Thursday, November 05, 2009

Some updates and some waiting

Emily had her EEG on Tuesday. We were supposed to go to our neurologist's office at 1:30. They called on Monday to say the tech was out sick and they had to cancel - would we like an appointment for November twenty something? Mike told them that he wanted the appointment for the EEG to be BEFORE our appointment with their nurse practitioner this Friday. So they were able to get us into the local children's hospital for the same time on Tuesday. When the test was originally scheduled I was told it would be a sleep deprived test. So I was thinking they wanted her to be up for a while beforehand so she would sleep through the test. Sure, bring a cranky tired toddler to the hospital, hook her up to some machines in a brightly lit room and expect her to take a nap. Sounds like a good plan.

Since the appointment was at 1:30,we got Emily up at her regular time: 8-8:30 and then kept her up (she normally gets a morning nap at about 10 and she really likes that nap). She was a bit whiny all morning and probably could not figure out why we wouldn't put her to bed. Mike said Emily was exhausted before and after the test, but she was WIDE awake through the whole thing. The tech puts a bunch of goop in her hair and sticks leads on them so she can do the test. I can only imagine how hard that was with all of Emily's hair! Mike said she was hooked up for about 30 minutes and the tech told him she was all set - she got what she needed. He thought it seemed odd that she was done and Emily never went to sleep. Guess we will find out if they got enough information when we go to the neurologist's office.

Speaking of that appointment, I got a call Tuesday afternoon to confirm our Friday appointment. Then on Wednesday afternoon they called back to tell us that they had to cancel that appointment and asked if we could come in on Monday. I was hoping that we would instead be meeting with a doctor, but no, we are still meeting with the nurse practitioner. I even called back today to see if they had any cancellations, but no luck. I am really loving this neurologist's office!

One more thing about the EEG. The tech told Mike that we could use dish soap to get the goop out. That afternoon, Emily looked like she stuck her finger in a light socket. Her hair was puffy and stiff. I wish I thought to take a picture, but I didn't (she will probably thank me for that when she is a teenager). I had such a fun time giving Emily a bath on Tuesday night. I think it was the longest bath ever. I did use some dish soap on the really bad spots. It did work pretty well, but still took a while to get all the goop out. After the bath, it took a long time to comb through her hair to make sure I got everything. Her hair was so dry too, so that made the combing so much fun. Emily had a good cry by the time we were done. Good times, I tell ya! She has a little bit of hair, ya know:

Emily is doing a little better on Depakote, but we are not thrilled with this medication. She is less lethargic than she was in the beginning, but she is still pretty irritable. On Sunday night, we went to our LIFE Group (on Sunday nights, our church does small group meetings in homes). She was fine through the whole meeting, but started to get a little fussy toward the end. I fed her and entertained her and she seemed OK, until we got in the car. She cried the whole way home (about a 5-10 minute ride) and then calmed for a little while when we got home, only to gear up again. She ended up having an hour long crying fit. We think this medication is really upsetting her stomach. We definitely would like to switch her to a different medication. My concern is - how do we know which one? Do we turn our child into a guinea pig trying all different drugs to see what works? Definitely something to discuss with neurology when we finally get to see them. *sigh*

Emily has also been teething lately. She is working on her canines. The top two have started to break through the skin - you can see and feel the points. Now, she is working on the bottom two. She started out getting her two bottom teeth at the same time, then the top two, then 4 molars at once and now these 4. She doesn't mess around! There are months and months in between, but when she gets teeth, she believes in working on a few at a time.

Emily met with the nutritionist today so we have the latest figures. All I can say is, there is a very good reason why we call her Weed!

Weight: 28 lbs. 10 oz.
Height: 36 1/2 inches

She gained 12 ounces this month and grew half an inch! I keep thinking the growth will taper off at some point, but I am really starting to think she will be 6 feet tall when she is 5.


Stephanie's Mommy Brain said...

Thanks for the update. If she's 6 ft by 5 yrs maybe you should call her "Tree" instead of "Weed." ;)

Katy said...

depakote is infamously bad for the gut. We want to switch Charlie to something that makes him less lethargic--my research has brought me to Keppra. It's one of the few seizure meds that doesn't have sleepiness as a side effect.

I hate that they think small children will fall asleep in an EEG. The tech is always really nasty about it too--as if I have any control over my child's sleeping!

Kyra said...


Just wanted to introduce myself and say your family is adorable! I stumbled on your blog b/c we have one as well:

My son Aidan has CP and seizures as well. Just wanted to offer that I think you may want to look into Keppra.

Aidan was on Topamax for two years for myoclonic seizures, then he started seeming more and more lethargic and like he was having "absence" seizures or periods of "spacing out" as well as a lot of Parkinsons--like tremors. After switching neurologists we eventually weaned him off the Topamax and started Keppra around April '09.

His seizures are still controlled and he is definitely much more alert and more "himself" now. No tremors, no spacing out. I can't say for sure that it was the Keppra, but it seems that way to me.

Marie said...

Just wanted to share a tip for getting the goo out of a kiddo's hair after an EEG or sleep study--Johnson's Baby Shampoo gets most of it and then try sauve conditioner for the rest. I don't know how it breaks down the goo but it does. My son has thick hair and usually we just have to do the Johnson's after the sleep studies. But we have had to go with the Suave too every now and then.