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Kids with oral aversions & feeding problems Support - Page 6

post #101 of 139
This thread is so emotional for me. I feel such empathy for all of you for what you have been through with your children. At this point, I don't even feel that I belong on this thread. A couple of sessions of OT and some brushing are just a cakewalk compared to what so many of you have been through.

One thing to mention, just in case anyone may be affected by it. Sometimes malrotation of the intestines occurs sporadically, off and on -- the intestines twist and untwist and therefore some of the problems are not revealed during testing. Just something to consider discussing if it seems it may fit your child's case. I am not saying that it does for any of you, I'm just a one trick pony on this subject. The symptoms can be bright yellow or dark green vomiting, intermittently. This is very unusual, but does occur.
post #102 of 139
This thread is so wonderful. My 4 yr old DD would still be getting all of her calories from nursing if it were up to her...I've negotiated with her to bring it down to nursing 2 times a day. I'm all for child-led weaning, but now her latch is incredibly uncomfortable for me, and I get a bit worn down nursing both my 4 yr old & my almost-1 yr old. Anyway, older DD has sensory integration dysfunction and is a "problem feeder". In addition to gagging at the very sight and smell of many foods, she doesn't recognize her body's hunger cues. She keeps dropping growth percentiles, and weighs about 5 pounds more than her baby sister. Of all her sensory issues, the eating is probably the most difficult for me to deal with, emotionally.

Does anyone have a recipe for a home made, calorie-rich, nutrition-dense drink? I need something new to try - Once DD decides she doesn't like one of my smoothie recipes, I have to give it up for good; I'd love some new ideas!
post #103 of 139
Thread Starter 
People ask me all the time if my 5 yo and my 2yo are twins. That's how small my 5yo is.


Quote:
Originally Posted by rebx View Post
She keeps dropping growth percentiles, and weighs about 5 pounds more than her baby sister.
I don't know of any drinks, but my son used to eat pureed soup. It looks nasty to regular eating people but it tastes good and you can hide anything in it. I used to boil chicken thighs for 2 hours until really soft. Take the chicken out and let it cool, then debone it. Strain the broth to use as a stock, but set aside. In a pot, add watever vegetables you want and stir fry them a bit to soften them in some olive oil. Add the stock and bring to a boil. Add enough rice to aborb most of the water and simmer until soft with whatever spices you are going to use. I used to add just a tiny bit of oregano. Puree the chicken and add it to the soup. Freeze in single serve containers.

Of course, he used to eat this only when I was spoon feeding him. Now that he's self feeding he won't eat this anymore. But it got him through some pretty rough patches.
post #104 of 139
Pumpkinseeds - Thanks for the pureed soup idea! I've pureed all sorts of other things, but never an entire chicken...I'll give it a try. Meat is on DD's Never Eat list, but maybe if it's a completely liquified, and has some other flavors (she loves onions), she'll give it a try. Probably not, but wishful thinking is sometimes what keeps me going. And I can definitely puree some veggie soups with beans/tofu, too. Thanks!
post #105 of 139
Folks, I need some help..or just to vent.
I am just frustrated and scared. My son is small (as in reg. falls off the growth charts since he was 3 months old and is now 3 years small).
I worry about his intake (which is nothing). He was drinking smoothies which saved us because I could get in protein and also calories. He barely eats. I have to hold him to get him to drink the smoothies and he only drinks out of a certain cup broken a certain way : . Now he isn't drinking them and I'm spending a ton of time holding him to try to get him to drink. He's gagging a lot on about anything I give him (including the drink...he actually vomitted Wed. and also a week ago and has gagged on some his favs. like pears).
Without drinks, I don't know what I'm going to do for protein, let alone calories. I was looking at nuts but that blocks iron and he is anemic. I'm really just venting. I'm so tired of this. He has autism and health problems (severe reflux) and yet the biggest stress by far since he was a baby has been this. I just feel I can't take it anymore.
post #106 of 139
Quote:
Originally Posted by sbgrace View Post
Folks, I need some help..or just to vent.
I am just frustrated and scared. My son is small (as in reg. falls off the growth charts since he was 3 months old and is now 3 years small).
I worry about his intake (which is nothing). He was drinking smoothies which saved us because I could get in protein and also calories. He barely eats. I have to hold him to get him to drink the smoothies and he only drinks out of a certain cup broken a certain way : . Now he isn't drinking them and I'm spending a ton of time holding him to try to get him to drink. He's gagging a lot on about anything I give him (including the drink...he actually vomitted Wed. and also a week ago and has gagged on some his favs. like pears).
Without drinks, I don't know what I'm going to do for protein, let alone calories. I was looking at nuts but that blocks iron and he is anemic. I'm really just venting. I'm so tired of this. He has autism and health problems (severe reflux) and yet the biggest stress by far since he was a baby has been this. I just feel I can't take it anymore.
My heart goes out to you because I remember sitting in front of the tv with a bottle with a broken nipple (broken just right) so that I could squeeze a high fat yoghurt with powder supplement into Sierra's mouth for her to swallow. She would often vomit as soon as we were done or after a burp. The dispair and hopelessnes was overwhelming at times. I don't have anything to offer, but wanted to give hugs.
post #107 of 139
:
post #108 of 139
Quote:
Originally Posted by sbgrace View Post
Folks, I need some help..or just to vent.
I am just frustrated and scared. My son is small (as in reg. falls off the growth charts since he was 3 months old and is now 3 years small).
I worry about his intake (which is nothing). He was drinking smoothies which saved us because I could get in protein and also calories. He barely eats. I have to hold him to get him to drink the smoothies and he only drinks out of a certain cup broken a certain way : . Now he isn't drinking them and I'm spending a ton of time holding him to try to get him to drink. He's gagging a lot on about anything I give him (including the drink...he actually vomitted Wed. and also a week ago and has gagged on some his favs. like pears).
Without drinks, I don't know what I'm going to do for protein, let alone calories. I was looking at nuts but that blocks iron and he is anemic. I'm really just venting. I'm so tired of this. He has autism and health problems (severe reflux) and yet the biggest stress by far since he was a baby has been this. I just feel I can't take it anymore.

Just sending you some strength to get through another day, and hope that things will get better soon. I can relate to so much of your post about the feeding issues. ((HUGS))
post #109 of 139
sbgrace- I'm sorry you are going through this. Hang in there.

I'm a little late in finding this, but ds is in this category. 21 mos and he does not eat anything hard, does not self feed. He has a submucous cleft palate so I don't know if that has anything to do with it. He does have some delays due to a delayed PDA repair, but he's gaining developmental steps daily.

Until recently his diet consisted of oatmeal, cream of wheat, condensed cream soups with over cooked pastas, etc. He would often hold bites in his mouth for hours, mixing it with saliva and not swallowing. After a friend spoke with a patient of hers who's an occ. therapist, she suggested that ds has a sensitivity issue with his mouth and that he needed things with more flavor, pop, etc. Since we've been on our trip he's gained nearly 2lbs (this is a kid who'd gain no more than 1/2 a pound in 3 mos) in 2 mos and it would have been more if he hadn't been sick! Granted, he's still not eating "hard" foods, he's eating Indian, Greek, more Mexican, etc., and loving it. It was the key that helped unlock some of his issues.

He also just started to feed himself...unfortunately, it's only with chocolates! But it's a start! After nearly a year of trying to get this kid over the third percentile in weight, it might just happen soon.

I do add nutritionals to his foods and smoothies. Mostly probiotics and/or acidophilous or digestive enzymes to keep his gut regular, especially after meds. That seemed to also help when he had severe reflux after his NICU and PICU stays and after a recent virus. I will soon be trying some fish oil supplements that have been working for a friends son once I know what exactly they are.
post #110 of 139
Ds (21 months) is exclusively breastfed and has never had a bottle. Our doctor suggested trying a bottle with him to get some extra nutrition in him (multivitamin mixed with juice or something). We tried a spoon and a medicine dropper with the multivitamin, but he refuses to swallow it (he drools until it all runs down his chin). Any opinions about trying a bottle? Could that cause him to stop nursing or anything like that? Since he nurses well, I don't want to mess that up. Thanks!
post #111 of 139
bottle could cause issues, but maybe not since he is such a well established nurser. It's kind of a gamble. Could you put the MVI in something which it would be better disguised like some fruit flavored yoghurt. You could even blend some sweet fruits like banana and strawberry or apple to mush and then hide the MVI in a spoonful of that.
post #112 of 139
OK, well I couldn't make myself read all the posts, although I was interested in what everyone's experience was.

Here's our deal ---

DD nursed, but was never one of those kids who ate constantly - good eater though. She had no interest in solods until she was maybe 15 months or so and even then she wasn't over-joyed. She ate purreed stuff a little, although she would never eat any kind of fruit. She always made a sour face. You could get her to suck on crackers but she never really ate them. Her OT was worried she never ate anything she had to chew so she suggested cheese puffs - crunchy, but they still kind of disolve in your mouth. She did love cheese puffs (still addicted today ).
Near age 2 she started eating the real soft tofu, right out of the package. Well, around age 3 or 4 maybe she started eating less and not eating stuff she did before. She nursed until a bit after 3 so at least we had that to fall back on then. By age 6 her foods consisted of bread and butter, cheese puffs, soy milk, and tofutti cuties (mini-ice cream sandwhiches made with tofu instead of dairy).

At age 18 months the EC OT had a speech therapist come out and watch her eat and she said her eating looked great. At age 2 or 2 1/2 our OT (private - not EC) convinced me to let the speech therapist she worked with assess her. I felt hopeless, but I figured what the heck.
The ST said that she was not using her tounge to move the food back and forth in her mouth. Also, after I described to her about how she threw up and how the food did not seem to be coming from her stomach because there was no smell and it looked the same as went it went down....well, she said that she was storing the food in pockets in her throat or esophagus (I can't remember exactly) and when it would get full she would gag and throw up. This speech therapist had her drinking out of a cup at age 3. This was awesome because if you tried to give her comething without a sippie cup she would just pour it in her mouth with her mouth wide open and then choke.

Every Dr. beside our own ped. tried to get us to put in a g-tube and they didn't even know much about her eating - it was more because she was always slightly under weight.
We fought it like crazy because they just seemed to eager to not do anything else and just stick a g-tube in.

One day (I think she was 6) it hit me - we have to get a g-tube. I can't find her anything to eat. I brought home new stuff all the time with the hope that it'd be something she'd like. No such luck.

She had the surgery 2 or 3 weeks after the phone call to the ped.
Of course it turned out she had malrotation so they had to do that surgery at the same time.
We started formula after that and never mentioned food to her again, unless it was only to offer, and only once.
It took several months but she started eating more and more, with us taking the pressure off of her and her only having to eat for pleasure. 2, or so years later she was off of formula totally and we only used her tube for meds. It also came in handy when she was sick because I could stick lots of water in there instead of trying to get her to drink. She never would drink water - only soy milk, and now rice milk. There was more than once that she either was hospitalized or almost hospitalized due to dehydration from a normal childhood illness.

She did well (although still not eating normal foods - just a lot more than she used to with a bit more variety) until she had surgery this past fall. She was not allowed to eat or drink for 5 days and when it was time to eat and drink she wouldn't do it so we came home on formula for all her calories.
It took close to 2 months to get her off of the formula and back to eating. I tried not to panic that she would never eat again.

2 months later she had surgery again, but this time, not a planned surgery. She had an abdominal blockage caused by scar tissue from the previous surgeries. This time she wasn't able to eat for about 6 or 7 days. Luckily she started eating as soon as we got home, but she's till not back to what she was.

She spits out a lot of her "bites", but I think the variety of foods is the same as before- just way less of it.

Her current list consists of :

-rice milk
-ice cream (without chunks)
-crackers (only one kind and with butter)
-white bread and butter (or toast)
-any kind of pasta with butter
-pasta shells with orange cheese sauce
-whole wheat shells with white powdered cheese
-sour cream (she eats it in a bowl with a spoon or she dips cheetos in it)
-thick crust pizza that isn't crunchy on the bottom, with all the cheese and sauce scraped off
- milk chocolate
- pancakes once in a while, if we're lucky
- french toast once in a while, if we're lucky
- waffles once in a while, if we're lucky
- chocolate chip cookies, once in great while, if they are not at all crunchy

Nothing can be hard to chew or bite.

I'm sure compared to you guys we have a great list going It is the best it's ever been really. She rarely thows up now - she spits things out , all the time, instead (which is way better for me).

She pretends to drink pop, but she doesn't like the fizz. She also pretends to drink juice sometimes. She tips it up until it touches her lips (with her lips closed) and then she says "mmm good"
It's all a social thing. She likes to do that at restaurants, parties or with friends. She likes to order soda at the restuarant and pretend to drink it.

She's 11 and I don't really know if things will ever improve and at this point I am not so sure they will. As long as she can eat enough calories and we can supplement with protein powder and/or vitamins - well, I'm happy.

Of course she has lots of other sensory issues, but this is just the eating stuff.

Sorry this was so long.
post #113 of 139
judejude thanks for sharing your story! My dd is much younger but she's had the tube since 3 mos old. I have really obsessed on her getting her tube out becuase I know she can physically eat when she wants to. But we have to respect her needs and feelings. She was dx with a new condition recently that explains a lot of her feeding issues. Now we see the tube as probably long-term and we are trying to be okay with that. I agree it's very much a social thing.
post #114 of 139
Quote:
Originally Posted by USAmma View Post
judejude thanks for sharing your story! My dd is much younger but she's had the tube since 3 mos old. I have really obsessed on her getting her tube out becuase I know she can physically eat when she wants to. But we have to respect her needs and feelings. She was dx with a new condition recently that explains a lot of her feeding issues. Now we see the tube as probably long-term and we are trying to be okay with that. I agree it's very much a social thing.
Wow! once you have it I can't imagine getting rid of it. Even though we only use it for meds it is so awesome. It saves her so much trauma. No fighting over meds, etc. No worries if the prescribe something if she will actually take it.

I guess it depends on how medicalized your dc is because I guess I could see where I would want them to get rid of it if there were never really any issues anymore. It just saved her the last time we were in the hosital, from having to have an ng tube. Everyone else with this surgery has to have one but not her - they used her MIC KEY instead
I think it's very handy....but if she wasn't so involved medically, maybe I'd feel differently.
post #115 of 139
It's been awhile since I have been here, but when I saw this thread I just HAD to join in. This is a subject that is near and dear to my heart...and also one that has nearly pushed me over the 3 1/2 years that my child has been on this earth. It amazes me how I can be moved to tears streaming down my face when my child throws up or will not eat. It is a feeling that very few can understand! However, I am so glad to be here and see others going through the same issues that we are.

Here is a refresher on my Emma. Emma came home from the hospital as a "breast fed" baby....although she did not ever want to eat. I had to wake her up every 3 hours. She slept ALL of the time. At 3 weeks she became jaundice. Our ped watched her over the next 3 weeks, then we were sent to a children's hospital where Em was dx with Biliary Atresia (a rare liver disorder). She had a liver transplant when she was 7 mths. old (she had 7 surgeries in her 1st 7 mths. of life). Through all of this she was projectile vomiting like crazy, but I kept thinking....as soon as she gets a transplant she will be able to eat...life will be "good".

Fast-forward to looking at my 3 1/2 year old today. She would still go days without ever eating (however....she does like to drink). Because of the medication she is on...post transplant....she has SEVERE food allergies (every food that she has been tested for she is allergic to.....rice, soy, dairy, wheat, eggs, shellfish, etc.). Her allergist has tried to limit her to her least allergic foods. She still throws up.....A LOT!! I am constantly searching for answers....and wondering how much longer I can take this....but knowing that it is all for my precious little girl!

I struggle.......daily! I am scared to no end.....about the future!! I absolutley dispise family functions where there are a lot of people and they try to feed Emma....or look at me like I am the worst mom on the planet for NOT feeding her! I hate going out to resteraunts where I immediately scope out where the bathroom is and the quickest path to get there when Emma throws up.

PHEW! That felt good! Sometimes I just need a serious vent to people who "get it". That helps SO much! Thanks! Glad to know there are others out there (although I am so sorry that you are going through this). After all that Emma has been through....her feeding challenges have been the MOST difficult for me!
post #116 of 139
Quote:
Originally Posted by judejude View Post
Wow! once you have it I can't imagine getting rid of it. Even though we only use it for meds it is so awesome. It saves her so much trauma. No fighting over meds, etc. No worries if the prescribe something if she will actually take it.
I just keep remembering her smooth tummy when she was a baby and I hope one day to see her tummy that way again with just a small scar as a reminder of what we all went through. But I see her tube being in for a long time to come, and we are okay with that. It means she'll keep growing.
post #117 of 139
{{{{Em's Mom}}}} s:

You have been through so much. I can't even imagine how scary a transplant would be. Have they figured out why she continues to vomit? Is is just the food allergy or is something else going on?

I wept too when my baby vomited so much. Every time she threw up, I would just feel such fear. I don't know how I got through it day to day, I guess there just wasn't any other choice. It is good to know that other people understand some of that fear.

:
post #118 of 139
Em's mom,
I have a 3yo who vomits a lot too and has for 2+ years. I'm impressed that you go out to restaurants - you've got more guts than me. It is so hard day to day. I'm glad you posted your story here.
post #119 of 139
Em's Mom, what kind of food does your dd get through her tube? If she has severe allergies, I hope she's getting elemental food.
post #120 of 139
Quote:
Originally Posted by Em's Mom View Post
I hate going out to resteraunts where I immediately scope out where the bathroom is and the quickest path to get there when Emma throws up.
Em's mom, I'm sorry you have had such a hard time.

I totally relate to the restaurant thing, or even going to friends houses to visit. We never tried to get her to the bathroom. The only time we did that was when we forgot to bring something with us. It has really been less than a year since we have not carried a cup or a bowl with her everywhere we've gone. There is the rare occasion where she still throws up - well, it's probably still a lot compared to your average kid.
I always had a big yogurt container, sometimes with a lid. She would throw up so spontaneously I don't think we would make it to the bathroom. Oh lord, she has thrown up in glasses and bowls , from the table, at restaurants - which is so embarrassing, but I guess less embarrassing than throwing up all over everything. It's still gross and I think the older she gets the less acceptable it is, or anyway people think it's grosser. I guess at a certain age maybe it's expected that you can make it to the bathroom or control it more or something.
Friends houses aren't so bad, unless you don't know them very well. That can be stressful.

Well, no answer for you, but I can certainly relate.
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