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!