Sunday, May 31, 2009

Still with the program

We had our appointment with the keto team last week. The diet is definately helping with the seizures. The only seizures Grace has had since starting the diet were the week she came down with pneumonia back in March - giventhe fevers she had that week, this was expected. The great news is that they responded to the medicine and were short. The downside of the diet is that Grace is not putting on weight. She grew almost two inches since starting the diet but she has not gained back the weight she lost since starting the diet. This puts Grace well under the fifth percentile for weight given her height. In addition, her hair is starting to thin and the hair itself is brittle. We need to take Grace for some additional bloodwork to check on her nutrient levels. She might be given additional suppliments to take to help resolve some of the diet side-effects.

The biggest shock I had from the visit was that our approach to get her to eat - allowing her unlimited protein - is exactly what the keto team would have recommended. I felt after our prior visit that this would not be allowed. I actually thought that by morphing the diet the way we did that she would no longer be considered under the program. I am happy to say that was not the case. I do believe that in this case the theory of being easier to ask forgiveness than permission held true!

Gracie's new passion is peanut butter. She eats several spoonfuls of peanut butter - at a meal! We are going through a small jar of peanut butter in a matter of days. When nothing else works, we are able to get her to eat peanut butter and McDonald's chicken nuggets - with the breading peeled off, of course!

Tom also started giving her some of the special Nano VM suppliments again. For a while, she was gagging on it and spitting it up, so we stopped trying to force this on her. Tom is the recipe master and he managed to mix the powder in with the ground up keppra and an absolute minimum of liquid. She already hates the Keppra and calls it her 'yucky'. Now, she gets the vitamins in along with the yucky. I guess she is expecting it to be yucky and she is ready with a drink to wash it all away, she doesn't realize that an additional yucky thing has been added in.

In other news, Rita turns 6 today! Happy birthday to the best big sister! We had Rita's party last night at Bounce U. It was a lot of fun. The energy level from 20+ kids her age running and playing was great.

Thanks for checking in and keeping us in your thoughts and prayers!
Marie, Tom, Rita and Gracie

Sunday, May 17, 2009


Our seizure free day counter is now up to 72. Woo Hoo! The last few seizures Gracie had have all been febrile - caused by fever. Her last non-febrile seizure was in October 2008. In regards to seizures - Gracie is doing great!

Grace has decided that the diet is not for her. She go to the point where she just flat-out refused to eat - anything! Of course, she would be happy to have a chip or cracker or such but nothing else. The beginning of the month, Grace dropped back into the 24 pound range. We did try force-feeding her but she is getting smarter - she would make herself gag until whatever got forced down came back up - or she would just spit out a mouthful of oil or heavy cream at whoever was trying to feed her. Out of desperation, we started letting her eat all of the protein that she liked; we switched from heavy cream to all oil; we started giving her Flintstone chewable vitamins instead of the Nano VM vitamins. As of this morning she was almost back to 26 pounds - 25.8 to be exact.

In the midst of the Gracie's hunger strike she was also having trouble staying awake. She was taking 5 hour naps in the middle of the day and barely able to stay awake at night until bedtime. She had a cold but that just did not explain her state of exhaustion. We got some lab work done and lo and behold, her Depakote levels were high again. Her neurologist lowered the dose by one capsule daily and we have been doing great. It took a few days for Grace to get back to a normal sleeping habit. Everything else was fine. We were worried about anemia and liver function but those were fine.

We go back to the doctor and the keto team on Tuesday morning. We put off our three-month visit because that was the point we were to make a committment. We are not ready to commit to the full ketogenic diet at a 4:1 ration. We are willing to commit to a Modified Adkins - which is pretty much what we have been doing the last few weeks.

Our neurologist cautioned us to not anger the seiure gods and we have been trying. However, we have given up on the strictest version of the keto diet and we adjusted her medication. Hopefully, the seizure gods stay in agreement and Grace stays seizure free!


P.S. I was at a family function today and I was reminded that many people have been checking the blog and I have not updated it recently! I will try to do better!

Friday, May 01, 2009

Doing OK

Everyone here is alright. I must admit that the news stories about the swine flu caught my attention. I am worried Grace will catch it and end up with pneumonia again. She has a sniffle right now and that it all. We are watching her VERY closely for any signs of things progressing. Yes, I am paranoid!

The girls are doing well. They seem to take turns waking up in the morning. One wakes up early and then 'helps' to wake the other. One morning Rita was very helpful and jumped on the bed Gracie was sleeping in. Grace just wanted to burrow under the covers and be left alone. The very next day, Rita was the sleeper and Grace was the helper. Grace decided to play doctor to Rita. It was quite amusing to watch Grace try to listen to Rita's heart with her stethascope while Rita was trying to dodge her ministrations. We would prefer that they both slept in once in a while and let us also sleep in - so far no luck!

We have not had our three-month visit with the ketogenic diet team. We are putting it off and off. Part of my reluctance is that I am not sure Grace is up to making the long-term commitment on the diet. Feeding her each day remains a struggle. She fights the heavy cream and oil. She refuses mayonnaise and butter which would at least help to add variety to her fat choices. Grace does not like the vitamin supplements and often spits them out. It is difficult to be sure that she is getting sufficient nutrition between the supplement issues and the not eating issues. We really want this diet to work. However, we don't envision 3 years of force feeding her to be a good thing. We continue to procrastinate.

Take Care and thanks for checking in!
Marie, Tom, Rita and Gracie!