Help with appetite

[amor1218]

Hey all. I need some advice on my 3 year old's eating habits. He used to love food. Around October (right around his 3rd birthday) his appetite started to decline. It's steadily been getting worse. He has a cold that started a week ago that's decreased it even more to the point where he is literally eating a few bites of food each time he says he's hungry. We used to offer him whatever we were all eating at a meal, but when my husband and I noticed him eating less and less, we switched to offering him whatever he felt like eating. The problem now is that it's like he doesn't ever want to eat. I spend all day asking him what he would like, asking him to come pick out some food, only for him to take a couple of bites and tell me he's done or he's full. Of course since he's only 3, he doesn't understand if I ask him if the food is bothering him.

We saw the pediatrician and I voiced my concerns. He said it's normal for a kid his age to be picky, and I get that, but this is beyond picky. His doctors aren't concerned because he's not losing weight, but he's not gaining very quickly either. In May of 2017, he weighed 30 pounds. In October at his 3 year well check, he still weighed 30 pounds and his pediatrician suggested pediasure or Carnation instant breakfast. I can't get him to drink any of that. He won't drink milkshakes, smoothies, or anything like that. He drinks whole milk and water...everything else he will take a sip of and then say he doesn't want it. As of the beginning of January, he was up to 31 pounds, but now with this cold, he's weighing 30.4 pounds at home. My husband and I are trying to be proactive to prevent him from becoming malnourished, but it seems like doctors will only respond when there is a problem, not when there could be a problem if he continues on this course. What can I do here?

As far as his Crohn's, it seems to be controlled. He usually has 2-3 formed stools everyday, no blood, no urgency. He's had a couple of issues in the recent past that have resolved themselves. One evening he had severe stomach pain telling my husband and I to "take it out" but it got better after lots of passing gas and about 6 stools. Another day, he passed gas and told me to check his underwear (recently potty trained) and he had passed a glob of mucus with the gas. Other than that, and some occasional constipation type poo (bristol stool chart #1), he acts like a typical kid minus the not eating thing. Any advice is greatly appreciated! Sorry for the novel.

 

[Maya142]

That does not sound good - has he had labs and a Fecal Calprotectin recently? The reason I ask is that kids can be asymptomatic and still have inflammation. Or they can have very subtle symptoms which could easily be attributed to a million different things.

So an Fecal Calprotectin will help you figure out if he does have inflammation in the gut.

Generally 5-ASAs like Apriso aren't enough for most kids with Crohn's. They do work well for UC, but because Crohn's affects all layers of the bowel and Apriso only treats the top layer, they are not recommended as a monotherapy for Crohn's. Some GIs say it's like giving aspirin for a brain tumor - they won't hurt, but they won't help a whole lot.

At his age, even staying the same weight is a red flag. Kids are supposed to be growing and gaining.

If he won't drink Pediasure, have you tried Boost?

The only other thing I can think of is an NG tube. Which sounds really awful and intimidating, but it really isn't. For a child his age, it would be inserted and would stay in. He can eat with it, but would also get supplemental overnight feeds.

My daughter really resisted a feeding tube but eventually, she became so severely underweight and malnourished that she had to agree to one. After one bad night, she got used to it and now she says it's way easier than drinking the shakes.

I'm going to tag some parents who may have more ideas:
my little penguin
Pilgrim
crohnsinct
pdx
Farmwife

 

[Dylrimm]

At the moment he just sounds abit under the weather and won't want to eat much as he's not feeling great. I recommend that you allow him to eat just a few bites and let him say he's had enough rather than try to make him eat more as he will grow frustrated and feel a more need to eat as going for drinks as well maybe give him full fat milk a bit more often if he is accepting to drink it. Hopefully in a few days his cold will go and his eating will gradually increase the more he become feeling better hope this helps nothing worse than a poorly child!

 

[my little penguin]

So a few things
Some three years like to snack or graze all day
So we would use an ice cube tray etc.,,
And put options (fruits crackers etc) that could sit out at his level and they can pick it

Some ibd kids need semi elemental formula
Peptamen jr
Little kids like the eo28 splash that is elemental formula but comes in a juice box style

Your GI can get samples or you can get them from the manufacturer
Not milk so he might be ok with them

Definitely let the GI know about the loss of appetite
Ibd kids need GI input when it comes to appetite not necessarily the ped

Good luck

 

[Farmwife]

That would definitely be a red flag to rgi.
Like MLP said, they're supposed to be gaining even if it's just a little bit.
My grace never had much of an appetite either
but she never put on much weight but yet still stayed the same,
so doctors overlooked it until we got the scope and found out different.
He could be having issues going on that you don't even know about.
As far as food, Grace had formula most of her life but
when she didn't we used to do high calorie smoothies it was easy to do
she loved it and hey, it tasted good to me too. LOL

 

[pdx]

It sounds to me like his Crohn's isn't controlled. I agree with Maya that a fecal calprotectin test would be the first step in looking to see if he has some inflammation in his intestines. My daughter doesn't always show inflammation in her blood tests, but the calprotectin test is a good indicator for her.

If the test does show inflammation, it may be time for a more powerful medicine.

Good luck with figuring out what's going on.

 

[crohnsinct]

Lack of appetite and mucus could signal disease activity. I would definitely get that fecal calprotectin test done and see what it says along with regular blood labs.

If all of the above are normal it could be a few things. Run of the mill toddler pickiness could certainly be one of them. Also, sometimes when the kids are sick they self limit food. Either foods that bother them or all food. Then it takes a while to relearn that eating is o.k. and won't hurt them.

IBS could cause mucus. I am not a huge fan of this dx but when all other things were ruled out (barely ruled out, our doc didn't do a lot) we were stuck with IBS and a lot of those symptoms were exactly the same as IBD...frustrating. Mucus is a huge sign of IBS. HOWEVER, we switched GI's and my daughter's symptoms got way worse and sure enough she is in a flare and also her GI suspects small intestinal bacteria overgrowth. Many IBS dx's are actually SIBO and it is a pretty common thing in people with IBD. Mucus is also a big symptom there as are the other usual IBD symptoms. The test for SIBO is an easy in office breath test.

I wonder if he has a motility disorder that is leading to him feeling full quickly and getting nauseous? Maybe delayed emptying? There are tests for this as well.

All this to say there are a lot of reasons a kid won't eat and when you have a child with a known chronic illness then I think the docs owe it to you to rule out all other possible causes before saying, "oh well he is just a picky eater". Especially when is weight gain has stalled like that!

Good luck!

 

[boysmom4]

How much whole milk is he drinking per day?

 

[amor1218]

Thank you all for the replies! He has a GI appointment on February 26th which is perfect. I can see where he's at after this sickness passes. He has never had a calpro done and I have never thought to ask as he seemed ok and his bloods are always good (ESR was 9 and CRP was 0.5 at his last check in October). He gets them done at every appointment (every 3-4 months). I'll ask his doc about it when we go--seems like now would be a good time to check things out.

I go back and forth between toddler pickiness and a motility disorder constantly. The thing that gets me is he will say he's so hungry, take a few bites of something that he asks for, and then say he's done and doesn't want anymore. If we ask him to take one more bite, he will but gag. I know the pickiness has a lot to do with WHAT he will eat, but when he picks out a food to eat, he's not eating very much before he says he's done, and that's what has us worried. He used to eat a lot, then he started to be a grazer, and now he just nibbles.

He drinks about 3-4 cups of milk per day...usually one at each mealtime, and occasionally depending how early he gets up, an extra cup in the morning.

 

[crohnsinct]

Blood labs can be normal and you can still have inflammation. I have two daughters who almost always return perfectly normal blood labs but have had fecal cal values of over 1000. I would call ahead and ask about the fecal cal based on your concerns and what you are seeing with his eating. It is an easy test and no skin off the GI's nose. You do all the work. It takes about a week to get results back so if you could hand it in at least a week prior to your appointment you will have results back and that will help with your discussions with the GI.

My niece and another toddler I used to watch were just like your son. They would be starving, begging for food, take a few bites and on their way. So it does happen. I just think that when you have a kid with a known disease that could also cause this issue you have to rule that out.

 

[Jmrogers4]

I know of a mom with a picky toddler who mixes the pediasure with milk and her toddler will drink it that way. On the other end my son who was quite a bit older than yours at the time 10-12 would do the same thing say he was starving eat 2-3 bites and say he was full. We certainly felt like short order cooks at the time because we were willing to make him whatever he would eat. This went on for several years with us trying to get more calories into him (putting peanut butter, butter, unflavored protein powder into/onto whatever we could). All labs were normal but he did not gain weight and only grew about an inch or so over a few years time. We finally did an MRE and discovered that he had massive amounts of inflammation in small intestine even though last scopes were clear.
I would definitely bring up concerns with GI, I would think growth velocity should be fairly high at that age so something to check if that has changed.