Message from Memphis

As you can tell from the above post title, we are in Memphis - at Lebonheur Children's Hospital to be exact.

For those who aren't Facebook friends, a quick background on how we got here:

For the past few weeks, we have been hearing wonderful things about Lebonheur Children's Hospital - and about a particular pediatric epileptologist - from friends and Claire's therapsists. We have been concerned that Claire's infantile spasms were not being treated with a sense of urgency in Atlanta, and every time we expressed those concerns, someone else would mention Lebonheur. On Friday, I called Lebonheur to see if I could schedule a consult with the epileptologist that I kept hearing so much about. I was told that he was booked three months out and was leaving town on Monday for a two week conference, but he would see us this weekend if we could be at the hospital by 6:00 a.m. on Saturday morning. So, within three hours of having first called the hospital, we were in the car making the seven hour drive to Memphis.

Our experience so far has been excellent! The doctor has taken a really thoughtful and aggressive approach to treating her infantile spasms.

For those who know a little bit about neurology, he has stopped (yes, stopped) her Phenobarb, Topomax, and Klonopin (not weaned - stopped) and is pushing Vigabatrim and starting ACTH.

For those of you who don't know much about neurology:

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  Stopping seizure medications (like phenobarb, topomax, and klonopin) is rarely done, since doing so can cause withdrawal, which can lead to increased seizure activity


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  Vigabatrin is a medication used to treat infantile spasms. Claire has been on it since she was diagnosed with Infantile Spasms in late-September, but this doctor has decided to almost double her dosage, which is a huge jump, at least by our Atlanta neurologist's terms. Under his care, we were increasing the dosage by about 25% every 2 weeks.


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  ACTH is a steroid given by intramuscular injection that is also used to treat Infantile Spasms. Usually, doctors use either Vigabatrin or ACTH to treat Infantile Spasms and will wait for one to fail before starting the other, but in this situation, the doctor has decided to use both at once under the theory that it is best to be aggressive and knock these things out as quickly as possible.

So far, Claire has had three ACTH injections, and she seems to be taking them like a big girl. She cried the first time, but since then has been okay when we give them to her.

In addition to receiving great medical care, we were lucky to have some wonderful visitors who drove all the way from Oklahoma to hang with us.

Between the great medical treatment and the visit from Amy and Parker, it has been well-worth the trip! No word yet on when we may be able to go home, but I will keep you posted.