Wednesday, October 13, 2010

Seizure Video

I'm posting this video for our Dr. to see Kendall's latest seizure. It lasted about 20 minutes total. I started the video after seeing 4 spasms. They got worse before they got better (much like my bad language in the video.)

We spent close to 2 hours in the Endocrine Clinic today going over Kendall's latest lab results and forming a plan next month to switch her to a "normal" diabetic diet from the Ketogenic Diet that gives units of insulin relative to the amount of carbs she intakes. This will be a very big switch for us. We have been in the groove of the Ketogenic Diet for 15 months.

Her Hemoglobin A1C results did not get run (we have to go up there tomorrow and have them run again...) but I suspect it will be higher than it should. Kendall tends to need a very small dose of Humalog when her sugar is over 200. If we go any higher than one quarter of a unit, she will drop below 40. So, we haven't been correcting her unless she is over 300. I found out today the normal range for a 2 year old is between 100-150.

The rest of her results are as follows:

Total Cholesterol 188

HDL 41

Triglycerides 241 (super high!)

LDL 99

Cholesterol/HDL Ratio: 4.6 N (no earthly idea what that means)

I really would have liked to see her get off the diet. I wanted it to happen before April (when she starts PPCD.) The Nurses, Diabetic Educators, and NP's in the Endocrine Clinic really have to stop, shift gears, and think things over every time we call. Today was no exception. Kendall is famous up there, and we had 4 visitors on the same topic and left without answers. Our Dr. is out on Medical Leave but is expected to return hopefully next week! He's the only one who gets it and can ease my mind! Ketones make your body more resilient to insulin (which really confused me today) so starting the pump will require a lot of supervision. Developing a baseline without the Ketogenic Diet is imperative to starting the pump.

So today we found ourselves between a rock and a hard place. We hate seizures. But uncontrolled Type 1 Diabetes can be disastrous too. (Thank you Dr. Oz for that Oprah show that has scarred me for life)

How ironic is it that after an afternoon of stress about being on the diet and coming off the diet...we come home and she has a darn seizure?! Ugh.

On a positive note, she had a great night sleep last night. Maybe the Melatonin will work for her after all?!


Reagan Leigh said...

OK...I don't know anything at all about diabetes so those numbers don't mean a lot to me. This may be a totally stupid question...but why is your neurologist so insistent on taking her off the ketogenic diet??? Is it because it's causing problems with her diabetes?? I so HATE to see her having seizures again. Praying that they come up with a good plan that will work to help everything!!

Reagan Leigh said...

So, the first time I watched the video, it was with the volume off. I just watched it again and my heart is breaking for you. I've been there, done that. Listening to you, brought back memories of me watching Reagan and agonizing with each seizure. Ugh. Makes me sick. I HATE seizures!!!! Poor baby and poor mommy!

MrsFought said...

Uggghhhh!!! So sorry for Kendall! That just stinks!!! My heart is just breaking for you guys! I hope everything works out and you can get some control again.

Anonymous said...

Admiring both of you in how you manage Kendall's medical needs.


UniqueMom said...

I have a song I sing to Sylvie when the seizures come on... you can sing it to any tune you like but it sure does make us feel just a bit better... "Nobody likes them, everybody hates them, seizures, seizures, icky icky seizures, they should go eat worms!"