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

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amother

Wed, Jul 29 2020, 11:39 am

Ok, it’s more of a vent, but I’m open to suggestions...

My 3 yo has a very low appetite (medically) and barely eats normal food. She ends up filling up on formula shakes which I so want to stop because it ends up being a chain of her not eating after... also, she’ll gulp down the formula in 2 minutes (quite a lg amount) and then yell her tummy hurts.
Can't Believe It

amother

Mauve

Wed, Jul 29 2020, 11:45 am

We were in a similar cycle a few yrs ago, when my daughter was same age as yours. It was a really long and slow process, but she's 5.5 now and only drinks 8oz of formula a day.

Do you have a nutritionist or feeding therapist you work with?

amother

Lavender

Wed, Jul 29 2020, 11:52 am

Small frequent feeding.
Give her a smaller amount of formula at a time but more often so she gets the same amount but can't chug it.
Offer foods before formula.
Cold/sweet/finger foods work best.

Recommend seeing a feeding specialist.
Good luck

amother

Aubergine

Wed, Jul 29 2020, 1:06 pm

Can you replace the shakes with home made nutritious stuff?

We broke the formula cycle by cold turkey replacing formula bottles with water.

Also, zinc and high doses of thiamine can help regulate appetite, as well as an rx called cryptoheptadine.

amother

Honeydew

Wed, Jul 29 2020, 1:18 pm

amother [ Aubergine ] wrote:

When my dc lost tons of weight, and had no appetite due to chemo & he needed to gain weight, we BH managed to avoid feeding tubes & didn't use formula either but kept on encouraging to eat by offering food he liked, every so often. Also used this med to build up his appetite. Kept on zofran around the clock. Little kids push away the plate of food when nauseous & don't always express how they feel.
At 7 yrs old he weighed 37 lbs. BH 2 years later, he had gained 20 lbs in between.
Hatzlacha.
P.S. when dc was on steroids he couldn't stop eating. It was a cycle of blown up balloon to skeleton like figure.

Woman of Valor

Wed, Jul 29 2020, 1:35 pm

amother [ OP ] wrote:

A child her age (and most of us!) needs 3 meals and 2 or 3 snacks per day but the meals can be smallish. Maybe make a visual schedule, have her help prepare the meals, have her help plan her menu, put the formula in small sippy cup so she can't have too much, and also don't give attention and emotional energy to the NOT eating - also maybe make a rule that the formula can be one of the snacks, or breakfast, but can only be had during ONE of those 5-6 eating times, not more. hatzlacha!

dankbar

Wed, Jul 29 2020, 1:36 pm

amother [ Mauve ] wrote:

8 oz per meal or only 8 oz for entire day?

amother

Royalblue

Wed, Jul 29 2020, 2:00 pm

I had a child who also wouldn't eat. M pediatrician's advice was useless. In the end, I came up with my own "feeding therapy": I fed the kid junk like ice cream and sweets. Once he was enjoying food I slowly introduced other healthier foods.

amother

Wed, Jul 29 2020, 2:20 pm

Thanks everyone.
In reply to some of the posts- here’s more of the situation which makes it challenging...
Dc is on a chemo which affects appetite so I can never be too pushy because I cant know how she’s really feeling Sad

.
She’s also on a special diet so the food options are modified & limited. But I still give her plenty of choices so that’s not the issue (meaning lack of what she can eat, just more effort on my part which makes it more frustrating when it’s refused).

We’re working with 2 nutritionists. Formula is a healthy formula but not one that’s a good match for the diet but she refuses the ones that are ok after spending a ton of $ on so many options- she just took one sip & shuin Sad

(I don’t blame her on that...) but it’s another reason I want to avoid the formula as much as possible.

We also tried homemade shakes which she barely took 1 sip of...

Vitamins are out. Oncology doesn’t want her on any supplements as it’s an investigational drug & no data on how things react.

She has a feeding tube but fights feeds & I really don’t want to just tube her when I don’t know how she’s feeling & maybe she’s just not eating because she’s feeling really awful?

Hard to know with a toddler when it’s medical or when it’s just good ol’ Toddler behavior...

amother

Aubergine

Wed, Jul 29 2020, 9:06 pm

amother [ OP ] wrote:

what is your goal here with getting them to eat food vs formula? Nutrition? Just normal behavior kind of thing? Because with a child this medically complex I would think any oral calorie is a good calorie no? If it’s the special diet, what happens if you just remove it as an option? I’m guessing you tried and child didn’t meet calorie goals? Well then, what’s your other option? We weaned off a feeding tube to formula and then off formula to food at about that age using a hunger based approach and were given guidelines for how much to cut at each phase. But my child was ready for it too. No longer nauseous, good relationship with food and eating, capacity for normal appetite. Otherwise you are setting yourself up for failure. Is child on anti emetics?

studying_torah

Wed, Jul 29 2020, 9:30 pm

First of all- so sorry for this awful situation & r"s to your child!
Can you offer the formula/shake as a bribe if she eats x amount of food?
Is the chemo causing a metallic taste in her mouth that prevents her from wanting to eat?
Sour foods or drinks can counteract that.
Can dd try another anti nausea- maybe reglan (it works differently than zofran)
What about fruit ices or ice cream made from yogurt and fruit puree?
Or by contrast dry foods like muffins or crackers?

amother

Mauve

Wed, Jul 29 2020, 9:56 pm

dankbar wrote:

8 oz per meal or only 8 oz for entire day?

8oz for the entire day Bh.

Chana Miriam S

Wed, Jul 29 2020, 9:58 pm

Refuah shlemah!

dankbar

Wed, Jul 29 2020, 10:44 pm

amother [ Mauve ] wrote:

8oz for the entire day Bh.

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.

Kiwi Bubby

Wed, Jul 29 2020, 10:50 pm

Is it so bad to just let the formula fill all her caloric needs? Is it necessary to give her real food? It sounds like she’s going through alot right now. If formula fills her up and meets her nutritional needs, I don’t see why you can’t leave it alone for now and try again later.
You can also offer cookies and ice cream or whatever she likes meanwhile so she doesn’t lose ground on actually eating food too.

amother

Honeydew

Wed, Jul 29 2020, 11:01 pm

Right now, while she's on chemo, there is not much you can do. Try to keep her on 24 hr zofran or other med to ease the nausea. If she is on feeding tube then she is getting her nutrition to survive. IYH, when she will be done with treatments, you will focus on building up her appetite again & help her regain the weight she lost. Also when you do feed her, try giving her hi caloric food like ice cream, butter, etc.

amother

Thu, Jul 30 2020, 12:25 am

To clarify-
1) I’m not concerned about nutrition/calorie needs. Weight is fine too. Been consistent.

2) the main reason I want to limit the formula is because even though it’s a healthy formula it’s still not compatible with the diet. She needs to be on this diet for the chemo to be more effective, and as mentioned above she refuses all other ‘milks’.

3) I don’t object to the feeding tube (I was the one who asked for it LOL

) but she objects, & it obviously makes her uncomfortable. It would be very easy to just tube feed her the stuff that’s diet compatible and make my life a lot simpler. Both nutritionists agreed we should avoid this route.

4) she loves cookies and ice cream and cake but those she can have only in moderation as she’s very limited on amount of carbs and sugar.

5)honeydew- bh she’s handling the nausea quite ok and has not needed medication for it. It’s not a very intense chemo but it is more of a long term thing.

6)@studyingtorah- I don’t know if it’s causing a metallic taste because it’s hard in this age to express feelings. The adults on this are having a very hard time with these side effects, so I really don’t know...

7) I’ve tried plenty bribes & videos and what not. No success so far Sad

Thanks everyone! I’m still open for suggestions, please keep ‘em coming... it’s a complex situation, but hey- maybe someone will hit the lotto!. (Otherwise I would NOT be sharing all this personal info...)

FranticFrummie

Thu, Jul 30 2020, 12:46 am

Refuah sheleimah to your little one!

When DD was not eating well, I broke my number one rule, and plopped her in front of videos. I put a plate in front of her, and then ignored her. I didn't say a word, no bribing, praising, begging, nothing. There was zero pressure. If she didn't touch the plate, then we tried again at the next meal.

Within a couple of months, she was finishing every single thing on her plate, and then would look down and be surprised that it was gone! (I still do that if I'm watching a movie, LOL. Note to self, eat dinner without the screen, or you'll over eat.) Make sure that everything is cut up into tiny bites, and that it can be finger food.

With the tube, maybe the food is going in too fast, and giving her tummy cramps. Try doing half a feed, and only half as fast. See if that is more comfortable to her. Before you start, explain to her that you are going to do it different this time, and that this is supposed to feel better. Even if she's not very verbal, she will understand what you are saying.

It must be so hard to watch your child be uncomfortable and ill. Just the thought breaks my heart. I'll be davening for you, for her, and your whole family. Hug

Stars

Thu, Jul 30 2020, 4:34 am

If the tube feeds are making her uncomfortable it might be too much too fast. Try slowing it down and giving less at a time. Also I would keep her on a anti nausea med 24 hours even if she doesn’t vomit or complain of nausea.

You can also try looking for cake/cookie recipes that follow her diet.

ectomorph

Thu, Jul 30 2020, 8:19 am

We have a child w some health issues who had zero appetite. There was a time he liked lollipops so he had endless lollipops. Eventually he transitioned.

Your goal is for the child to be used to the concept of eating / drinking so that , when the time comes, they can more easily be taken off tube feeds. If lollipops are what they'll eat, better to eat lollipops so that they are at least eating something.

Feeding problems take tremendous patience. They do not just disappear. You will eventually figure out what motivates your child and what works for them - sometimes a feeding therapist can give you ideas, but in my experience an involved mother figures it out before the feeding therapist does.

Feel free to PM me... We aren't quite over this parsha yet, but things have improved tremendously and I can see the end is in sight. My child recently began expressing hunger and now asks for normal food on occasion, besides eating normal meals at times. It's a wonderful thing to come out of the other side, and you'll really appreciate normal kids who eat after.

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