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
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.
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!
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 only way we've stabilized him back to 160 is with everything divided up.
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.
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?"
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.
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!
