Last Thursday, we visited Bambino's pediatrician for his 15-month check. He was due for a couple of inoculations. We delayed getting a couple of the live vaccines, as advised by his Immunologists due to the supposed allergic reactions so he won't get those until he's 18 months of age.
What shocked me at this visit was Bambino's weight. At 16lbs1oz, he is 11 ounces lighter than at his 12-month check up. I thought it was the recent bout with gastroenteritis that did this to him, but the doctors reminded me that he also loses calories and moisture through his skin. And it's true because he's been having a bad couple of months. He's had two major breakouts in December alone. His skin is weepy most winter, and the itches keeps him up most nights he rarely gets quality sleep. We were warned before that winter would be bad for his skin condition - especially the very low humidity here in SoCal.
He only grew half an inch in length since October, too.
At a Mommy & Me class, the moms were amazed when they learned that my Bambino is 15 months old especially when they see him prancing around. They would initially thought he is just around 6 or 8 months. He was the smallest baby in that class, even smaller than the 6 month-old ones.
One of the most disconcerting symptoms of Netherton Syndrome is failure to thrive (FTT) especially at the first two years. I guess we are lucky that Bambino eats and feeds ok. He could do better, but I am not complaining. He still nurses 90% of the time, he is on elemental formula (Neocate & Ele-Care) to supplement breast milk. He eats some solids but due to his vulnerability to allergies, we couldn't give him just anything. He can only eat rice, carrots, peas, turkey, cheerios and bananas. Even the GI doctor the we consulted to help him to gain weight threw in the towel saying her colleagues, the Immunologists, got her hands tied.
He is being referred to see an Occupational Therapist next, to help him eat his solid foods better. Currently, he is being seen regularly by a Physical Therapist and a Child Development specialist.
We didn't expect this journey to be easy. My hope is that Spring will be a better season for him, and it's just a few weeks away.
And if Spring would be as bad, there will always be Summer.
