Sunday, March 04, 2007

We are starting the Ketogenic Diet!


Cameran is finally ready to start the Keto diet. We have already met with the Nutrionist and we are ready to begin after a ton of detailed paper work of how it works and what we will use. It is going to take lots of work of a VERY strict diet to overcome these remaining seizures she is having, which is about 20-30 right now. We will start with a "Short Fasting" to get her in too Ketosis and then from there we will do a 1/3 of the ratio meal then 2nd day 2/3 and then the next we will be in full swing of things.

They put her on a 3:1 ratio some of you already know what that means. If you dont the Keto diet is a High Fat diet basically a peson on the diet gets energy from burining fat rather than carbohydrates, When fat is burned for energy it leaves a resuidue called Ketones, which can build up in the blood. The diet deliberately maintains a build up of Keotnes by forcing the body to burn fat as its primary energy source, when ketones are large enough, which you can check with a urine test, the body is in Ketosis. In the presence of large ketones, seizures are frequently controlled, To promote different levels of ketone produciton, the diet is based on a ratio of fat to protein and carbohydrates(i.e. a 4:1 ratio would mean that she is receiving 4 units of fat for every one unit of protein + carbohydrate. It will take her body some getting use to this change roughly they say about 2 weeks so they say she will probably be pretty tired while her body tries to figure out what is going on and once it does things will be in normal running order. They really do not know how this diet works they just know that it does.



Cameran will have to be on the diet for 3 months before we will for sure know if it is going to work and if it does we are looking at 2 years or more on it. Her Neurologist said he will not wean any of her meds that she is currently on until maybe 6 months into it because of the fact she had such bad withdrawls from them.
We tried to wean her Klonopin a few weeks back and it was huge wake up call her seizures jumped to 70 and kept climbing higher everyday until we added it back then things settled back out to norm. Well now the seizures are continuing to climb once again to the 20's and 30's so we are glad to be starting this diet. We hope and pray that this is the one for her!




As said before the diet is very strict and one small slip up and it will result in a seziure. So that means no sugars, carbohydrates, so like no chips, pizzas, breaded anything, seasonings, pastas, cookies, cereal, juice and milk. YOu might ask what she will drink well she will be drinking heavy cream and water. She can also have caffine free and sugar free drinks, which surprisingly I did find. The Nutrionist has drawn out her meals already all we have to do is weigh that food and feed her every last drop of it! If she doesnt finish it thats all she gets that meal has to be tossed and she gets nothing until her next meal. NO SNACKS!!!!





Heres a few of her meals totaled out. We can do different things we just have to find out what we want let the nutionist know and she can figure it up for us!

Breakfast: (Has to weigh)
Bacon: 6 grams
Fat- Butter/Margarine/Oil/Mayo 32 grams
Cream36%- 11 grams (yes we even have to weigh her fluids)
Applejuice - 38ml
Egg, Fresh - 25grams
Lets not forget those meds she is on 3 grams approx. added in. We had to switch those too from liquids to tablets. Lots of sugars in those liquid meds, so if she gets sick that will take some finding from the Pharmacy to get her a med with no sugars!

Lunch:
Salami-Hormel Brand(need to stick with brand names) 24 grams
Carrots cooked- 11 grams (also veggies and fruits have to be in water only not in syrups)
Banana- 13 grams
Mayonnaise -18 grams
Cream 36%- 27 grams
3 grams from meds

Supper:
Chicken Breast, no skin, cooked with no seasonings- 13grams
Pear- 17 grams
Green Beans- 18 grams
Cream- 38 grams
Corn oil- 19 grams(has to drink some in with cream) YUCK
3 grams from meds

I have my tupperware containers ready so we when we go out I can just grab her meal and go. There will be no eating meals at restraunts for her no more we will still be able to go out we just have to take her meal with us.




We can only use salt for seasoning no pepper since it comes from a plant- counts for carbs. We however can use PURE flavorings like Lemon, Vanilla, Chocolate(if anyone knows where to get that one let me know) Almond and such but it has to be PURE. WE now label shop.....FUN FUN!

Cameran will have a follow up appointment on April 13th to see how things are going!
We will be keeping a jouranl for her, Occurence of seziures, Fluid intake, wet diapers, weight, food intake and if a seziure happens when and what may have caused it, have to keep a very close eye on that one, also we have to check her Keytones everyday between 4-7 pm they want her to have very high ketones between 8--160 I think it is. But this too has to be monitored very closely. We have to keep track of her bowels they need one atleast every 3 days and for Cameran that is a stetch sinse she only goes maybe once a week even on Glycolax twice a day. We are also to take her to have her sugars checked often maybe once a week, not all Dr.s do this but ours does which is no biggy since her Ped wants to help out anyway possible!




Oh and here is something I would have never even thought of. We can not use Sunscreen, Shampoos, Lotions, Lipsticks and Toothpaste with fragrance in them, they often have added carb that can be absorbed through the skin that trigger seizure activity. So we already made some switches to Johnson and Johnson shampoos(as directed), no lotions and Toms Natural Toothpaste. Sunscreen I will reach that one when we get there. So there is a little of the basics, seems like alot huh! It does to me too but we can do it!



Any meal ideas out there from the other Keto kids would be helpful! Thank you!

4 comments:

Kelly said...

Meals? HA! I can't remember! I think I blocked it out of my memory! But I can check my records for you....just email me to remind me sometime.

As far as the flavorings go, you can get TONS of different flavors SUGAR FREE at bickfordflavors.com

I almost wouldn't trust the stuff in the stores.....when you can get the bickford kind guaranteed sugar free!

Look into "pink stuff"....that's a snack she could have any time....along with sugar free popsicles made with the saccharin (you can make them yourself). That way, she can have things when others are having stuff--and not feel left out.

JSmith5780 said...

The keto is SUCH a huge commitment. I tru;y hope it works for Cameran. Please keep us posted!

lvoe the new layout. Was it one of the dedsign options or did you make changes on your own?

Tara said...

Karen,

What is Cameran's total calories a day and per meal? I still have all of Aidan's meal cards from when he was on the diet. He stopped it in September because of going on Predisone and then ACTH. We're hoping to go back on it after we're done all the testing for mito. Aidan was also on a 3:1 ratio with NO snacks. He handled the diet well since he wasn't a big eater or drinker to begin with. Aidan drank a lot of flavored water - mainly Water Sensations. There small liquid packs that you squeeze into sports bottles of water. Our dietician said they were ok since they were carb, calorie and sugar free. We bought them at Target and they come in many flavors (peach, strawberry kiwi, grape to name a few). One of Aidan's favorite meals was the Keto Cheesecake and I made it whenever we had a party that way Aidan had a cake also. We would serve it with fresh fruti on top.

Also, we bought some cute little ceramic (oven safe) dishes at Target in there $1 section that were shaped like hearts, bunnies, shamrocks and a christmas tree to use for holidays. We would serve Aidan's his meals in those dishes.

We bought Aidan Tempra (sugar free equivelent to Tylenol) from Americana Meds online since I wanted to make sure we had something other than having to crush adult tylenol for Aidan when he would get a slight fever from teething. I bought 4 large dropper bottles back in January 2006 and we still have one left now since I still only give Aidan meds that contain NO sugar.

We bought all the pure flavorings that McCormick's makes, but hardly ever used them. We used alot of DaVinci sugar free syrups and we were able to get them from Walmart or Marshall's quite easily. Aidan LOVED the caramel and raspberry the most.

Good Luck and hopefully this will do the trick and finally get rid of Cameran's remaining seizures. It worked immediately for Aidan and we had 7 glorious months with NO seizures. Aidan's returned when he got a terrible virus and everything went downhill.

Tara said...

Oops - I forgot to leave my email if you needed the recipes or had any questions. It's tara10573 @ msn. com (no spaces).