Sunday, June 7, 2009

Two Can Play At This Game.....


Rhett has been eating by mouth really well the last few months.

So much in fact, I haven't been using his g-tube except at night every now and again, and of course for meds.

We rely heavily on his g-tube for meds. He is awful at taking them.

Ever seen Spiderwick Chronicles where Hogsqueal spits in Jared's face to give him "The Sight"?

Ya. That's pretty close to exactly what Rhett does when you stick any type of syringe into his mouth.

But for serious, do you blame him? Not only does he have some awful tasting meds, but he has had so much of them, that he is pretty much traumatized for life.

I can just see him now, an old man with no teeth...(cuz his teeth are crap now, so they will probably be rotted out of his head when he is all old and wrinkly too.)...spitting his meds all over us. By then I'll be old and wrinkly too, even more so and I'll probably be senile as well, so I'll just smack him on the head with my purse.

Who knows? Maybe between Andy, Rhett, and I, we will all have three recliners in a row in our living room, and each have our own oxygen concentrator sitting beside each of us. It will be like our own little symphony of oxygen.

Humm, Humm, Poof, Humm, Humm, Poof, Humm, Humm, Poof.

Maybe I can spit my meds on him too.

Dang. I have so much to look forward too. I am getting overly excited here......

So anyhow, the G-tube.

We haven't used it for feeds much, but lately Rhett seems to be developing an oral averison and I'm not quite sure why. There are only certain things he will eat, and I know he's not getting the nutrition he needs, because he is starting to loose weight. He is down to 31.8 lbs from the 33 lbs he was a few months ago.

He has a fascination with chips. Or as he calls them blips.

He will eat blips all day if you will let him. The second his beady little eyes are open each day he is asking for blips. He loves blips and salsa. He can't get enough of that stuff.

He also likes Chicken in a Biscuit crackers.

Those seem to be his staples in life.

He will still eat bread, and will eat a peanut butter and jelly sandwich every day of his life if we would let him.

That and fruit. He is in love with peaches.

But that is pretty much it. He has never really eaten meat, but he used to love carrots, corn, green beans, fruit snacks, cabbage, cauliflower, pizza, spaghetti, mac and cheese, and eggs. But now he just refuses them. Turns his nose up, and throws them on the floor.

I get so sick of just watching him eat chips.

I have withheld them from him to see if he would eat a meal, and he still refuses.

This has been going on for about 2 months now, so today I decided that his minimal diet needed something more. If he wants to play the "I don't want to eat game," then I will play the "You are totally back to bolus feeds through your G-tube during the day buddy, game".

He's gotta have some type of nutrition don'tchya know.

I know some kids go through spurts where they will only eat a certain food, but this has gone on for so long, and I have been trying to get him to try different things, and failing for so long, that I have taken things into my own hands.

My only thought though is this. Is it just a phase? Or is it something that I need to address with his GI dr, or his ped?

I know they are going to tell me just to continue what I am doing, but could there be a reason that he doesn't want to eat? I don't want to put him through more testing, and any time I bring something like this up with any dr, they always err on the side of caution given Rhett's history, and will poke and prod him to no end, just to be on the safe side.

Some days I want him to just "be" ya know?

He tolerates his feeds well, albeit he needs a little more burping, which is fine, I don't mind venting him one bit. His stools are normal, he has normal wet diapers, even more so now that he has his diuretics on board again....holy schmoly can that kid pee.

I dunno know what to do. He has been really grumpy, like head spinning in circles grumpy, for the last month, but I wonder if it is related to this or if it's all behavior.

He misses school. He asks to get on the bus every day.

He will start summer school on the 16th of this month for a few hours two days a week, so I am hoping that will help.

Do I read into things too much?

Sometimes I wonder if I should just leave him alone and let him be a typical kid. But he's not typical health wise, and some things can't just be overlooked.

Maybe his recent heart issues are at the center of all of this not eating stuff. In fact now that I have emptied my brain, it makes sense. When he had his heart issues before his surgery we struggled to get him to eat as well. He had little if any appetite.

For Pete's sake he was only 7 lbs at 4 months old.

Huh. Maybe I answered my own questions.

Have you ever had a kid who stopped eating for no apparent reason?

I would love to hear your experiences.

13 comments:

Lacia said...

All of my kids have gone through a no eating stage, with Pierce being the worst. He actually started out with not eating. He never touched baby food. I tried and tried and tried, but he would refuse. If I did manage to sneak some in his mouth he'd gag and throw up. I gave up on it and just fed him formula. Once he was able to eat "real food" and feed himself, he ate a bit better, but still VERY picky. We had weight issues with him (between the age of 6 months and 11 months he gained 2 oz, where he should have gained at least a few lbs...or 10)and he was tested for everything under the sun with a failure to thrive symptom attached to it. We did pee tests, poop test, blood tests, sweat tests, everything. Nothing came up.

He eats alot better now, but still VERY picky. So i'm no help for you in this regard. I would say it's probably a phase, and keep plugging away, but with his history you may just want to check it out....just in case.

ChristophersHeart said...

Personally, given his heart I would give your cardiologist and GI a call. Loss of appetite can be totally related to decreased heart function. And it can also just be a picky little kid thing. But I would want them to know and to keep a careful eye on it. I imagine they would just want him weighed more often and they will ask you to increase his gtube feeds.
My son (a heart hero like your little guy) has always been a terrible eater. He's been failure to thrive forever, oral aversions to nearly everything and struggles to gain any weight cause his heart works so hard. He's getting a gtube on the 16th so we can end the battle and hopefully help his weight.
Good luck!
Wendy
Mom to Chris with multiple CHD's.

Lacey said...

I can't imagine trying to give a kid meds with no tube. We've always had one, the NG and then the G. Makes life a lot simpler. I wish I knew about the eating thing. Tanner doesn't eat hardly anything, but I know thats also an autistic thing. I bet is could be the change in schedule, and of course hear issues always mess everything up.
Can't wait to see you Saturday!!

The Simmons Family said...

Pam.. I think Rhett is just a normal little toddler that is a picky eater. Kamryn was perfectly healthy and lived on Grilled Cheese and Peanut Butter.. that's it. She turned out fine!!

I think that we get so wrapped up in the medical world and GI telling us exactly what our kids need and how much. It's stressful on them. Also, when they don't feel good cause they're having an ick day with tubes and meds they just don't feel like eating a whole lot of healthy stuff. I know when I don't feel good.. bring on the chips and chocolate! :)

A heart mom once said that her son would only eat "Kid food" and no veges/fruit/meats and the Dr. said..."it's the ONE pleasure THEY have control over.. .let them enjoy it!"

It's true. A HEALTHY child with no medical issues can be pushed to eat healthier and they may, or may not. I think kids are little, let them be little. As long as he's getting nutrition in his GTUBE or pediasure.. let him eat as many chips as he wants :)!! Why not?!

COOLWHIP said...

Eva's food of choice is 'naps' or butter snaps for short. If we don't have those, any pretzel will do. When she was younger, and hadn't experienced the 'nap' she would eat yogurt and bananas all day. Now, hot dogs and snaps. We lucky can starve her during the day (which is code for not feed her snaps and hot dogs. ) and she'll eat a pretty decent dinner. Or at least the fruit part.

Niksmom said...

What you described, Pam, is not just a typical stage of picky eating. We went rhough something almost identical. Nik stopped eating COMPLETELY for more than two years.

He's eating like a pig again so I can tell you there's hope. I'll email you more b/c it would take pages in your comments. Hugs.

Colleen said...

Well, I've never raised a child, nor will I, but I do know about kids being picky sometimes! My niece will eat almost anything, or at least try it. My nephew, who will be 2 in a couple weeks, is really picky!! My sister tries giving him a variety of things, and while he does eat, there are just some things he refuses. I was wondering if Rhett could have something like Ensure, or Boost, or something like that when he's being so picky. Maybe ask his doc? I can't imagine just wanting blips all the time!

Anonymous said...

Ugh, I'm sorry you're always faced with situations like this. His current eating pattern sounds totally like normal toddler behavior, however I hate to say it, but with kids as extraordinary as Rhett, how often do they do 'normal'?

I would continue to do what you're doing, giving him what he'll eat, always trying for more, but I would also call his cardio and ped a call. Ugh, I so hate to tell you to subject him to more testing and such, but we really want to you keep a close eye on him, he's one important, inspirational, kiddo to us!!

T.

RK said...

Hey Pam...feeding is such a weird things with these kids of ours, isn't it? Though Braska's been tube fed since birth, she did eat solids (baby food) from about 7 months til about 10 months. Then she stopped. Literally from one day to the next she wouldn't eat. Since she's always been very underweight, we can't do caloric challenges and such to try to "make" her eat. She will go a whole day with no food and never even fuss about it. In the last 4 months, she's made some decent strides, getting better at this point than she's been in over a year. BUT one little thing can trigger her to go days refusing all food. And it can be such a little thing.

So I don't have the answers, but I do understand the frustration... and our rule for Braska is "if she will eat it, she can have it." Nutrition is covered with the bolus Pediasure feeds during the day, so beyond that, for now anyway, she can eat whatever she wants. Luckily she does seem to be diversifying a bit. But I always wait for the "next shoe" kind of thing...I kind of expect her to stop eating any day, just because that's what she's always done. But we have hope!! That's the best we can do! :)

Tommy's mommy said...

Pam,

I vote for the chips :) I figure with any of my four kids let them eat what they will eat. For Tommy we sneak the milk and meds in his gtube but whatever he will eat have at it. Life is short, for all of us. Chips n'salsa has my vote. Hang in there. You are one fabulous mommy!

caorlscrazycorner said...

Emily is by far most picky eater. She likes things one day and then doesn't the next. She went through stages were she would eat only one thing then get sick of it. She liked cheese. plain yougart, mac and cheese(the kind in the box),gas sation hotdogs. She also like mayonase sandwiches. She 10 and still a picky eater. She eats the school lunches. I myself like things for awhile then do not like them at all. Abigail is a better eater then emily and will try more things.Carol

My Three Sons said...

Well you should know my story. Carson stopped eating after getting his tonsils out but we later have figured out it is severe acid reflux.

My new problem is making Carson leave the port alone. He keeps opening it and it leaks everywhere.

Now I have a silly question for you, when you are giving Rhett meds through his NG (I know, going down memory lane), did you ever have problems with the other port opening and the meds going everywhere? I'm getting nervous thinking the tube isn't in place but I can hear the swish when I push in the air.

The Bryant Family said...

Tucker has gone throug a stage or two of eating everything to eating nothing and back to everyting again. We have gained 1.9 pounds since our tonsil/adnoid surgery...thank goodness. He east cookies "keys" as he calls them for breakfast...he eats pretzels all day long but we still introduce and have supper and lunch and breakfast for him to eat as well...if he eats great, if not that is OK too. They will not starve themselves...I promise, unless something medically holds them back from eating. I agree that sometimes we always look to find something medically wrong when they are just being picky toddlers like ALL toddlers are.
THe GTube thing...Tucker didnt take his meds by mouth until we actually pulled the tube from him. (professionally done but you know what i mean) we were not using it either, it was a source of infection and constant struggle to keep looking good so we had it pulled and then worried about taking the medicine by mouth. TUcker has captopril, digoxin, levothroxine, clariton all to take each day, twice a day....and he now takes it without a fight. We had to struggle at first, I know it has to taste gross....but now he takes it and moves on. (we used to have to bribe him with POP but not anymore)
Hang in there. RHETT is adorable and is doing so good.

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