Sunday, April 3, 2011

Ketogenic Diet Week 1/ Meet Jet

This last week has just been crazy. We went in last Sunday to start the diet. We got there around 6 PM, and they got us up to our room. We set around for a while because it was time for shift change and there weren't any set nurses for us yet. Once they did get things rolling they needed to get an IV started in him just in case. So they tried.... Ethan was great, and is almost getting used to being poked which is just so sad. They poked him the first time and wiggled the catheter around trying to get in his veins, but the nurse said it felt like scar tissue was blocking the vein so they needed to try another. So another nurse tried on the other side, same thing.... Yet another nurse (a special one they called down) tried a third time and was finally successful in getting his IV started. Apparently he's been poked so many times recently that his veins are just all blocked up. He toughed that one out better than I could have!

Of course he had McDonald's as his last meal!!!

 Doctors came in and out to chat with us through the evening to give us an idea of what was going to happen. For the first 2 days he wouldn't be able to eat anything, only drink water and 12oz of some very gross smelling formula stuff named KetoCal. Through those next two days he couldn't stomach the stuff, and would just throw up every time he was given it. He also wouldn't drink and started to become dehydrated. What's worse his rash started to spread out of control, and by the second day the neurologist said it was getting so bad it could actually kill him (it was turning into something called Steven Johnson's) so they did decide to pull the new medication.

Finally on day 3 we were able to start feeding him! His first meal consisted of eggs, bacon, strawberries, butter, and cream. He ate it, and it seemed to go over pretty well. We fed him the rest of the meals for the day and he just wasn't able to keep anything down. He would finish a meal and 5 minutes later it would just come back up. Poor guy, he was miserable. By the end of the day his blood sugar was very low, and they had to give him a little bit of juice to bring it back up. He was totally out of it, and unresponsive. I could literally not get him to smile. They started him on a medication to help with his stomach, and we settled in for the night.
His very first day of keto meals
By day 4 things were starting to turn around. He was feeling better, and meals were staying down. They had told us we would most likely be leaving on Thursday, so I was so excited when the pediatrician came in and told us how great we has been doing, but then she ended with, "BUT the neurologist wants you to stay one more day." I was so upset, but I suppose it was better for him to be there if something went wrong then to be 60 miles away at home.
Finally perking up and his rash getting a little better
Our last day there was pretty uneventful. He continued to keep his food down, and was in much higher spirits. We were able to finally leave in the afternoon, and we were both ready to get out of there! Now what I haven't said yet is up to this point the diet has worked. Ethan stopped having seizures (or signs of sub clinical seizures) by the second day. As we drove home and I gazed in my mirror I didn't see the unconscious seizing boy I saw a week earlier, I saw a happily sleeping little boy who had no seizures before falling asleep, during falling asleep, or while sleeping. His brain and body were both getting the sleep they needed.

Since we've been home the diet has been pretty easy to follow. He is happily accepting the foods, but he is pretty hungry all the time and we can't eat in front of him at all. He's constantly asking for sandwiches which are big no no's now. His body will adjust to the smaller portion sizes over time. In the last two days it is almost as though his brain has switched on. He's speaking clearer, and counting some again. Our little boy is coming out of the fog. He isn't shaking nearly as much, and he is no longer napping at all during the day! So far this diet has been all we could have asked for, and more! If only our old neuro would have considered it 4 months ago when I initially asked about it.... So happy we found Children's!
Someone was happy to see brother!

 In separate news, we have a new family member. Much earlier than I had planned, Ethan's new puppy Jet has come to live with us! I wanted to wait about another month, but when you find the right dog you have to move, and Jet is perfect. He is a poodle, but don't imagine a show dog in a show clip. Poodles are the second most intelligent breed behind the border collie, but they aren't nearly as energetic and crazy. They also don't shed. Poodles can be exceptionally cute when not clipped in a typical poodle fashion. He has so far been an amazing puppy. He is extremely calm and well behaved. The only 2 accidents he has had have been completely my fault. In just over 24 hours at home he has already mastered "sit". He is so smart and I can't wait to get into full training with him. So far he has had his ears pulled, legs pulled, and been slept on and he could care less. Such a good boy! (We are of course working on being gentle with him) Thank you again to everyone who made it possible for us to get him. He's going places!
Nothing phases him
New buddies


  1. Wahoo!! Sounds like the diet is helping you get back to your "new' normal!!! I have been waiting anxiously to hear if it had helped him!!

    Wanted you to know that I did receive paperwork for Ethan at school. I filled it out and sent if back quickly. I hope you hear back soon if your able to get benefits for him.

    Also we are currently working on some fundraisers at the school for Ethan. We are waiting on approval from the board. We want to do this for your family, it is our gift to you:) You are so sweet to offer your help, but you have enough to do right now!! I will keep you updated on anything that is decided.

    Again, I am so glad that it appears that you have found an answer to your prayers!! Give Ethan a hug and kiss for me!!!

    Shelly Bartlett

  2. Yay!!!I am soooo happy this seems to be working!I could jump up and down for you!!!I'm ecstatic!!!This is so gtreat!Let me know if you need anything!I'm also very glad you got that puppy!