Seizures, Foot Massages, Food

From James:

So Young and I visited her neurologist, Dr. Jonathan Amy, yesterday. This is the first time we have seen him in over 6 months. He is the doctor who ordered So Young’s first MRI and told us the bad news after it was performed.

Our primary reason for meeting with him was that Johns Hopkins suggested we get a local neurologist, since JH is so far away and we could use advice about things like the medications So Young is taking. After all, the people we are dealing with at Johns Hopkins right now are radiation oncologists, not brain experts. Also, the nurse at Johns Hopkins suspects that So Young is feeling so much fatigue partly because of Keppra, the anti-seizure medication she is taking. It might be time to reduce the dose or change medications. (Changing medications, however, might not help with the fatigue, since almost all anti-seizure meds cause fatigue because of how they work.)

We brought Dr. Amy up to speed on everything that has been going on with So Young over the past 6 months, since he wasn’t involved after the initial diagnosis. I told him about the focal seizures she has been having for quite some time now (visual and auditory hallucinations). Focal seizures are usually precursors to more catastrophic seizures, kind of like an aura is a precursor to a migraine.

Dr. Amy said that if they are seizures, they aren’t typical. He decided to reduce her dose of Keppra by half, from 1,000 mg per day to 500 mg per day. We’ll monitor her for a month to see if the symptoms get worse. If they do not, she will continue on the lower dose.

I asked if there are any inherent dangers in seizures themselves, since we concern ourselves so much with mitigating them. He said that they don’t threaten her health apart from something occurring that is indirectly related to the seizures, such as So Young falling down the stairs, falling over and hitting her head, etc.

So Young is doing well other than the fatigue, which still has her sleeping until close to noon most days. Her appetite is slowly returning, to the point that I don’t worry about it anymore. She has lost weight since getting off radiation treatment and steroids. She recovered well from the half marathon and has started running again. (You usually take a few days off.)

Foot Massage

Shannon Giving Audrey a Foot Massage Last Night While Lindsay Improvises “Relaxing Music”


An Example of One of the Many Delicious Meals We Continue to Receive, This One from Our Neighbor Suzanne


3 Responses

  1. I’m happy to hear the encouraging news from Dr. Amy. I’m proud of So Young for the discipline she’s exercised in a difficult situation. I’m glad that you are the kind of husband that deeply loves and cares for his wife and children.

    Thank you, Ellen, for sending Shannon the foot massage book. She is becoming an expert. I love the picture!

    You and So Young have done a good job teaching the girls to rely on God. When Lindsay was frightened at school by dooms day talk, I reminded her of Christ’s teaching. Immediately, she quoted a Bible verse that promises God’s protection, and ever lasting love. Thank you Peter for the Golden Ticket program.

    The meal looks so yummy! You have the most amazing neighbors and friends! Honestly, they think of the kindest expressions of care that I’ve ever seen.


  2. Glad to hear the good news!!!! Glad to hear she’s running again and that her appetite is getting back to normal. All those things are so very encouraging!

  3. I love the pictures of the girls and the foot massage…what a sweet sister to have. Glad, So Young is doing well…and back to running after a few days of recovery. Thinking of you all – few more weeks of school than I’ll be in touch…

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