Kids with oral aversions & feeding problems Support - Page 3

[Imvishta]

We just had our family Christmas dinner last night, and they insisted on feeding DS (19 mos) mashed foods, which he promptly threw-up all over himself. I was so irritated as if there is ever a time we should skip the whole food issue and give him a bottle or something it's at an event when there is so much else going on!

Also, don't know how this is related, but another post mentioned the issue with shoes... DS has been on PT for over a year (torticollis, helmet) and ou therapist has us brush the soles of his feet with a soft, yet plastic (like a veggie brush), brush to help with walking, which he is finally doing.

But, most foods that aren't heavily pureed make him gag. He'll just suck on a cookie now, but never eat one. Never eats cheerios or any similar type of puffed cereal. (Yet will put any non-food item in his mouth?) I think I'll be talking with the PT soon about some OT if needed.

And, thanks for the info on EE to the above poster. I've just been diagnosed with a sliding hiatal hernia and GERD, with possible asthma, so I'll ask about this diagnosis when I next go to the doctor, as I do have allergies.

[jogirl]

This thread brings so much back to me.
My oldest dd had severe reflux and wasn't diagnosed properly (despite the MASS reguritation after every feeding, which we didn't know for the longest time since she refused to breastfeed or take a bottle at all - except for 1 oz every few hours). We finally got her to the children's hospital and began medicating by 8weeks (?). It was too late. The damage was done. Breastfeeding was dream that we gave up - it was impossible with the situation at that time and my sanity level (I was pumping 0.2ounces). I wish it would have worked, but I'm at peace after now having breastfed my second child and seeing how beautiful it can be. The *only* way we could feed Anna was sleep-feeding. Children's Hospital recommended it and it worked somehow - although a little dangerous. We gave up on getting her to eat awake for about 10 months. We would put her sleep by walking/singing/etc and then once she was consciously out we would plug in her bottle of formula. We had to be careful since she refluxed so profusely. The burp was essential and sometimes the throw-up was so intense I had to change my underwear because it soaked through. We were so worried about her weight that we would then mop up everything she spit up and place all soiled clothes in a box to weigh on a postal scale. Then we would wash and dry them and weigh again - to get the precise amount of how many ounces she spit up. It was between 3 ounces and 6 ounces (everything). So much for that "it's not really as much as it looks like" line. Geesh. She never really had a nap to sleep since it was always used for feeding and then she'd spit up some. It became harder as she got older and slept less...that's when we addressed the problem with the Infants and Toddlers program. We learned that she'd take a bottle awake if she was fully engrossed in a tv show. We watched HOURS of Bear in the Big Blue House with her (her only favored show). We watched Bear in the car and bottle-fed her. Eventually at 13 months I decided she needed to ingest food or get over the spoon-fear. We tackled it head-on in a method that most therpists wouldn't recommend, but it worked for her and she's now an adventurous eater at almost 4 years old. I can't even imagine all we went through trying to get this little girl to eat food.

My son had breastfeeding problems, but we worked through them. They were mangable, but he still didn't want to eat. I don't know if he needs more reflux meds to see if that's why he avoids things - or if it's just sensory - either way, we're taking a different approach with him since he's entirely different from his sister. Thankfully - he'll take any form of milk (we're currently weaning), loves his poly-vi-sol (whoa!), loves crackers(some)/chips(most)/cookies(texture dependent), but won't eat veggies/meat/etc other than the standard Mcdonalds fare and mac/cheese and some plain rice dishes (which is fine with me right now). He does love canned pears, but it took feeding him the juice on the spoon straight from the family serving bowl for a few days until he would try the pears. Doesn't like anything soft/bready. Oh and when they get sick.... doesn't it kill you when they don't eat because they don't feel well - we always worry they are starting a new habit/phase... but it always passes.

So, for those of you with little ones who are happy to starve - I've been there. It sucks. It's emotional and thankfully as the kiddos become more aware they change and more opportunities become available. I'm so thankful that we've graduated from "baby anorexia", which is what the reflux specialist wanted my daughter in a study for. That was the last straw for me. Do what you need to do - for us we were just happy that things looked up once she was receptive to sleep-feeding.

[jogirl]

Oh... both my kids are so far below the weight chart that it's just silly now. I've given up worrying... I think they'll just be that way and if my third baby is skinny then I won't be the least shocked. In fact, when my son fell off the weight chart they looked at my daughters chart and went "oh well - they both seem healthy enough". Thank goodness!

[AuntLavender]

Today my son has eaten

three tiny chocolate coins (gelt), 2 Tic Tacs, a few swallows of skim milk, a pack of PEZ (12 pieces), and a couple Barbeque Pringles in addition to breastfeeding.

He refused oatmeal/toast/or cold cereal and juice this morning. He refused the ham and cheese sandwiches and a sugar cookie for lunch.

Yesterday he ate even less. A few days ago he ate 1/2 cup of boxed Kraft macaroni and cheese!

Even though he eats so little he is able to poop! In fact his bowel movements are getting larger and his OT thinks he is developing the enzumes to digest his food!?! (He's 42 mos old).

I'm going to ask his ped on our Jan visit for some blood work.

My Dh suggested weaning him but I think that is what is keeping him healthy! He's 31 pounds at 3 1/2 years old!

Sincerely,
Debra

*My son won't drink Pediasure. He tasted a few sips of Carnation Instant Breakfast once but has never tried it again.

[USAmma]

Originally Posted by jogirl

This thread brings so much back to me.

Wow, you have been through a lot. Reflux is so, so hard!

Did either of your kids get tested for allergies? I just wonder how much of a factor that is in reflux?

[Strong Mama]

WOW. My son has just eaten two finding nemo(fishies!) cheeses.! TWO! CHEESE! He has just helped me make christmas cookies and then some sandwiches for daddy and saw the cheese(my attempt to get him to eat stuff--propaganda techniques ) and asked for it. He actually held it and ate it! He usually does not hold stuff, has to be broken up into small pieces too. I think cooking for him is the way to go!

[Strong Mama]

Well, how was the eating on Christmas, guys?? Ds ate three bites of turkey, two pieces of fudge, and some bacon. Thats it for the little guy on Christmas!!!!

[Thystle]

Mine actually ate red meat yesterday and is eating more today . That happens very rarely now (unless you want to count McD's meat as real meat. )

[mamarhu]

YoungSon put a couple bites of goose in his mouth, chewed awhile, and discreetly spit them into his napkin. Said they tasted good. But tonight he had a bowl of goose soup - noodles, veggies and all!

[zaviersmomma]

Wow!

I can't believe so many people have feeding issues with their children! My son is 18 mo. w/CP and dev. dis. We just had a g-button put in due to ftt. We tried diet mods, etc but this was a last resort. Don't get me wrong, he used to eat fine, as in table foods and greedy bottle feeds. But after this surgery, the supplement feeding mode is full time feeding mode and I feel like we are in a nightmare. We've worked so hard and he's come so far, and now it feels like we're teaching him all over and I am so very sad for him. He gets such little out of life(maybe this is me superimposing), eating was a passion of his as he does not roll-crawl-use his hands-etc, and the surgeon says that his oral aversion has nothing to do with the surgery. I asked him why he ate fine before then, and he says I have to talk to my neurologist. I could just slap him. He says this so blithely, and he in fact was the one who talked me into the surgery so sweetly. I just want my little Z to have what he had before, he loved to eat so much. Please anyone who has had a g-button or fundoplication write back to me I feel so hopeless.:

[USAmma]

Originally Posted by zaviersmomma

I can't believe so many people have feeding issues with their children! My son is 18 mo. w/CP and dev. dis. We just had a g-button put in due to ftt. We tried diet mods, etc but this was a last resort. Don't get me wrong, he used to eat fine, as in table foods and greedy bottle feeds. But after this surgery, the supplement feeding mode is full time feeding mode and I feel like we are in a nightmare. We've worked so hard and he's come so far, and now it feels like we're teaching him all over and I am so very sad for him. He gets such little out of life(maybe this is me superimposing), eating was a passion of his as he does not roll-crawl-use his hands-etc, and the surgeon says that his oral aversion has nothing to do with the surgery. I asked him why he ate fine before then, and he says I have to talk to my neurologist. I could just slap him. He says this so blithely, and he in fact was the one who talked me into the surgery so sweetly. I just want my little Z to have what he had before, he loved to eat so much. Please anyone who has had a g-button or fundoplication write back to me I feel so hopeless.:

I'm so sorry you are going through this with your son. Did he have the fundo? The fundo is a complicated surgery and it reduces the size of the stomach, and also can affect hunger and motility. It's used to control severe GERD that does not respond to meds, or for kids who aspirate. So if he did have the fundo, just know that it's a long recovery but that he will probably feel better in time.

My dd did not have the fundo because she didn't meet the criteria I mentioned above. She has just been dx with E.E. and food allergies so now I am glad we didn't have it for her. I think she will be okay without it as long as we control the allergies. But I know the fundo can be good for some kids in the long term.

The g-tube itself should not cause many problems. Sometimes it will cause a temporary increase in reflux, but it's almost always temporary. And then the other half of patients don't have any ill effects from the surgery at all. That was the case with my dd. She recovered quickly.

[USAmma]

Oh-- the holidays-- my dd fed herself the holiday dinner! She didn't eat a lot and I ended up feeding her the rest over an hour (she's a slow eater). But her attitude was great. I have had to go back to tube-feeds sometimes because it's cold/flu season, and also her periactin has stopped working and she's taking a small break from it. I hope she gets back to eating more soon.

[~Megan~]

I would like to share the short version of my story.

We didn't realize dd had OA until she was over a year and not eating solids, someone suggested the idea to me and it seemed like she fit the bill. After fighting with docs about her issues (they wouldn't believe such a chubby baby had problems eating, no nursing issues just solids issues) we switched primaries and got a referral to an oral therapist at a children's hospital.

We saw him weekly for 2 months. We did exercises and tried all sorts of foods. He was really interested in her because unlike most of the kids he saw she was healthy and growing, didn't have an obvious reasons for OA (though his best guess is overactive suctioning at c-section birth) and spoke really well for her age.

After a while we saw him less often but kept in contact trying new ideas and exercises. He was really stumped with her. We did eventually do a swallow test with the dye, she was so hysterical about it too. Poor baby.

Eventually it finally clicked for her at about 22 months. It was right after a trip to a place with a sand box. At first she didn't want anything to do with the sand but dh kept encouragin her and the other kids there were having so much fun that she tried it and loved it. It seemed to break down a wall and she started eating.

We were so relieved! At one year she had weighed 27lbs (on creamy mama milk!) but by 22 months she was down to 25lbs and we had started to seriously worry. After that she started eating everything we gave her.

To this day she occasionally has problems and gags, especially while coughing or when flemmy but is so much more normal. She still doesn't like oatmeal or things like that but eats like any other 4 yr old.

We are so thankful to have found our way through this. I post this as encouragement to other parents. I hope you find the key for your child so you can get past OA too.

[PumpkinSeeds]

It must be the holiday season! My son took an itty-bitty (we're talking barely there) bite of salmon yesterday. He said it tasted good but wouldn't eat more. It took him 1hour and 45 minutes to work up the courage to taste it.

Is this progress????

Originally Posted by mamarhu

YoungSon put a couple bites of goose in his mouth, chewed awhile, and discreetly spit them into his napkin. Said they tasted good. But tonight he had a bowl of goose soup - noodles, veggies and all!

[Adamsmama]

My son is almost 4 and when he was 1 he would eat a variety of foods and then when he was almost 2 started gagging a lot and vomitting at almost every meal. It took us a few months before we realized which foods he was having trouble with (of the foods he would actually eat--some still made him gag and others he refused to eat). Now -- he will be 4 in one month -- he will eat:
Yogurt
Applesauce
Cheerios (plain only)
toast with jam
pizza (cheese pizza)
cheese sticks
crackers
sliced apples
berries
ice cream
cake
cookies
chicken nuggets
fries
sometimes chicken patties
sometimes meatballs with sauce
small ravioli
eggs
waffles
pancakes
grapes
raisins
no veggies at all--recently took a bite of a cooked carrot and then immediately spit it out and wiped his mouth

I worry that he doesn't get a balanced diet & enough protein. I give him a vitamin most days, too, to make up for the not so balanced diet.

[Liba613]

Sasha, that actually sounds like a pretty decent list to me. The only thing missing is veggis. I have one who won't eat cooked veggis but we have found some raw ones she will eat.

You have lots of protein sources, some fuits, lots of carbs, even yughurt and berries.

I think three and four year olds are just hard to feed, but maybe my perspective is a little skewed.

[sbgrace]

I don't know if it is appropriate for me to be here as our feeding issues are a bit different but I need to vent.
My son is constantly dropping off the growth charts. His first time was I think 4 months old and we really didn't get back on until after a year. At that time he had aversions to drinking (pumped milk) due to severe reflux (he spit up blood). We went in to him 3 and 4 times a night to feed him while he was mostly asleep just to get milk into him. He has always had gagging problems but does eat food (so I don't know whether I belong here). The problem is he eats so little he doesn't stay on the growth charts. He doesn't get enough calories or protein by a long shot. So I feed him homemade smoothie drinks (fat and protein and carbs). He still falls of the chart a lot and hasn't gained any height in almost a year. Most frustrating to me is that he won't drink anything either unless I am holding him and reading him a book to distract him. He will only drink out of broken nuby sippy cups (and breaking the stupid top just right so it comes out with minimal effort but not too fast is near impossible so when one of his tops gets rejected by him I get so stressed out). He drinks very little throughout the day (some days as little as 12 ounces or less). Away from home or for any other people (including my husband) he won't drink at all and barely eats. So on Christmas my son had one bite of turkey. All day. And it wasn't for lack of offering (I even tried to hold him to drink). And I feel chained here because he won't drink unless I'm holding him. And I spend at least an hour a day holding him to drink. I feel bad about his brother who just plays by himself while I hold and read to Andrew. I'm frustrated right now...Christmas was hard and we couldn't visit long because of his eating (lack of).

[USAmma]

Rachelle, that sounds sooo horribly frustrating.

[Adamsmama]

Originally Posted by Liba613

Sasha, that actually sounds like a pretty decent list to me. The only thing missing is veggis. I have one who won't eat cooked veggis but we have found some raw ones she will eat.

You have lots of protein sources, some fuits, lots of carbs, even yughurt and berries.

I think three and four year olds are just hard to feed, but maybe my perspective is a little skewed.

Thanks--reading some of the other lists here does put it in perspective for me. I know he has some very strong aversions but they aren't severe. His OT told us he seems to be doing ok with the variety he will eat. It is just frustrating because he won't try *everything* like I had to when I was little. My other son will try a little bit more but he is picky as well--but not in the same way. My husband was a very picky eater, as a child, and until he was in college never tried certain fruits or vegetables or even ketchup and mustard. He had a limited diet.

ETA: Part of my frustration is that he has several food allergies--including milk (which he would drink constantly, if I let him) and of course, cheese and other dairy. I do let him have cheese and yogurt on a limited basis because I'm afraid he doesn't get enough calcium. He is allergic to peanuts, soy, milk, beef, fish, and rice (those are his big ones) and almost any other food they tested him for he came back allergic to, but on a lower scale. I feel guilty over the fact that the foods he loves he really shouldn't be eating (he would eat cheese and crackers all day long) but other foods he can't eat without gagging.

[Liba613]

Originally Posted by Adamsmama

Thanks--reading some of the other lists here does put it in perspective for me. I know he has some very strong aversions but they aren't severe. His OT told us he seems to be doing ok with the variety he will eat. It is just frustrating because he won't try *everything* like I had to when I was little. My other son will try a little bit more but he is picky as well--but not in the same way. My husband was a very picky eater, as a child, and until he was in college never tried certain fruits or vegetables or even ketchup and mustard. He had a limited diet.

I am not saying it is easy or he doesn't have oral issues. It just made me think about second daughter, who was in SIOT as an infant and toddler, and her food issues. LOL I thought she was doing well and had even thought she was over her food sensory issues, but her list is shorter than that. She is almost six. She still doesn't eat any cooked veggis, no cake, no icecream, we still have to wash her meatballs or make them without sauce, etc. But she does eat enough now that it isn't an issue. We have lots of protein and starch options.

Feeding kids is really hard IMO. My two year old, with no sensory issues that I know of, is at a terrible stage. It isn't that she won't eat anything, but she won't eat anything unless it is off of my plate of my husband's plate. Even then she only ate the carrots out of the stir fry at supper. She is living on chocolate milk, crackers and carrots. It will get better though. I know it will!

to you!