For two years now, Sam has had a mixed diet of formula together with proper, actual food.
A lot of medical staff and others still don’t accept this as a suitable way to feed a tube fed child, so I thought I’d explain a little about how we got to where we are.
Sam has had a feeding tube since he was 4.
We had planned to go down the blended (BD) diet route, but his medical team weren’t keen, the tube was very slim, so we agreed to trial formula initially. First feed went in... and returned, projected across the room with impressive force.
A second formula was tried. Then a third.
By the time we found a formula he would tolerate and keep down, we were all exhausted and Sam was miserable. A month on formula and my boy was a shadow of his old self.
Thin, pale, severe reflux, vomiting, diarrhoea. A problem with formula supply lead to us accidentally starting BD; I bought some pureed banana baby food and carefully, slowly, syringed it down his tube.
By day two of his new regimen he had stopped vomiting and his bowels were improving.
His eyes were brighter and he started smiling again.
Sam’s dietician and consultant were amazed at the change in him, at which point I ‘fessed up; Sam was doing far better on BD than on 100% formula, however there were issues with school not being allowed to give BD in case of tube blockages etc.
So, we came to an agreement – Sam would have three BD meals daily, and two formula top up feeds during the day while at school.
Today Sam is healthy and happy. He is developing well, and we have been able to tweak his diet to remove problematic foods and to improve his seizure control; best of all, unlike children who are entirely formula fed his weight gain is normal, following the curve you would expect for an orally fed child.
BD isn’t for everyone, Sam has no absorption issues and is tube fed purely because of an unsafe swallow, however it is time that the benefits of this alternative diet are looked at and accepted at a higher level in the medical and dietetic community.
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