Wednesday, February 17, 2010

Update time!

We had a neurology and an eye doctor appt today. It was a VERY long day. We left the house at 9am and did not return until after 7pm. I am so proud of Emily though we had no major melt downs and she rides in the car so much better!
Our first appt was with neurology and let me just say I feel so much more confident with our neurologist. I feel this time that he really does care about us.
So Emily is still a mystery. He sent her latest eeg to the Cleavland clinic for them to look at. Emily presents with seizure-like activity but her eeg shows no active seziures. Her eeg is more organized and her hyps (bad pattern for an eeg) have cleared up but it seems she is still having spasms and very small seizures through the day.
Her newest seizure is very short, very small twitching of her hands, feet, and mouth. She actually did it in front of the dr. today. Here is an example of this type-this video is a couple weeks old, she now only will do this shaking for 10-15 seconds. Most of the time I probably miss it.

video

So today we increased her Keppra and Dilantin and he sent us to the eye doctor to get the ok to start the sabril (vigabitrin).

The eye dr was great and we did get the ok to start the medicine. We have to follow with him very closely because one of the side effects of this med is peripheral vision loss. Emily HATED the eye drops! That was her only melt down of the day. She was tired and hungry and she just did not want to be held anymore.

She loves to just lay on the couch on her bobby and stretch out so for her to be held or in her car seat all day was asking a lot of her but she did so good!

Our hopes with vigabitrin is that we will be able to start to wean her off of some of her seizure meds and that we will gain seizure control and she will begin to improve developmentally.

Her occupational therapist did notice better muscle tone and she is not a tight either.

Poor thing though she is losing her hair on the back and side of her head. She does not hold her head off the floor, pillow, boppy yet and she has begun to turn her head better. We turn her on her sides as much as she will tolerate it and she hates tummy time.

So I guess for now I just need to find some wide headbands to cover her little bald head. :)

We also are waiting on genetics testing. She doesn't really fit any obvious disorder so we wait and see what the next tests shows.

He does believe it is genetic but for some children its just such a rare cause they may never find it. I did get a letter about one of our tests and if insurance does not cover it they said it costs $5,000. So lets pray it covers it, i find out tomorrow.

From here if this medicine does not help will will start the Ketogenic diet. I can't explain it well it like Adkins on steroids. All fat with a little protein, no sugar at all. They don't know why it helps but for some kids it stops the seizures. We will do more research on that later.

We will be going to the Cleavland clinic soon for a 2nd opinion. After she gets started on the vigabitrin he wants us to go up there and see what they have to say. The neuro says its one of the best in the world. I have not done much reasearch on them yet though.

Pretty good day and the great news is we have nothing to do tomorrow, no therapy, no appts, just rest!! I get to sleep!! AHHH.....

6 comments:

  1. I love your blog just for this reason - so easy to keep everyone updated!!!!

    With her loosing her hair on the back, we need to get her a baby wig!!! Wouldnt that be FUN! :)

    YIPEE for more strength though & being less tight! We need to get her a little aerobic outfit for when the OT comes! She already has the legwarmers! :)

    Love you all!!!

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  2. Oh Rebecca I am totally putting her in her leg warmers next time!! lol

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  3. I'm so glad to see such positive updates!!

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  4. Yippee... glad to hear you are more comfortable with the doc and that while she is a mystery... she is doing better!!! Hugs and kisses to you all.... and maybe she just needs a cotton beret or something for her little head...

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  5. Lynn, she did wear her purple hat you made her yesterday and we had so many complements and then they would say ohh that blanket is beautiful and I said oh a friend made it (chandra) and we had Rebecca's blanket over the stroller so we had all kinds of hand made things on her yesterday. If only her knit socks still fit ;) lol

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  6. Hi Erica. My name is Judy Bowman. Your mother is a friend to my daughter (Cathy Whitener). I have been praying for your family & I have other e-mail friends & family doing the same. I can't even imagine what you are feeling, but you have a wide scope of people who care & want the very best for Emily. She is beautiful!! I just wanted to join the others who leave comments & to tell you I have done a lot of research on the web, and other sources, to get any information I can find. I'm sure you have a wealth of information, from your doctors, but I wish I could find something to help you. I was a nurse, but I am now on disability & can't work. I dearly loved my job. I worked at University in Postpartum, Labor & Delivery, NICU & was a breast-feeding instructor. I loved working in NICU, but it also broke my heart. It sounds like you are just where you belong, in Jesus’ care.

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