Wednesday, August 11, 2010

The Starting of the Diet

Evan was admitted into the hospital on Monday, August 2. We arrived at about 11:30 am and were taken straight to his room where they put in an i.v. and lots of blood was drawn for tests. They checked all his vitals and weighed him and measured his height. They also administered an EKG which totally freaked him out after already being poked and prodded. He was NOT a happy camper to say the least.

The one thing I wish someone would have told me was that we could have fed him a regular breakfast. So, he had not eaten since the prior evening. I thought once they brought him the ketogenic eggnog that he would guzzle down the drink, but the exact opposite occurred. He wanted absolutely nothing to do with that eggnog. We started forcing it down by holding him down and using oral syringes and we did get about 6 oz of the eggnog in him. Over night, Evan got extremely sick and kept throwing up. I would have to say that this was the worst night of my life. Tuesday morning arrived and all Evan did was sleep, and this is not my son at all. My son is usually a very energetic boy that I have to fight to get to sleep and now he is barely responding to us.

We finally met the dietitian that will be an important part of the keto-team. We told her how he wanted nothing to do with the eggnog. She said she could add flavoring and some liquid sweetener to make it taste better, so we agreed and tried that with Evan..Nope he still wanted nothing to do with it. Again on Tuesday, we are forcing it down his throat. Since he wasn't drinking the proper amount and hadn't had anything to eat since Sunday night, he went into acidosis. His co2 levels fell down to a 5, and a "normal" person should be at least a 30 and on this diet they want you to try to maintain between 13 and 15, so a 5 was not exactly good. The interns and resident at the hospital just kept looking at the numbers and kept trying to discourage us from going further. Seriously, not even 2 full days and they want me to give up?? I said " no way, we came here to try this and we are trying this!". I kept pleading with the dietitian and doctors to just allow him to start actually eating foods allowed on the diet.

Wednesday morning, the dietitian came to his room and then took me to her office and showed me how to use the ketocalculator and how to use the gram scale and weigh his food. She decided we could start the actual diet by giving him solids. His first ketogenic lunch was grilled chicken, butter, green beans, and heavy cream and guess what?? Evan ate every last drop of it and the only time he actually drank the whipping cream. Things really started to look up from there and he was more awake each day, but then the doctors on the floor kept getting concerned with his "numbers" again. They started loading him up with sodium bicarbonate orally and through the i.v. . His levels would be steady during the day and then drop again overnight. They even went as far as to tell us he could become comatose and die and that really scare my husband and I into almost giving up on this diet. But, when the actual doctor, who we will be dealing with during the ketogenic diet, said she is not worried about his numbers as long as he isn't looking lethargic, my husband and I bucked up and said okay..we are NOT giving up.

Honestly, the most stressful part of this whole diet is that we had to switch all his meds over to sugar free. He now gets actual pills that we have to crush up and so far everything we have tried to put the meds in hasn't really worked. Nothing has masked that nasty bitter taste for him. I thought I found a solution by putting all his meds into the sodium bicarbonate and then mixing in a pinch of sugar free jello powder. He took it just fine the first day, but now it is back to me having to pin him down and forcing it in him. I hate having to do this and hopefully i can find something that will work!!

The most rewarding part of this diet.... EVan has not had a single seizure since Tuesday Aug 3!!!!

1 comment:

  1. You are doing a great job Denise. Hang in there! Love to you all...xx