Messy Eaters?

[Guest guest]

Are any of your Mito children messy eaters? My son is 5 1/2 and is

the messiest eater I know! He's always been that way, since he

started self feeding as a toddler. He drops his food and silverware

on the floor, he makes a mess on himself, he mixes his food

together, and makes a huge mess on the table around his plate. What

is going on?

He also used to be a voracious eater, up until the past six months

or so when he started eating less and less. Now he's down to eating

one meal a day, and drinking Pediasure mixed with whole milk the

rest of the time. He likes to snack in little bits (and I do mean

*little bits*!)during the day. He complains that he's sick all the

time and has a bloated stomache. Is that delayed gastric emptying?

Should we see a Ped GI for something like that?

Thanks for your help.

e *Ü*

[Guest guest]

Sounds like some OT would help a lot.

lost the ability to chew with his mouth closed but that was a low tone issue as his disease progressed.

the loss of appetite is generally not linked to delayed emptying unless he only ate with gtube, then maybe so. Seems like many of the kids have periods of losing thier appetites. Just making sure he is getting adequate nutrition and keeping his wieght stable is the main objective...

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.com

[Guest guest]

e,

The description of the drop in eating sounds so much like my Asher (3 1/2 yrs. old, complex III deficiency, possible Complex I as well). Ash is assumed to have gastric dysmotility - whether it's happening in his tummy or his colon we don't know, altho I assume the colon b/c he is able to tolerate his g-tube (now mic-key button) feeds well. His tummy would get so bloated and he slowed down eating until he was literally starving to death. After much difficulty and, at first, saying "we will never do that", we made the decision, at the strong recommendation of our GI doctor and Shoffner, to have a g-tube. It has literally changed Asher so much - he now gets enough nutrition to have energy to enjoy his life. I'd recommend seeing a pediatric gastroenterologist for a number of reasons - the primary one is that he/she will monitor your son's weight and make sure that he is growing as he is supposed to (a big sign of his nutritional status); I have found that many other doctors (pediatricians, neurologists) would simply look at Asher and say that he was "fine" weight wise or would not be too concerned about his lack of weight gain. The GI doc is obsessive about his scale (so you know it's accurate) AND he takes weight issues seriously. At least our GI doc does. While the other doctors were saying "oh, he's probably okay", our GI doc was saying "he's not!". And, the labs taken during Asher's biopsy by Shoffner, showed severe malnutrition.

It is good that your son is taking the Pediasure. Asher's problems got much more serious when he even stopped the Pediasure. In terms of messy eating, I don't know, but I wonder if he's using those messy behaviors to avoid eating when it hurts. Just some thoughts.

Anne R

[Guest guest]

yes Logan is a very messy eater he has very poor toungue control and and lip closure is terrible. i have found going through the feeding therepy to be patient and lots of hard work on my part. i have to help feed him at least 1 entree per meal and let him eat the rest.you might talk to your speech therapist if you see one and have them help you with this situation lots of luck.

Jennie proud mito mom of Logan 2 yrs olde wrote:

Are any of your Mito children messy eaters? My son is 5 1/2 and is the messiest eater I know! He's always been that way, since he started self feeding as a toddler. He drops his food and silverware on the floor, he makes a mess on himself, he mixes his food together, and makes a huge mess on the table around his plate. What is going on? He also used to be a voracious eater, up until the past six months or so when he started eating less and less. Now he's down to eating one meal a day, and drinking Pediasure mixed with whole milk the rest of the time. He likes to snack in little bits (and I do mean *little bits*!)during the day. He complains that he's sick all the time and has a bloated stomache. Is that delayed gastric emptying? Should we see a Ped GI for something like that? Thanks for your help.e *Ü*

Please contact mito-owner with any problems or questions.

[Guest guest]

Dear Ann,

Thanks for the advice. I don't know what to think about Devin's

eating lately. Today he ate well. By well, I mean he ate more than a

spoonful of what was on his plate, ate some good snacks, and drank

two cans of Pediasure. (he likes the vanilla w/fiber plain out of

the can). I wonder if the increase in eating had anything to do with

the fact that he pooped two days in a row. Sorry to be gross, but

that is a major problem for him. He has chronic constipation, only

going an average of three days per week. His regular ped put him on

Lactulose, and after much trial and error, found that it made him

more sick. His stomach bloated, he didn't eat, and had no energy. I

just stopped it over the weekend, and he was back to his 'normal'

self. So I stepped up the fiberous foods, and we'll see what

happens.

We will be seeing a ped gastro on Aug 8th I think for the first

time. I should have done it long ago, but I thought other means

would take care of his loss of appetite, and he'd start eating

again. He used to be a voracious eater, and now this.

I'm glad you also mentioned his weight. Devin weighs 39lbs. He's

five, and very tiny. Like yours, our ped doesn't seem all that

concerned about his weight, but I am! He isn't gaining at all.

Actually, he did when we first started him on the Pediasure. He

gained five lbs in nine days. Suddenly about a week ago, he lost it

all, and is back down to 39lbs. *That* concerns me! No one, not even

my husband, takes this seriously. I am just going to have to do the

best I can until the gastro appt to at least maintain what he's

already got. " Make every bite count " is my mantra lately. *Ü*

e

[Guest guest]

Magnesium supplements help tremendously- and my boys do not eat well if they are constipated either.

Cindy-GA

Re: Messy Eaters?

Dear Ann,Thanks for the advice. I don't know what to think about Devin's eating lately. Today he ate well. By well, I mean he ate more than a spoonful of what was on his plate, ate some good snacks, and drank two cans of Pediasure. (he likes the vanilla w/fiber plain out of the can). I wonder if the increase in eating had anything to do with the fact that he pooped two days in a row. Sorry to be gross, but that is a major problem for him. He has chronic constipation, only going an average of three days per week. His regular ped put him on Lactulose, and after much trial and error, found that it made him more sick. His stomach bloated, he didn't eat, and had no energy. I just stopped it over the weekend, and he was back to his 'normal' self. So I stepped up the fiberous foods, and we'll see what happens. We will be seeing a ped gastro on Aug 8th I think for the first time. I should have done it long ago, but I thought other means would take care of his loss of appetite, and he'd start eating again. He used to be a voracious eater, and now this. I'm glad you also mentioned his weight. Devin weighs 39lbs. He's five, and very tiny. Like yours, our ped doesn't seem all that concerned about his weight, but I am! He isn't gaining at all. Actually, he did when we first started him on the Pediasure. He gained five lbs in nine days. Suddenly about a week ago, he lost it all, and is back down to 39lbs. *That* concerns me! No one, not even my husband, takes this seriously. I am just going to have to do the best I can until the gastro appt to at least maintain what he's already got. "Make every bite count" is my mantra lately. *Ü*e