There is an apparent and obvious discrepancy in the amount of food Liam should eat versus how much his body will let him eat. Yesterday he had his 6 month check up with the GI at their satellite clinic in Wilmington. We were supposed to have an endocrinology appointment immediately following the GI, to talk about his growth, but they had to cancel.
Imagine my surprise when the practitioner told me she does most of her work with endocrinology!
We talked about Liam's height and weight issues. He is only growing about 3-4 cm a year. The average child grows 7. While his slow height growth doesn't set off any alarms (children with CP who can't bear weight don't get good growth) it's his weight that seems to be the detrimental factor.
And while I thought we were doing great with his feedings (he hasn't vomited in months and we are now up to 5 oz at a bolus) he still isn't getting enough. He is holding steady at 25 lbs and has been hovering at the 24/25 lb mark for the last year.
Liam gets 3 cans of formula a day (about 24 oz of formula plus 7 oz of water) and they want to him to get 5 cans (40 oz of formula plus 10 oz of water).
I don't know how we are going to accomplish this without making him eat all night long while he is sleeping.
According to the NP, Liam isn't getting but 750 calories a day and they want him at 1200.
And if we still can't get him gaining wait with 1200 calories a day, then we will look at growth hormones....which I've heard isn't necessarily a bad thing for kids with significant CP.
So, I am to try and up his feeds as I see fit and hopefully get him at or near the goal within the next three months. The NP in Wilmington is going to see Liam every month and keep a close eye on his length and weight and hopefully we can get this boy growing. Afterall, he needs good caloric intake to grow his muscles as well!
I just hope he tolerates the changes and we can keep everything down.
