Must Haves!"

Whether you're just starting the diet with your child or you're already well into the process, these are what I call "Must Haves!" In fact, I don't actually own them but I'm running out today to purchase them. These come strongly recommended by other Keto Parents!

Let's face it.....Heavy Whipping Cream is probably not that yummy! But, add a little sugar-free chocolate flavoring from Bickford Flavors (www.bickfordflavors.com), a little Stevia or Sweet-N-Low, whip and "WahLah!" A yummy whipped cream treat.

The key to every thing you make with the diet it making sure your child eats every gram. This frother is an easy way to whip small portions of cream and not lose grams. The tiny scrapers are great to help you scrape out every last drop!!

I've thought that using my fingers was the most accurate way to scrape out every last bit, but ya know what......yuck. I'm buying these today. I found the frother at Target for $25 but they have a less expensive one for $10. The mini spatulas can be found anywhere and range from $7-$10 for 2.

Love my Keto Kid!!

Be Prepared

I sought some advice on this subject from many parents involved in the Keto Yahoo group. I've come to the conclusion that "Being Prepared" for the stressful times that come with the diet is individual. There is not one answer for everyone.

I think as a Keto Parent we should sit down and write out the different scenarios that we consider an "emergency" situation for our Keto Kid. Next, write out the way you would handle each scenario. Just a little planning ahead might make those really freaky/stressful moments a little easier. Remember to always run your plan, medicine choices and dosages by your dietician and neurologist. Trying to get approval during an emergency is impossible.

Here is a few of my "Emergency" Situations & how I plan to handle them. Most we have already faced and my list helped me a ton. I didn't have to freak out looking for stuff or worrying about dosages. I didn't include phone numbers of physicians/dieticians on this list because it's the internet. But those are key on your list.

1. Illness
a. Ibuprofen (adult 1 tablet), Diabetic Tussin (1 tsp.)
b. Get plenty of fresh air when croupy
c. Humidifier
d. Notice subtle changes, take notes.
e. Watch for Carpal Pedal Spasms (flu)
f. Get plenty of fluids. Monitor closely.
g. Refusal to eat - Get favorites. Call Dietician if necessary.
h. Always keep acceptable medication list with Keto Binder & take to the Pharmacy.
(Your dietician should give you a list of acceptable meds with their carb numbers that you can take to your Pediatrician as well as the Pharmacist. This is key. Never Ever be timid about asking your Pharmacist about carb/sugars in meds. A good relationship with a good pharmacist is essential!)

2. Seizure
a. Time it
b. Bulb Syringe (Emergency Prep kit in car and at home in pantry)
c. Diastat -20 mg after 7 minutes
d. Hospital Protocol Letter in Car/Home Emergency Kits

3. Too Ketotic
a. Small glass of apple juice
b. Take Ketones
c. Page Dietician

Poetry

I read this poem that was circulating on the Ketogenic Yahoo Group. I loved it and hope you will too.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla
December 1981

Keto Newspaper Story

The Contra Costa Times recently published a piece on the Ketogenic Diet. Our family was part of that interview. Here's the link.

Check it out:
http://www.contracostatimes.com/ci_8108025?nclick_check=1

A video clip about Noah is also featured to try and get the word out about the diet.

Hang in there everybody!!

Keto Tracking Page

Thanks to Shelly for letting me know that it was difficult to get to the Tracking Page from the link. I'm new at this blogging thing. So....... here it is.... the actual Tracking Page. Hope it works!!
I use the Meal Plan to mark off once the meal was eaten. Please make adjustments to fit the number of meals that your child eats and anything specific to your family. I use a Microsoft spreadsheet format.

Month

Week #/Weight /

Ketone

Specific Gravity

Meal Plan

Seizure Activity

Notes

Date

Day

AM Range

PM Range

AM

PM

#1

#2

#3

#4

#5

Sunday

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

2 Helpful Hints

HINT #1:

It's true. Cinnamon can work miracles to get our keto kid to eat. A sprinkle in butter, with peanut butter, on a keto pancake... whatever works. Cinnamon adds flavor even in small amounts.

HINT #2:

Let your child drop a little food coloring into their cream, water, Hansen's carb free-sugar free soda, or whatever keto thing you can think of. It's delightful for them and can add variety in a simple way.

YOU CAN DO IT!!

You know what? The diet is hard. It's a big time commitment and a lot of information is thrown at you very quickly but YOU CAN DO IT. These are the sacrifices we make to help our kids. This is completely do-able!! Your child was meant for you. You must be amazing because God trusted you with such a special human being. He knew you would love and take good care of this child

If you haven't tried the diet..... TRY IT!! It can be overwhelming but if it means one less seizure - it's worth it! If it doesn't work.... something else will.

Keep fighting. Keep loving. Keep praying.

I love my Keto Kid!

KETO KIDS LOVE NUTS

My Keto Kid loves nuts!! This is one food that my Keto Kid eats that I wish wish wish I could eat regularly too. Macadamian nuts and Pecans go over great for Noah's Keto diet. He doesn't like mayo so most of his fat comes from either his Heavy Whipping Cream or butter. His meals that use macadamian nuts or pecans don't require butter. That's great because he can get sick of butter pretty easily. His favorite meals with nuts are Pecans, String Cheese, a little peeled apple and heavy cream to drink. Another is macadamian nuts, cheddar cheese, peeled apple and heavy cream. Hope your kids like them too!

I love my Keto Kid!

Keto Tracking

The Keto Diet requires keeping track of tons of information. My friend Kirstin gave me a copy of the form she uses for her son's information. I've adapted it a little and I use it daily for Noah's urine test, ketones, specific gravity, meals eaten and notes on any illnesses/seizure activity. Hopefully this might help you too:) I've published on Google Docs. The link to the Tracking Page is under my "Keto Keepers" Page Element to the left.

I love my Keto Kid!

My KetoKid

This is my KetoKid Noah!! Welcome to our blog about the Ketogenic Diet. I decided to start this blog in hopes that we can help other people with their KetoKids. I'll be posting diet suggestions; food we like, don't like, tricks for getting KetoKids to eat and anything else about the Keto Journey. I'm hoping blog readers w/KetoKids will input helpful ideas/hints and questions too. Support is key to making this diet work!! We couldn't have done it without our dear friends Kirstin & John & their KetoKid - Nikko! Thank you K,J, A & N!!! We love you!

Noah's story:

Currently 38 weeks seizure free on the Ketogenic Diet!!

Noah will be 5 yrs. old next month. He has a genetic form of epilepsy known as GEFS+ (Generalized Epilepsy Febrile Seizures Plus). His first seizure occured at 6 months. He has suffered weekly seizures on average and more often when ill. Most are tonic clonic with some complex partial as well. We guestimate around 200 seizures over the past 4 1/2 yrs. He has failed 4 anti-epileptic drugs and suffered through some serious side effects during those drug times. Noah's longest seizure lasted 3 hours. He has been hospitalized too many times to count, placed in the ICU many many times and usually suffocates on his saliva during seizures. We have come extremely close to losing our little guy many times. He is currently on Topamax although we aren't sure of its benefit at this point. But as most Keto parents know, we aren't removing the med currently because we are 38 weeks seizure free on 1/17/08 with the Ketogenic Diet. Why rock the boat now? Right?

Noah began the Keto Diet on 1/9/07. Under excellent supervision, we started this Keto Journey. During the first 3 months of the diet we "fine tuned" things a ton. Noah began at a 3:1 ratio w/1400 calories. After many adjustments, we settled in April at a 4:1 ratio & 1000 calories per day. April 27th was his last seizure.

We've had a few adjustments due to growth but he is currently at a 4:1 ratio w/1250 calories divided between 5 meals per day. He loves his diet! We love his diet! It means he is alive, happy, laughing and beginning Kindergarten in the fall in a regular classroom.

We're blessed to have him in our family. We are grateful to our God for bringing us to this diet. Grateful that it has helped. We hope to serve other families in their Keto Journey as a support, a listening ear and an idea board with this blog.

Thanks for reading!!
I love my Keto Kid!!