Saturday, January 30, 2010

Almost a New Month

Things seem to be getting worse for Gracie this month in terms of seizures. Pretty much since she started the ketogenic diet, all of her seizures have been explained. Basically, they had an explanable cause such as an active illness or the onset of an illness. All until this month.

She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.

Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.

They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!

She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.

We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.

Wednesday, January 13, 2010

One Year Anniversary

Today marks one year since Gracie began this journey known as the ketogenic diet. Wow.
When we first started this diet, I wasn't sure we could last one week, and one month seemed like a long shot. Here we are one year in and it was no where near as bad as I feared it would be at the start. We are at a manageable point with the diet. The benefits are still there.

First and foremost, Gracie has had far fewer seizures in this past year than in prior years. She went six months seizure free and that had not happened at any point prior. The seizures she has had have been much shorter in duration than in prior years. She has much better balance, speech articulation, social interaction and language skills than she did a year ago.

The pictures keep loading out of order. I'm just going with this order - sorry! The first picture is last June when Grace was refusing to eat. The second picture is Grace on her third birthday (January 2009). The third one is from her fourth birthday (January 2010). There is not much difference from one birthday to the next - she regainged the weight she lost last summer.

Sunday, January 10, 2010

Too Much Information?

Is there such a thing as too much information? Maybe! Grace went for her ketogenic diet blood work last week. The lab sent a 'courtesy' copy of the results to the house. Of couse I opened it and reviewed them. There were a lot of out og range results. So I looked all of the tests up on the internet.

Of course, what I saw on the internet freaked me out. By the time I actually sent an e-mail off ot the neurologist and the keto team, I was in a full-blown panic. I was starting to make a list of all of the things I would need to pack for a stay in the hospital - as I was certain that all of this meant she was very ill.

Gracie's neurologist and the whole team are wondeerful (I'm sure I mentioned that before!). I have two responses back within 30 minutes - one from the doctor and one from the nurse practitioner. The nurse practitioner replied that everything was fine - nothing to worry about. If the vitimin D levels stay low, we may need to add a supplement. The neurologist replied with a much longer e-mail - explaining what the test could indicate (addressing the fears of what I read on the internet) and how those were ruled out for Grace. Many of the results were where they want her to be given the diet she is on. And he ended with 'nothing to worry about'!

I realized somehwere mid-panic that this was the first time the lab sent us a courtesy copy of her results. Interestingly enough, Tom had lab work done the same day at the same lab and there were no courtesy results for him. The fleeting thought crossed my mind that these results may be exactly what she is getting each time she is tested - I am only seeing them unfilted this time. Of course, that thought just flitted through my head and I went back into full panic - until everyone replied - nothing to worry about.

Tuesday, January 05, 2010

Happy Birthday Gracie

Today is Gracie's 4th birthday. She is very excited about it. We had a birthday dessert and candles and presents with some family on Sunday. The pictures are from that.

The birthday dessert was something Tom whipped up that morning using heavy cream, cream cheese, Splenda and vanilla extract flavor. It tasted a bit like cake batter. The key was that everyone had a spoonful of the same thing! It also helped that it had enough consistency to support the candles!

I didn't get to posting all though the past month. Everyone has been relatively healthy, we have just been busy! Thanks for checking in on us.