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

Wordless Wednesday

A mysterious benefactor

A huge surprise awaited us when we returned home today.

After the snow storm last week, our giant elm dumped all of its leaves, leaving the street, our front lawn and our neighbors' lawns about 3 inches deep with leaves.

When we returned today, the leaves were gone, bundled into about 20 garbage bags, and ready for pick-up across the street! That must have been hours of hard labor.

We are deeply touched and grateful! Please step forward so we can THANK YOU!

Orthopaedic Braces

Today, Bertrand's physical therapist at Shriners, Cindy, suggested that we get Bertrand some leg braces. It is Cindy's hope that the braces will be able to restrict/calm the movement in Bertrand's feet thereby freeing up his concentration so he can focus on walking--rather than keeping his feet steady. (More than for physical benefit, I see this as Bertrand's attempt to stay abreast of his fashion maven friend, little Miss Hannah!)

In other news, we were late to Shriners for the first time today. The staff was shocked, but still in their staff meeting. (Basically we just didn't have to wait as long as we usually do.) Why were we late, you ask? As you can see from the picture below, we have our first real snow! The picture was taken this morning and it is coming down even harder now. It looks more like Christmas than Halloween! It is definitely time to look for a 4-wheel drive car.