Only 3 More Weeks!

Only three more weeks until Sabrina & Steven's wedding, when Bertrand will make his official ring bearer debut!


Bertrand got fitted for his tuxedo today. If B is any indication, all men in the bridal party will look great!

Medication Changes

Bertrand had an appointment with his neurologist today. We updated her on everything including the changes in Bertrand, both positive (mood, interactivity) and negative ("weird looping seizures"). The neurologist is pleased with his progress and believes that Bertrand's new seizure type is actually a kind of partial seizure, since he retains some consciousness and it affects him asymmetrically.

Bertrand's blood draw from last week had his depakote *just* in effective range and his lamictal high in the effective range. We will be increasing his depakote to 250mg twice a day and lowering his lamictal (since depakote raises lamictal levels) to 25mg twice a day. Another blood draw will be taken next week and then in a month. If Bertrand's seizures have improved by then, we can begin a SLOW wean from keppra (800mg will take 8 months).

It is worth noting that Bertrand's liver enzymes have remained steady or have even fallen while on depakote and lamictal, both of which are metabolized in the liver. Depakote is known to be particularly harsh on the organ. Not resting on our laurels, we are upping Bertrand's carnitine supplement (Carnitor SF) to 4.5mL twice a day, which should continue to protect the liver. And, since depakote binds with vitamin D, Bertrand will be getting plenty of sunshine this summer along with his 1000IU vitamin D supplement. :)

If Bertrand's seizures do not improve on this current drug cocktail, we've already begun discussion on the addition of another drug: topamax. Topamax is known to work well on multifocal seizures, which are the kind Bertrand has. We know that there is an very small chance that a 4th antiepileptic drug will help, but of course we have to try. Bertrand has little to lose from another failure but so much to gain if we succeed! We will never give up.

PS - I am very proud to say that Bertrand was congratulated on his weight AND his weight-bearing!

Ensign Elementary Walkathon 2011

Bertrand, Victoria, Nana (Diane) and I participated in the 5K Walkathon for Bertrand's school today! The day was beautiful and we all enjoyed the walk. The walkathon raised funds for teachers to buy classroom supplies, and promoted healthy, fun activities for kids. We already can't wait for Walkathon 2012!

PS - See if you can find Bertrand's name on the walkathon t-shirt--or, as he called it, the rollathon. ;)

Head Above Water

The past three and a half weeks since Victoria was born have flown by! Learning to balance the needs of two children has felt akin to barely keeping my head above water. As we get a better handle on parenting two kids, I hope to get back to posting on the blog more. Until then, here are some pictures of Bertrand and Victoria snuggling together! It's amazing how much they already love each other. :)

**********

DANCE, DANCE, DANCE!

Bertrand is currently at the dress rehearsal for his dance recital on Saturday, May 14! If anyone is attending his dance performance on Saturday morning, please let me know! We'll be hosting a simple celebratory brunch at our house and hope you can join us. :)

Happy Mother's Day!

Bertrand made this lovely mother's day gift at school!

Happy mother's day to all the wonderful moms out there from all of us!

Corneal Erosion

As you can guess from the title, what Bertrand has been diagnosed with? Yup, corneal erosion. Due to his alacrima (lack of tears) his own eyelids are acting as sandpaper across his corneas, wearing them away and exposing the corneal nerves. This is an extremely painful condition.

Typically, symptoms include recurring attacks of severe acute ocular pain, foreign-body sensation, photophobia (i.e. sensitivity to bright lights), and tearing often at the time of awakening or during sleep when the eyelids are rubbed or opened. Obviously, Bertrand couldn't tell us about the pain, have the tell-tale watering eyes, or rub his eyes, hence delaying the diagnosis.

The erosions on both eyes were finally found by his ophthalmologist using the magnification of an ophthalmoscope, along with a fluorescein stain and a blue-light. Mis-diagnosis of a scratched cornea is fairly common, especially in younger patients.

Given that episodes tend to occur on awakening and are managed by use of good 'wetting agents', approaches to be taken to help prevent episodes include:

Environmental

• ensuring that the air is humidified rather than dry, not overheated and without excessive airflow over the face. Also avoiding irritants such as cigarette smoke.
• use of protective glasses especially when gardening or playing with children.

General personal measures

• maintaining general hydration levels with adequate fluid intake.
• not sleeping-in late as the cornea tends to dry out the longer the eyelids are closed.

Pre-bed routine

• routine use of long-lasting eye ointments (e.g. lacrilube/Polyvisc) applied before going to bed.
• occasional use of the anti-inflammatory eyedrop FML (prescribed by an opthamologist) before going to bed if the affected eye feels inflamed, dry or gritty

Waking options

• learn to wake with eyes closed and still and keeping artificial tear drops within reach so that they may be squirted under the inner corner of the eyelids if the eyes feel uncomfortable upon waking.