Monday, April 27, 2009

Lauren has been really good these past couple of weeks. She still has grandmal seizures in her sleep, but they have become less frequent this past week (she had two nights during this past week where she had 1 seizure while sleeping). Since adding the carnitine supplement she has become more stable and so much more aware.

This has been very nice but has made it hard in other ways. Lauren has been on the ketogenic diet for over a year now. During this time she has not complained for "real" food, if she asked I would tell her it was not good for her brain and when she was bigger she could have it. She has been okay with this answer until lately. She cried over one of Ryan's chicken nuggets for 5 min the other day. It really breaks my heart when she is like this, but I know it is the best thing for her. She has also started to refuse to eat her meals. This has turned into huge power struggles between the 2 of us. So we are having to kind of go back to how it was when we first started the diet-give her 20 min to eat and then throw it away. When we first started the diet she went almost a week without eating but since then she really has been great with eating her food, until now. I have become pretty creative in her meal planning! Last night I was trying to make chocholate truffles, we will see how it goes!

Along with this came a great blessing. Lauren started swallowing pills! This has been so huge for us. Most of her meds and supplements come in adult pill form since she can't have the sugar and carbs of liquids. We normally have to crush her pills and mix it in her butter. Getting her to take her medicine has always been a huge struggle. Before the diet when she was on 3 anticonvusants we use to have some of our neighbors come and help with giving her meds-we have great neighbors! It is so nice now, she lays down and she puts the pills in her mouth and I pour a little water in her mouth and its done! Nathan my 10 year old son just learned how to swallow a pill and that was quite a struggle!

So overall a great week!

3 comments:

Tiffany said...

Hang in there Tami!! Gosh... you are amazing... and there are MANY blessings in store for you in heaven! I'm so glad that Lauren is doing better... and pray that little sweetheart Lauren will not fight on eating!

Fawn said...

Hi Tami, so glad to hear that things are a little better. We've been there with the food strikes, too. When she started refusing food after being good for so long, it was really hard to deal with! In my daughter's case, we think she was actually getting toxic on the Depakote through metabolic changes of the diet. Once we weaned her off that, she was much better. And then we added a snack because we could tell she was running out of fuel overnight and suddenly she WANTED to eat! Amazing. Sorry to blather on, but I guess I wondered if Lauren has maybe grown a bit and needs a calorie adjustment...

The chicken nugget -- oh, man. I feel for you! That's the worst feeling.

Hang in there!

Kim said...

Go Lauren!!!!!