Wednesday, November 13, 2013

... if just for a moment

I'm sorry it has been more than a month since the last post!  I'm desperate for sleep but wanted to give a little update on how things are going.  But first, the Halloween photo.  The boys dressed up as some of their favorite NASCAR drivers and went trick-or-treating with our neighbor, the kitty cat.

Will's ketogenic diet initiation at the hospital ended when expected, though slightly differently that we anticipated.  He was unable to tolerate anything higher than a 2:1 ratio of fat:protein.  Typically kids need to be at a higher ratio to reach a state of ketosis, but thankfully for us, Will's body was reaching ketosis at the 2:1.   He has been home for more than a month now and tolerating things very well.  His school teachers are incredibly supportive of the diet and are helping us maintain it successfully at school.  We have kept his diet the same as when we left the hospital since he is doing well, not throwing up, gaining weight, and seizure free... though we do have a couple of keto cookbooks and may branch out into some exciting snacks like butter lollipops in the near future.  Will lost his second top tooth recently, so he loves to share his beautifully hilarious gap-toothed smile.

Matt's first season of soccer was wildly unsuccessful.  He liked to kick around the ball with an adult, but the second that other kids entered the picture, he wanted a parent or grandparent to pick him up.  Not sure if he enjoyed the peloton of chaos that is three year old soccer.  He seems genuinely interested in trying new things, though, so last week he and Nate went to their first Daddy-Kiddo ice skating lesson.  It went much better than soccer.

Luke is growing up more and more each day.  He loves NASCAR, reading chapter books, and the first grade.  His latest excitement is telling us all about the Boosterthon Fun Run, which is scheduled for this coming Friday.  Can you believe that a year has already passed since Luke's triumphant kindergarten Fun Run?  If you want to remember that excitement, or don't remember the story, click here.  Remember to keep a tissue in your hand while reading!  Luke is noticeably stronger and more coordinated this year, so I am anticipating that the event itself will be less... dramatic.  Nevertheless, this is an important day for Luke and one that we are all excited to share with him!

Until next time...

Wednesday, October 9, 2013

Almost done!

Will has been doing amazingly well with his transition to the ketogenic diet this week.  What a relief that is!  Since Monday morning, his dietician and doctors have been slowly transitioning Will from a diet made up largely of carbohydrates to a diet made up almost exclusively of fats.

I know.  Believe me.  It is still a bit alarming to me too.  But the science behind it is proven.  The calories are being ingested to ensure that Will will continue to grow.  He will get nutrients to ensure his body's needs are being met.  I just have to get past the queasiness of putting straight oil into his g-tube.  Because that does not sound appealing to me in any way, shape or form.

During the first few days, we worked Will towards a 2:1 ratio of fats to carbohydrates.  He was keeping everything down and in a good mood despite the fact that he kept getting small boluses of oil into his stomach. 

On the 3rd day, Will was transitioning to a 3:1 fats to carbs ratio.  This is when his body started to protest.  Basically for every teaspoon of applesauce Will consumed, he had to also get 3 teaspoons of oil.  He would burp uncomfortably.  He started to vomit.  Oh that brought back such bad memories for all of us!

Shortly after the vomiting, Will's blood and urine work came back and showed that while on the 2:1 ratio, Will's body was creating the ketones that he needed for the diet.  And his blood sugar was stable.  After talking with the dietician, we learned that there is actually no medical need or benefit to continue pushing him to a higher and higher ratio of fats to carbs.  We could dial him back down to a 2:1.

This was really good news because the vomiting continued for several hours.  And most kids who do this diet need to be stable at a 3:1 or sometimes as high as a 4:1 ratio to get the right ketone types and blood sugar levels.

Thankfully Will woke up in a good mood today.  After he got one last vomit protest out of his system, he stayed happy, non-vomity, and in a state of ketosis all day.  We are headed home tomorrow to start this adventure there!  The landscape in our kitchen is going to change immensely as we are now required to measure all of Will's food intake down to the gram, keep a food and liquid log to ensure he is meeting all of the goals of the diet and requirements for hydration, buy and store gallons of oil, mix medically specific concoctions, and change almost all of the foods that we have worked so hard to get him to eat to this point.  We also will start checking his urine daily for ketones, and his blood sugar weekly to ensure he's staying healthy.

But these are the things that we do, and will continue to do!  The potential long term benefits of this diet are amazing, and this was the right time to give it a try.  We will know in the next couple of months if the diet is working.  If it is, we will start to wean Will off of his anti-seizure medicines to see if all of these ketones he is releasing are telling his brain to stop its seizure activity.   If we learn that the diet is working to control seizures, we are in this for the next 2 years.  Wish us luck!