Holiday Update

Bertrand is cuddled by his 1st Lt. Uncle John during a post-lunch nap.

Our family is spending the first half of this holiday season in Park City, Utah at Bertrand's grandparents' new house. Bertrand is enjoying every moment! He is clearly a winter sports guy if those sports include: being pulled in a sled, hiking via kelty backpack, and sitting by the fireplace. Oh wait, that last one is *my* winter sport! ;)

It's been a relief having extra pairs of hands and eyes around to care for Bertrand. The introduction of a new seizure medication, Lamictal, had me particularly worried due to potentially fatal side-effects such as Stevens-Johnson syndrome and liver failure.

However, so far Bertrand is doing great! In less than a week on Lamictal, all of his seizure-types have seen significant reductions. For example, his atonic seizures were down to 2 yesterday from 30+ daily a week ago. (Today, he hasn't had any! Knock on wood.)

Even more telling than the number of clinical seizures (since so many of his are sub-clinical) is the eye-contact, the number of smiles and daily laughter! We couldn't have received a more beautiful and perfect gift than hearing our son's joy manifest itself!

Lamictal is a drug with a long half-life, so we are no where close to seeing its full effect. Bertrand is on day 6 of taking a 25mg orally disintegrating tablet (ODT). His final dose of 100mg will be reached mid-January, and full effects won't be seen until early February.

Potentially complicating this titration are several factors: upcoming travel, hospitalization, potential sickness, changes in school/therapy schedules, and a wean from zonegran. Timing the wean from zonegran--should we start in February? or start next week?--consumes my brain.

Bertrand stands to gain as much as 6 hours of consciousness back each day since that drug has made him so sleepy without contributing any additional seizure control. But, in November, reducing the amount by 25mg caused a temporary increase in seizures while his body adjusted.

The scientist in me has no doubt that we should hold off on the wean until we can hold other factors as stable as possible. The mother in me simply wants her baby to stop suffering from the drug's awful side-effects as soon and as safely as possible. Can there be compromise?

On the non-pharmaceutical front, Bertrand will be alternating occupational and physical therapy at Shriners Hospital every Tuesday, starting the 2nd week of January when we return from Cleveland Clinic. And speaking of Cleveland, these are the updates to B's team there.

• Sumit Parikh, M.D. - neurometabolic & neurogenetic specialist
• Debabrata Ghosh, M.D., D.M. - movement disorder specialist
• Deepak Lachhwani, M.D. - epileptologist