Lauren's new, strong heart continues to do well, and the cardiac transplant team couldn't be more pleased. Our only issue from a cardiac standpoint lately has been the annoying early morning blood draws to check her blood levels when our mail-order pharmacy switches between generic and name-brand transplant medicines.
From an overall standpoint, however, Lauren hasn't been doing as well lately. We've suspected for some time that she has some sort of GI condition that's keeping her from properly absorbing her foods. After not gaining anything for more than 9 months, she finally gained weight last summer after needing a dose of steroids to get her asthma under control. Unfortunately, she's been steadily losing weight since then. According to our home scales, she dropped from a little over 22 kg (48.5 lbs) down to less than 17 kg (37.5 lbs).
Her energy level has been suffering, too. If we go anywhere that requires walking, she rides in her stroller/wheelchair. When we went to Disney World in October, she only got out of the stroller long enough to take the few steps to get on a ride.
In December, we took Lauren to the National Institutes of Health in Bethesda, MD for a series of appointments with her old neuromuscular doctor. He found that her muscles actually look better on ultrasound than they used to. His only explanation for her worsening endurance is that she's not absorbing enough food to give her the energy she needs to play or walk or do therapy. We returned to Arkansas more determined than ever to find the cause of her GI issues.
At this point, her GI doctor suspects that she's dealing with eosinophilic esophagitis (EE). Basically, she has eosinophils (rogue white blood cells) in her esophagus that keep her from properly absorbing foods. We're not sure if they're related to her transplant medicines or to foods. There's often an allergic component to eosinophilic conditions. Her local doctor recommends that we look into getting an appointment for her at Cincinnati Children's Hospital because they are highly regarded as some of the experts in this field.
While we wait for an appointment there, we're pressing forward with a food elimination diet to see if it'll help. Our hope is that Lauren can start to regain some of the lost weight and perhaps more importantly regain some of the energy that she hasn't had lately. As of a week ago, she's on a diet that eliminates all milk, eggs, wheat, soy, nuts, and fish.
It's too soon to tell whether the diet is making a difference weight-wise and energy-wise, but Lauren's doing a good job dealing with the restrictions so far.