Frustrated with Feeding Therapy

I thought I’d give you a little background on an issue my family has been dealing with for more than a year now. My 3 year-old is in feeding therapy. She DOES NOT chew her food. She has what is called tactile defensiveness. More to the point, she has a problem with texture. Hates anything crunchy or lumpy in her mouth. Will not touch certain foods. She will only eat smooth things like yogurt, pudding, applesauce, baby oatmeal, etc. For the longest time, she was eating ONLY baby food. Pureed jars of baby food.

I noticed something wasn’t right when she was about 8 months old. She had no interest in Cheerios. Wouldn’t touch them. She would gag if I put them in her mouth. She would gag if they were in MY mouth. I tried other things like cheese or pasta or even bread, but she wanted nothing to do with any of it. My pediatrician kept saying it’s no big deal. She’ll get there. Give her some time. So I did.

On her first birthday, things were no different. I wanted so bad for her to taste a piece of her yummy vanilla cupcake but she refused. Wouldn’t even lick the icing. Any time I tried she would scream and cry. Needless to say I never got the face-full-of-cake picture I was hoping for.

Still my pediatrician said, "don’t worry." She was gaining weight so there was no cause for alarm. She’s just picky people tried to tell me. I knew it was more than that. She didn’t like the way the grass felt on her bare feet. She hated finger paint and sand. She would have a tantrum if the sun was in her eyes. It was drivng me crazy that these things were upsetting her and everyone kept saying it was normal.

So, at her 2 year checkup with the doc, I said I wanted to see somebody. He suggested a feeding therapist. I went to see her and she also suggested getting her evaluated by Early Intervention, which I did.

She qualified for both and has been receiving occupational therapy and feeding therapy for a little more than a year now. The progress has been EXTREMELY slow going. The worst part for me is not having anyone to talk to. I know absolutely no one who has ever had to deal with something like this. I searched the web but the moms I found had kids who were either autistic or had downs syndrome and my daughter has neither. In fact, she is super bright. And that’s part of the problem.

I could never trick her or bribe her or force her to eat. When I did get past the fear and anxiety and get her to eat a spoonful of macaroni and cheese or pastina, she would gag and throw up. It is a vicious cycle.

I’ve gone from feeling hopeful to desperate and finally back to hopeful.

She has made some great progress. She loves french fries and will put them in her mouth and pretended to chew. She will suck on them and even break off small pieces and swallow. It might not sound like much, but if you know how we’ve been struggling for the past year, you’d be proud.

But I feel myself losing hope. Even the feeding therapist seems confused. Why is she still not chewing? She suggested I check out St. Joseph’s Hospital. They have an intensive feeding program where she would go every day for a few hours and they guarantee success. I’m tempted but finances are tight and chances are it won’t be covered by insurance. As it is now, her therapy is only covered 80 percent.

 I am so tired of dealing with this. I want it to be over. I am angry. I am frustrated. I don’t know what to do anymore.

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About Stacy

Comments

  1. I am delaing with the same situation. My Son has been getting therapy since June and it has been a very slow and painful process!!! It is soooo frustrating!!!!

  2. Dear frustrated,
    My son is 16 mos and will only eat lumpy food when I cover it in applesauce. Even then its a gamble…I get frustrated with that…I can’t imagine what you are going through. I feel like it is something I have done wrong. I feel as if I have failed. I can’t help him…. Then I read your story. You should feel better knowing that you are getting your child the help they need….That you (and the pediatrician) are not in denial….
    Good luck

  3. Hello,
    Our baby is 8 months now and still has no interest in eating solids. We have tried baby food and home made food. She will push it out with her tongue if we somehow manage to get a spoon in there. If not, she will seal her lips shut and nod her head from right to left as if saying “No, no, no!” My pediatrician also said the same – that we would need a speech therapist if the baby doesn’t start eating my 12 months. It is a little upsetting knowing that other friends with their children have no problem at all. We have tried eating along with her, eating in from of her, getting her to feed us, putting little pieces of food on her tray. She will pick up the food and play with it like a toy, try to bang it against something. She has no interest at all to put that in her mouth. I also noticed that our baby doesn’t like the feel of the grass on her bare feet as well – but that can just be a little part of me, as I do not like the feel of that either.
    Point is, I am a little concerned that we will have to get a therapist involved. There are times when I try to be optimistic and say that this will not last and once she realizes that food is so much better tasting than just her formula, it will all be over.
    To anyone else who reads this and is having the same problem – good luck. I don’t have an answer, but reading other moms vent about this situation makes me feel like we are not alone.
    Have a good day.

    • Hello, My son is JUST like this! He was born a month preemie and had a stroke and brain hemorrhage at birth. He will drink a bottle just fine as long as the nipple is stage 1 or 2. If it is larger then he will NOT drink it and chokes and pulls away. He has been in occupational and speech therapy since birth. They had me wait until he was 6 months (adjusted to preemie) to start trying cereal. He immediately gaged and threw up everywhere. I figured it was because he wasnt used to it so we kept trying. I mixed it with formula, water, this fruit and that fruit and every time, it was the same thing!! I then decided maybe its just the cereal and started trying baby food. Every fruit, every veggie, different spoons, the squeezable baby food…..EVERYTHING!!! Every once and a while I could get him to eat a couple bites but after that he would lock his mouth shut and turn his head and start crying. Our speech therapist said its a texture problem and he needs to “play” with cereal and get it all over himself 2x’s a day to get used to the texture. He is now almost 9 months old and we havent seen any change in him. I really dont know what to do from here!!

  4. I am a feeding therapist who works with children like yours everyday. Feeding issues are extremely hard to deal with for parents. As parents we have an instinctual drive to feed our children. When we can’t it is more than just frustrating it’s heartbreaking!

    Any parent who is reading this and has a concern about a child’s eating should seek advice from a feeding specialist. While our pediatricians are well meaning, feeding is not their area of expertise. I have seen many children in my practice who should have been in therapy long before the problem had a chance to snowball. Follow your gut!

    Thanks for the post!

  5. Hello. My daughter is 16months old and she is also in feeding therapy and also meets with a nutritionist through Early Intervention. It has been nothing but frustrating for me. I am upset all the time about this and I feel I’ve been neglecting myself because I worry so much about her. She also won’t chew, she sucks on the food. She also spits out lots of food. She’s still on the bottle and I’m not gonna take it away bec. it’s like our insurance for her. She also has food allergies which makes things even more complicated.

    I’m frustrated with our ST bec. she doesn’t seem to listen to my concern.

  6. Mama Daves says:

    Stacy, My daughter was born without an esophagus. It has been sugically corrected, but still ongoing. Anyway, many feeding issues/aversions and delays were avoided (even though she could not eat) because of a speech therapist that thought “out of the box”. My daughter is 2 now and we are still working on chewing (lateral chewing now.) I have been on your road and it is still exhausting. Hang in there, but pick 1 meal a day that you work at it. I would love to share some of the tips that have saved us. Please email me @ kellydaves@bellsouth.net. Example: Go to a fabric shop and buy cheescloth. It is soft, no food can get through it only the taste. That your daughter may like. Wrap a french fry, pickle, etc. inside cloth. Twist at end and you hold there. Place in back of mouth from the side (molar position). See if she will eventually yield to putting pressure and chewing knowing that no texture is going to come out. Hopefully she will explore new taste and he desire for these tastes will drive her. The key….she only gets these through cloth until she improves. Cheesepuffs wrapped one out with my daughter. Yes, I agree diet is #1, but at some point I had to give her an incentive to reach the true goal. Nuk brushes of course are great, but my daughter hated them..Not to say she didn’t fuss in the beginning of anything new. Abba also had the gag reflex. It was just foreign to her. We had to teach her how to do it so she wouldn’t be scared. Don’t feel alone, even though you’re the one pulling her through. You may be lonely (We all are when these things happen), but keep reaching out. YOu’ll get your answers.

  7. Hi! My twin daughters had severe feeding issues which began at 6 months old. They ended up getting GT tubes placed because they were not eating. They were severely underweight and were failure to thrive. At a year old they were only 10 pounds. I found Clinic4 kidz and Dr. Patel. Within 3 months my children had their feeding tubes removed, they were eating purees, chewing meltable solids and gaining weight. Within one year with the help of their feeding therapist, Dr. Patel, they were eating age appropriately and age typical foods. I just felt compelled to share my story with you and introduce you to Dr. Patel, and her Clinic4kids. It is a home based intensive feeding therapy that works!!! My children are eating and growing and it is all behind us now. Contact me if you need any more information. I will pray for you and please please contract Dr. Patel at Clinic4kidz. God bless you and your little one.

  8. Hello. My son who is almost 2 1/2 years old is going through the same thing. He doesn’t know how to chew his food and barely opens his mouth to eat. Eary Intervention said that he has a sensory integration dysfunction – specific to his mouth. He’s been seeing a speech therapist and an occupational therapist since January and the improvement has been very minimal. Atleast now he actually lets us brush his teeth and on good day he actually tries to do iton his own. Other than that, feeding him is a very long process.

  9. oh my gosh, I feel like I am writing this post myself, My son is 19 months old, he has feeding problem since he was 10 months old. He started not to like his formula since he was 6 months old, so I started to mix his formula with his pureed baby food, so at least he can have some formula throught out the day. When he get older, I tried giving him textured food such as macaroni and cheese, but he would gag and eventually throw up, so I stopped. I continue giving him stage 2 sometime stage 3 baby food, so at least he has something to eat. Time went by, he was 12 months old, but still no improvement, I took him to speech therapist and she told me to thicken her baby food which I did, but it made him gag, so I stopped. I am very frustrated that he is 19 month old, but still unable to swallow his food. his mouth is almost full of teeths already, he can chew a little bit, but he totally cannot swallow. I am still waiting for my insurance to be approved, before I can see speech therapist which takes forever. he has not gained weight since he was a year old, because he cannot eat variety of food, only baby food. I hate cleaning up his throw up everytime i tried giving me textured food, if not that, he would spit it up after sucking all the juices out of the solid food. Gosh, I didnt know this can happen to me, when I was a kid, I didnt have this problem, I am a good eater, that’s what my mother told me. I am actually embarrased now if my friends or coworker knows that my child cannot swallow solid food. the pediatrician keep telling to try again and that he will get this over with and will start chewing and swallow since months ago. But there is no improvement, I am tired, frustrated and felt like noone can help me. I am afraid he is malnutritious, he is 27 lbs for his 36 inches height. sorry for the long story, but desperately need help.

  10. Hello all, we are in this together. My son Gavin who is 18 mos now has been in feeding therapy for 4 weeks or so. Yesterday, we had a total meltdown in our session, the therapist was picking at us and continued to do so until I was in tears. I am usually a composed person but I was so angry with her, the doctor who said, “he’ll grow out of it”, and the friends who don’t understand. Prior to the blow out she threatened to discharge us because my husband did not read an article she gave us the first week. My son is doing better-he will eat chunkier stage 3, will put cheerios and puffs in his mouth until they are mush but that is about as far as it goes. He suppresses gagging and doesn’t throw up anymore but I don’t attribute this to therapy–she never gave us tips or tricks like the one mentioned in the posts about cheese cloth. Why are we paying to be beat up and defeated? Not that it should matter but my therapist does not have kids…she has a dog. She often compares the two which blows me away. Needless to say we are going to look for another therapy program and keep going—she is not a good fit and does not understand or respect cultural differences in families. Therapy should not be one-size, fits all. My son still drinks a bottle but also drinks from the straw-sippys. Does anyone know of an intensive, supportive, therapy program in Southeast Arizona? If yes, please share? thanks for listening.

  11. hi i guess i’m not alone. My son was eating stage one and two with no problem at 6-8 months old and when it came to giving him stage 3 that was thicker and chunkier he would start gagging and throwing up. Same thing when i told the doctor he kept saying give it time he’ll get there. now at age two he wants to eat everything that the family is eating but pockets the food in his right check and wont swallow it. After he stuffs his face he tells me to take it out. It is so frustrating to me because he wants to eat but cant seem to swallow it. we have been seeing a ST but dont see any progress yet. Does anyone have this issue that their kid pockets all the food and doesnt swallow it? he does ok with baby and pureed food but at 2 yrs old he needs to be eating solids. He is ok with cheerios that dissolve but cant seem to eat bread. im thinking about going to see a feeding and swallowing clinic. Has anyone been to one? thanks any help would be appreciated.

  12. To the lady in Arizona, check out the TalkTools website, this women, Sarah Rosenfield specializes in this area and she is amazing! Hang in there, Jennifer, CCC-SLP

  13. samantha says:

    hi my son is 4 years old and he still wont eat when he was 6 months old we tried to feed him baby food and he used to gag and throw it up, we keep trying to make him eat but he refuses to he will hold a hotdog or a french fry or a cookie and all he’ll do is lick it or suck on it but will not bite it or chew it, doctors saids dont worry he’ll grow out of it but i do worry i dont know what to do…..doctors saids theres nothing wrong with him hes gaining weight getting taller he even knows his colors and count 1- 10. when will my son start eating????

  14. HI My son is exactly like Sandra described in May 2008, but he is 12 months now, has had no improvement. Has never eaten and will not eat any solids, only drinks a bottle. He will seal his lips if he sees a spoon coming his way. We are on a wait list for a pediatric dietician and occupational therapist to help with feeding but the waits are so long i’m not sure how long it will take. We have already been waiting 3 months. Luckily he is not underweight yet. I’m wondering what happened to Sandra’s son; did he improve on his own? Were there any tricks or tools you found worked? I’m not sure where to start as my son doesn’t seem to like any food at all, whether pureed, homemade or small bits he can feed himself. I want to be able to help him as quickly as possible and am frustrated with the long waits. If anyone has any ideas to let me know that would be great. He gags as soon as anything goes in his mouth so we need to start with baby steps! Thanks!

  15. samantha says:

    hi dionne, i know what your going through my son is 4 and refuses to eat anything. he only drinks his milk from a bottle but he does like to drink juice from the cups, but food for get about it he wont open his mouth and he runs and hides.thank god he is not under weight but he does have to take iron medicine that the doctor prescribed because the iron in them will get low so make sure your child takes the iron medicine which taste and smells nasty so what i do is put in in the milk after he goes to sleep.

  16. Hi,
    my son is 6 years old and has downs syndrome. I can definately relate to all about him not eating. He will eat only a hand full of things..french fries, pizza, yogurt, any kind of cracker usually, pudding, cake and icecream, cookies..i know that might seem like a lot compared to some of the other post but i still can relate to the frustration of it all. I hate going out to eat because i know he wont eat and i have to take something for him to munch on. I dont ever know if he is truly full or not, he has minimal speech, and it breaks my heart when i hear his tummy growl but he doesn tsay anything! He is starting all day school this fall and i am terrified about him not eating throughout the day!! I wish he would just try something new and..ta da..start eating! i give him liquid vitamins daily and put baby food meat and vegetables in smoothies so he at least will get some nutritional value.

  17. Hi girls,

    I am a mom of a 5 year old boy with mild autism. He had very similar feeding issues and didn’t anything which wasn’t blended till 26 mo. We did feeding therapy and of course we wanted a quick miracle, but it wasn’t quick nor easy, but he moved along. He started eating solids. I remember thinking that I will not live long enough to see my kid put a piece of meat in his mouth, but he does now, he eats about anything. He has autism, like I’ve mentioned so we have other issues on top of everything else, but with lots of love, work and patience your kidos will most likely make it there. Took a while to teach him to eat mixed textures once he learned to eat different ones separately, but he eats stews, soups, you name it. This is just to give you a little hope that there is light at the end of tunnel.

  18. Hi there,
    I’m a mom of an almost 5 year old girl who is smart, thoughtful and seemingly healthy. She’s always been smaller, 5th percentile, but her father was small also. DR says she’s perfectly fine. She eats about 10 things total. THe only “real” food that she will eat is pb on toast, cut into pieces, applesauce, pureed baby peas, some crackers, dry cereal only and one or two french fries. She chokes down raisins if she’s made to. She is terribly afraid of foods, will not touch them, let alone try them. And if we force her, she has to sit on our laps and is terribly nervous. What to do? I’m so frustrated and I feel like the pediatrician thinks I’m just overly sensitive. But she’s almost 5 and cannot eat at bday parties, restaurants, etc.

  19. Hi! My daughter is 6 1/2 and has just been diagnosed with a feeding issue. I have felt like I was banging my head against a brick wall as no doctor would listen to me when I took her in and said she wouldn’t eat. I would give a list of the foods she would eat and they would say she is stubborn, ect. I finally feel like there is hope as the therapist we met with today told me she sees kids like this alot and we can work with her to get her to eat. I am not expecting an overnight miracle, but just the fact that there is something we can do is so relieving to me. My husband and I have been struggling with this issue alone with her since she was 7-8 months old and wouldn’t eat baby food. I am so glad I am not alone.

  20. I am a feeding therapist. I came across this site in a search for incidence information in order to battle the insurance companies for reimbursement of therapy for families in our state. It is disheartening to me that so many families can not find the help they need. Feeding programs need to be set up specifically for your child to teach the basic skills of eating. Hopefully your therapist is implementing an oral motor program to teach these skills. Then adding to that a food chaining type of program to progress your child through age appropriate textures so that they will be able to consume typical table foods. If I can answer any questions for you please don’t hesitate to email me.
    Jennifer

  21. I realize this post is several years old now. I’m going through the same thing with my son (2 1/2 yrs old). He gets feeding therapy 2x a week and still only eats 100% prurees. I’m wondering if your child ever got better?? Or did you do the intensive feeding therapy?? I’m at a complete loss for what to do. My son is completely normal, developing. active 2 yr old. You would never know anything was wrong unless I told you, or you saw him eat. The intensive feeding programs seem to be for kids that have tube feeds and mine doesn’t. I’m wondering if that type of therapy would help him.

  22. hi stephanie, my son is now 4 hes growing, active and normal; dont worry when hes ready to eat he will i still have a hard time with my son to eat but at least now finally hes eating ritz crackers choc dounuts and ice cream he takes very small bites but its more then what he use to do. he would only drink milk so now for him to eat what he is makes me very happy.this is what i did put some crackers or french fries, bannana ect.ect . in a bowl or plate and put it by him where ever sitting or standing at tell him yummy its good and eventually he will start taking little bites, trust me i know what your going through, your worried your frustrated u feel bad for your baby and u just dont know what to do. also give him pedisure if he wont drink it wait until he falls asleep and put it in a bottle and then give it to him.

  23. I am looking for an update…. I’m hopeful your child is better now…. but I can’t read any of the comments… it’s BLANK there. Maybe the website is broken?? I have been trying to read the comments for 2 weeks now looking for an update…

  24. Sharon Yirilli says:

    Hi Stephanie,

    I’m a dietitian who works with children with feeding problems. Although I do not provide feeding therapy I do nutrition counseling and have a problem finding feeding therapists for my clients so I have decided to add a section to my website where feeding therapists can list services. My website is feeding-underweight-children.com and the list of qualified feeding therapists will be coming soon.

    Sharon Yirilli, MS, RD

  25. My son is going through the same issue. He is 2.5 and I finally had enough of the “don’t worry” reply, so I am going to take him to a Feeding Therapist. Reading all the comments above, I went from hopeful to concerned, even before meeting with the therapist. My son just does not want to eat…anything! He will walk around with a Dorito in his hands for 30 minutes, and he only nibbles. I am hoping for a positive outcome.

  26. Hi im ashley and I am a mother of a 3 year old boy. I am having a similar problem although oil don’t think its a texture problem, I think its something different he only eats spaghetti only angel hair noddles, french fries, m&ms and pringles, which is more than normal but he’s starting to not like these foods anymore.. he will go days and days without eating and it has been worrying me for 2 years now. The doc said its normal and gave me some vitamins which he wont take then she told me to see a food theripst but I m pretty sure they are going to just say im crazy. I don’t know what to do and your the first person who I found who has a somewhat of a similar problem. Any advise is aprishiated