At my wits end! Need this kid to start EATING...

amother

Aubergine

Thu, Jul 30 2020, 9:34 am

I like Ellyn satters division of responsibility in feeding. Mom decides what and when to eat (times and food options ), kiddo decides what and how much ( which option to choose from, how much of each thing). Under this model you would only offer foods you are ok with her eating. The assumption being that when she is hungry enough she will eat. And they will learn that if they strike, the foods they want will NOT be following. BUT an obvious prerequisite is that the child feels normal hunger.

Said another way, if a mom needs to restrict a kids diet, you simply remove the offending food. Pretend she is allergic. She may be picking up on your ambivalence. Give it at least 3 days to a week with none of the formula. Maybe even expect some weight loss, seems like you have a cushion. Offer plenty of alternatives. Not necessarily substitutes, just foods you think she’ll like. My kid on chemo went for spicy, salty stuff. Cheese, hot peppers, olives, pickles. So delicious makes a sugar free coconut milk ice cream. If after a week she still isn’t eating normally or has lost too much weight, reconsider. If this feels too harsh or judgmental, I apologize, it’s not my intent. And if you’ve already tried this, pls disregard.

Another option is to blend and tube the rest of whatever she doesn’t eat. And I agree with round the clock nausea medication. And just in case you don’t know this, there are real food blends commercially available for enteral feeding that are keto compatible. That may be easier on her stomach than formula. Would drs agree to a digestive enzyme?

amother

Amber

Thu, Jul 30 2020, 11:40 am

amother [ Aubergine ] wrote:

Please do NOT follow this advice before okaying it with the doctor who manages your child's care!! Extra weight as a cushion may be lifesaving in the event a child has an infection, and no feeding restriction should EVER be attempted with a medically fragile child without doctor approval!!

This is the quick and easy way to end up on tube feedings long term!

amother

Aubergine

Thu, Jul 30 2020, 11:51 am

amother [ Amber ] wrote:

obviously not against medical advice. It sounds like the team wants her switched over. It’s just a matter of what takes priority over here... the kid is not going to suddenly start eating or taking the optimal formula as long as they know that the one they prefer is available if they hold out long enough. Usually it doesn’t even take such drastic measures. Kid just needs to know you mean business. Remove the formula and their appetite will suddenly kick in. This was actually a missing piece for us when we were weaning off a feeding tube. Appetite is the single biggest factor in getting a kid to eat. And formula stifles naturalappetite

amother

Honeydew

Thu, Jul 30 2020, 11:57 am

the thing is that with chemo, you can't try regular tricks that you would try with reg children who are picky or have other feeding issues or low appetite.
Yes sometimes they will crave spicy, sharp food like pizza, super snacks because chemo kills taste buds & everything taste like cardboard so they need strong flavors to feel taste, even if normally they don't like spicy.

You try to get them what they crave , then they push it away because their tastes, appetites, moods changed or the smell made them nauseous.

Sometimes they have only 3 foods they would eat, until they get disgusted from it.

My dc would sometimes throw up just from hearing the word food. I would come to hospital & ask him what are you going to eat now & would yell "Don't even talk to me about food"

When on steroids they eat crazy amounts of food, never feel full & literally act crazy when their strong cravings are not fulfilled.

Join organizations, so you can get support from other moms or join private forum here.

It's tough. I am with you!

amother

Mauve

Thu, Jul 30 2020, 12:23 pm

dankbar wrote:

I was confused, I thought she's exclusively on formula, but now I chap that she is also on food & you are trying to reduce formula to minimal amount.

Yes, I should have clarified. She's eating food now too Bh.

Ectomorph, I agree with you. We dropped our nutritionist and feeding therapist. I know my kid best and was ultimately able to work on it myself more effectively. Bh my dd is in a much better place now than ever. She eats a nice amount, asks for food, etc.

She's also on a very restricted diet for health issues, but we are seeing major improvement. I never wanted to push her to eat anything or even bribe/praise her for eating bec I didn't know how she was really feeling.

Op, have you ever checked out Ellyn Satter? This was a big part of what helped us.

ectomorph

Thu, Jul 30 2020, 12:45 pm

amother [ Honeydew ] wrote:

Yes, I'm with another Amber. Regular tricks often don't work with kids who have zero appetite. If I took away lollipops, for example, my child would have happily starved. He didn't enjoy eating and never felt hungry, so restricting food would reinforce in his mind the food avoidance.

amother

Aubergine

Thu, Jul 30 2020, 12:49 pm

ectomorph wrote:

its gonna be impossible to tell where ops kids appetite is at if she’s always filling up on formula. Btdt.