Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Formula v’s food?

Formula v’s 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.

Immediately, his eyes lit up. Encouraged by this, I kept going.

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.

We have never looked back.

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.

Most importantly, since moving to BD his hospital admissions have significantly reduced and recovery from colds etc., is far quicker.

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.

After all, when having to justify feeding real food to our children over synthetic formulas makes no sense at all.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

View Carolyn’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...