I don't think my son feels hunger

[EarthyMamaofDaisy]

My son is almost 3 and has had feeding problems his whole life. He has a rare chromosome defect. One of the things is he has a high arch palate and trouble with chewing and swallowing. He has had lots of therapy and is physically able to eat quite a bit of things now, but I honestlly don't think he feels hunger. He is on Periactin (appetite stimulant) and now eating quite a bit. I'm starting to wonder if he has some kind of disorder where you have no appetite. I tried to do an internet search but didn't come up with anything.

[aris99]

Hi,

My son has severe oral aversions and was taking periactin for awhile when he was 2-3 yo. I found that his appetite increased a bit on the periactin but that this wore off eventually. For my son, I think it was a feedback cycle. He didn't want to deal w/eating, would eat very little, his appetite would decrease and he would feel hunger less and less. So, it is possible that your child could have a disorder that doesn't allow him to feel hunger BUT it could also be the result of simply not wanting to eat. I hope you can get it figured out soon....feeding problems are often SO complicated.

[kati_kati]

is it possible he just doesn't know how to show that he's hungry? or that he doesn't make the connection that food is what he needs when he's hungry? we have that problem with my 2 yo DS - if we wait too long to feed him he just gets crankier and crankier and refuses to sit to eat, when really he must be very hungry (with enough distraction he eventually he eats and is happier). our OT has told us that the food-hunger connection sometimes isn't there for lots of kids (typical kids too) - i have friends whose kids won't ever ask for food, but if you put it in front of them they'll eat it. just a thought.

[EarthyMamaofDaisy]

When he's on the Periactin he actually asks for food. He'll even grab food out of my hand and start eating it. But without it he almost never asks for food. And he is such a happy laid back kid he almost never gets cranky, even when he goes a whole day without food. I asked his OT about it today and she said she didn't know the name of a diagnosis for kids who don't get hungry. She said something about the nerves between the stomach and the brain not working.

[2boyzmama]

Originally Posted by EarthyMamaofDaisy

She said something about the nerves between the stomach and the brain not working.

Has he ever had a CT scan or MRI of his brain? Periactin is a neurological drug, right? I thought it basically "told" the stomach it was hungry because the brain isn't. (But I could be wrong, I need to research it again, I remember it being suggested for my son, but it is contraindicated for people with his chromsomal syndrome because of other neurological issues).

Anyway, I wonder if anyone has looked for an anatomical reason that he might not be getting those messages. A tumor, a cyst, a brain or central nervous system malformation that might be interfering with the passage of interpretation of signals.

[EarthyMamaofDaisy]

He had a CT when he was a baby but it was just checking to see if the head bones were fused yet. We had one neuro consult due to his microcephaly and basically the guys wasted my time. He just said that he didnt' think the microcephaly was affecting his developmental delays, and he had no other insights on Connor's issues. I hadn't thought to check for a tumor or something. I'll bring that up at the next GI or ped appointment. Whichever is first. I'm not sure what Periactin is used for, but I think the doctor said that the appetite stimulant was just a side effect of the drug, and not even it's intended use. Since my son also has a chromosome 22 deletion I'm wondering why it's contraindicated? I know our sons have different deletions but now I'm wondering if it's even okay for my son to have.

[2boyzmama]

I quickly re-looked up periactin to try to remember why I was told it wasn't good for 22q kids. It is an antihistamine, with a side effect of increasing hunger. I remember asking the GI how it increased hunger, she said something about it being neurological, I said "well, you know that 22q kids can have weird responses to meds, particularly behavioral meds, hormones, and steroids" and she said "oh...well I don't know..." and then decided not to consider the med any longer. I mentioned it to another 22q mom I know and she said that her GI (different hospital) said he wouldn't prescribe that drug to 22q kids without consulting with the 22q center at CHOP or calling Dr Shprintzen directly.

I never looked into it further because my Connor's weight gain issues aren't related to lack of eating, he eats, he eats a lot, he just doesn't gain weight or grow taller. At least, not at a "normal" pace.

[camracrazy]

My daughter was on periactin but it did weird things to her moods.

Has your son been checked for reflux? I know my dd ate much better after her reflux was diagnosed and treated. You might also look into a gastric emptying study. It tells you if food is moving through the digestive system at a "normal" pace. If his digestion is slow then that may cause him to feel "full" longer than he normally would.

[EarthyMamaofDaisy]

He does have reflux and is currently on Nexium. It helped a teeny tiny bit, but nothing has given the results that the Periactin is. Now I'm wondering about the moody reaction thing, because the past few days he has been kind of tempermental and that is not his normal personality. I didn't realize 22q kids have weird responses to meds. I need to ask the geneticist if that applies to his 22 deletion, or just the "normal" deletion. Although I'm not even sure if he will know since there is just the one journal article and only 10 kids with his deletion. I am feeling so overwhelmed.

[camracrazy]

When my daughter was on it, she went from having a pretty even temperament to crying over every little thing. It was horrible. For example, if she asked you for a glass of water and you told her to hold on for a second, she would burst into intense sobbing that was hard for her to stop. It was scary! It lasted until she was off the periactin for a week or two, then she was back to her normal self. She has Cystic Fibrosis though, not the chromosome defect you mentioned.

I also wanted to say that once a kid has had a bad reaction to eating something, they usually try to steer clear of it. So if your son had a bad reflux reaction to a food before he was put on the Nexium, he will probably be VERY reluctant to try it again, especially at his age. Sometimes they just don't understand "it hurt before, but now that you are taking this medicine it won't".

I hope you can find an answer. Not knowing what to do is so difficult!

[BetsyNY]

Does he have any sensory issues? Because that can wreak havoc with thirst/hunger sensations too.

[EarthyMamaofDaisy]

The only sensory issues he has is with texture of food. I think it's because he was on an ng tube as a baby. But with the Periactin he will eat almost anything I offer him. Although he still can't/won't eat unpureed fruit. He did attempt to eat a slice of strawberry this week though.