Sunday, March 28, 2010

“… know this child will be gifted, with love, with patience and with faith…. She’ll make her way!”

You may have heard through the grapevine, or you may be totally shocked to find out right now, that we ended up going to Cornell Hospital in Manhattan on Friday evening. We just got back a little while ago, so it was a short stay, thank goodness. The accommodations at this hospital are… ummm…. unfavorable/uncomfortable/uninviting. We’re totally spoiled after our stays at Westchester and how child/family friendly the Children’s Hospital is. Boy, were we in for a rude awakening (complete with bulletproof glass surrounding the nurses station).

Let me not rant. The neurologist we’re supposed to be following up with, as it turns out, isn’t exactly comfortable treating Sarai while she’s on ACTH and still having spasms. (Thanks for telling us that before we left the hospital and before I drove 45 minutes to have a follow-up appointment with this guy.) He didn’t think we should have been discharged from the hospital while she was still having spasms and felt that Dr. James basically should have had us following up with him. (Of course he gave us the option to do that, but he doesn’t accept ANY insurance, and it’s a paperwork nightmare. Have I said that before?) So the new guy said we should go to Cornell because they’re better equipped, have more experts and a whole team available to diagnose rather than an individual.

We got there Friday night and they hooked her back up to the EEG. They said the good news is there’s no hypsarrhythmia (the “background” looks mostly normal, which Dr. James already told us). The bad news is that she is sometimes having up to 90 mini seizures within an hour and a half. It looks like nothing more than a head nod, but it’s a seizure/spasm. So they put her on an antiseizure medication, Topamax. Dr. James also said this would be coming if the spasms didn’t totally stop.

We’re supposed to follow up with them in two weeks for an overnight stay and another EEG to see how the Topamax and ACTH are working. The ACTH will soon have to be weaned off and if the Topamax doesn’t do the job alone, more medications will be added. We’re not totally sure we’ll follow up with them. The overnight experience was really awful. (I did tell the doctors how I felt before we left.) We’re going to call a pediatric neurologist at Westchester and see if he can give us an idea of what he thinks. I think, though, that we really need an epileptologist. So I’ll be asking about that.

I have to tell you that Sarai is as happy as a clam, cooing and smiling away. (It’s even getting a little annoying…..Noooooo, I’m just jokin’ ya!) The ACTH makes her cranky and very hungry, the Topamax is supposed to make her sleepy and lose her appetite, so I’m thinking they kind of cancelled each other out. But, what do I know?

If you didn’t already know, the song in today’s title is Wonder, by Natalie Merchant. We heard it in the car on the way home from the hospital today. Sure sounds like she’s singing about our little girl!

1 comment:

  1. A high school friend of mine (Claudia) just pointed me to your blog. I have not read more than this first post yet, but I wanted to send you a message. I have twin girls that just turned 1 in March. They were 6 weeks early. They were both also just diagnosed with epilepsy. I saw you mention that sometimes the seizures for your daughter are nothing more than a head nod. That is exactly what my girls do, called drop attacks. We just started the medication Keppra because they were having a lot of brain spikes on their 30 minute and 48 hour EEG tests.

    You said that you really need an epileptologist. I am not sure where you are located, but I wanted to recommend ours. We are working with the Childrens Hospital in Boston, Dr. Loddenkemper. He is, thus far, wonderful. All of that staff is very friendly and supportive.

    I have been thinking of starting a blog to write about our journey through this. The whole epilepsy journey scares me. I think it is more the unknown than anything else.

    If you want to chat any time, I am willing! I would love to talk to anyone with similar experiences.

    Sabrina
    slholcomb77 (at) gmail (dot) com

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