Wednesday, 7 March 2012

Ketogenic Diet

Since we have not had great control of Addison's seizures over the past month the neurologists suggested that we try a ketogenic diet. We had no idea what this was and felt very overwhelmed and didn't know what to say. They asked us to start this last week when she was screaming all the time and at that point we said no we needed time to educate ourselves and wait to see if the seizures were going to progress etc.

Here is what we found...
- It is a high fat diet that is used to treat seizures. The diet eliminates carbohydrates and the body uses fat for energy. She will be in a state of keytoses which si when your body has to use fat as energy.
- 1/3 of children will have seizure control with no meds, 1/3 of children will have seizure control with diet and meds, and 1/3 of children don't see success or find it difficult
- Since Addison is tube fed this diet will be easier for us because we don't have to fight with her to eat the required fatty foods(oils, butters, whipping cream).
- The diet requires a week of hospitalization to be closely monitored as the diet is increased to the full amount over 3 or 4 days.
-The results can be immediate or take up to several months.
-The diet is inadequate in many vitamins and minerals and supplements are prescribed.
- There are side effects of the diet but nothing as bad as uncontrolled seizures(constipation, kidney stones, decreased growth rate)
- The formula consists of canola oil, small amount of prune juice, carb free formula, half salf(so she gets some potassium)
-It is precise measurements to the gram and requires a fancy digital scale we had to order from Toronto
-Her formula will have a 1:3 ratio of protein/carb to fat
- We will have to test the keytones in her urine twice a you putting cotton balls in her diaper and squeezing the pee out of them.
- She will always have the lowest carb form of medication and when possible crushed pills. No more children's Tylenol etc.
-Special soap, lotion, bum cream, sun screen, bug spray, baby wipes, or anything that could absorb into her skin! It all must be carb free! Thankfully, the dietitian gave me a list of all the carb free products such as pampers sensitive unscented baby wipes!!!
- If she starts to have to many keytones in her body which we will know because she will be flush, lethargic and panting we will have to give teaspoon of orange juice to bring her keytones down.
-Initially children may loose up to 10 percent of their body weight and we will have to weigh her every week at the same time in the same clothes.
-This will get complicated when she gets sick. Her keytones may decrease and if vomiting we have to be more careful with pedialyte etc.
-Once she is in keytoses we can leave the hospital!!!!!!!!!!!!!!!

So after realizing that Addison was still having seizures over the weekend and that the next step was increasing meds or starting the diet we decided DIET!

What did this mean at 8am Monday morning when I had to teach all day, had duty in the morning, recess and lunch, had a meeting at the end of the day, had to interview on the phone with the dietitian, prep for a sub for 4 days, cook supper and pack to go the hospital.....WOW the end of it I wanted to sit down with a nice cold glass of # 2 disagreed so we opted for a hot bath and bed!

We had to be at the hospital at 8am Tuesday Morning. Clearly Addison loves it at the IWK and was so excited that she got up at 4am...just what we wanted. Not only was she awake she was screaming. Once again the only way I could get her to stop was the turn up the music and sing to her! Nothing like 5am in the morning singing The Judds "Grandpa"  at the top of your lungs! Poor Tyler!

Off we went to the IWK to start the diet. We spent the morning in our room which is quite large and has a nice view...we upgraded to a 5 star resort this stay!
Getting ready to have her port accessed for blood work

Sterile environment getting it put in

Addison had to have blood work done, and had to fast until 12 pm.

Her first feed went well and it has gone great since! She gets her blood sugars tested every 6 hours to make sure she doesn't go to low.

We had a great visit last night with Nanny and Poppy Halloran. Today we had Auntie Debbie this morning after her night shift, Nanny Donna for the morning and then Grandpa and GG for the afternoon! Thank goodness because it would have been a long day. Even though sometimes it seems like we have a revolving door because the number of people that come in throughout a day(nurses, doctors of all sorts, etc) is crazy!
We had to say bye bye to our favorite dietitian which was very sad because she was amazing. We now have a new dietitian who specializes in the keto diet.

Mid afternoon nap on our bed

Hanging out

Playing with GG

Time to have her sugars checked

A new and improved way to look at her lights!

I participated in a study today on CP today also which was nice to answer questions about the center in an honest way.

And as always our nurse was new and not quite on the ball so we spent lots of time waiting, waiting and waiting more for stuff we needed! Thankfully we have a good one tonight!

We had a minor accident today with her mini lights...good thing they know I am a good mom or we would have had Social Workers banging down the door!

Addison had a great day of smiling, laughing, and cuddling! I even got in some oral, vision, and physical therapy! We just took her to the tub room for a bath and now she is having a cuddle with her dad.

The goal is to be home Friday!!! So we say Saturday so we don't get our hopes up!

I am on March Break next week which I am so looking forward too! I hope that by the time we go back to school we will have this whole thing settled and seeing progress! I love being a teacher but I hate being a teacher when I can't be there. It is hard on the kids. At first having a substitute is fun but by the end they are missing the structure and daily routine they are used too. I told them I wouldn't be in for the rest of the week and in a child way told them why and they seemed to understand as much as they can!

Addison weighed 20 pounds 10 ounces yesterday at lunch and tonight she weighed 20 pounds 7 ounces...
She is 30.1 inches long!

What a wonderful feeling it is to be in a hospital and not have a horribly sick child and actually relax! I mean the beds comparable to sleeping in a tent without an air mattress but I am not complaining! Shes happy and healthy!! Subway and Tim Hortons I may never want to see for a long time after the past month but at least I have a new strange addiction! Veggie subs with bacon and cheese lots of pickles and barbecue sauce and a skim milk to drink!!! A sub that I loved back in my high school days! Oh and the cafeteria jello and chocolate pudding!!!!!

Oh and....our house is final, house plans are finalized and we should be singing the papers for our new house in the next day or two!!!!!!!!!!!!!!!!!

Random Pictures from last week at home! Enjoy

Hanging out while mom is cooking!

Look at those chubby hands

Me and the babies!

Bath with cousin Jared at Grandpa and Nana's

Tank wanted to be included!!

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