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!:)