The Feeding Solutions Part 2: Treatment Overview

This is in response to Jina's posting.  I do not usually post on blogs but came across this posting and could not believe the similarities between the story of your son's feeding aversion and my daughter's.  She is now four but her life began much like you are describing.  From 1 month of age until 6 months she received every type of diagnostic test to determine what was wrong to no avail.  We finally had to tube feed her with an NG tube (through the nose) and when she became too capable of ripping it out she was scheduled to have a surgical G tube placed.  She never fell off the growth charts but dehydration was always a concern and the feeding process was taking an enormous toll on our mother/child relationship.  I feared that she was beginning to hate me as much as the bottle and I spent every moment was awake trying to get her into an optimal feeding state.  She would barely consume anything during the day but would feed fine at night and like you mentioned, during the day if I could trick the bottle into her mouth when she was falling asleep.  Through what can only be considered a miracle I met with a friend right before we went through with the procedure for the tube and after listening to my daughter’s story (and that of my older child but that is another story entirely) she put me in touch with Dr. Lucy Miller at the STAR Center in Denver and asked that I try to meet with her before we did the surgery.  After reviewing the medical and behavioral history with me she felt very sure that my daughter’s feeding issues and other issues with touch, movement, sleep/wake transitions, etc. were due to Sensory Processing Disorder.  We began occupational therapy treatment 3 times a week for 20 sessions (they believe strongly in intensive bursts of treatment, not once a week) and within 2 weeks there was a noticeable improvement in her feeding and in her ability to organize herself.  This is the ONLY reason my daughter was able to stay off a feeding tube and is the healthy (albeit slight for her age) child who could not be picked out in a crowd of preschoolers as being the one with any eating or sensory issues.  This is not to say that after the 20 week session she was “cured”.  We have over the course of her four year old life, been through other OT treatment programs when the developmental needs arises but she has made great strides in all areas.  I should note that my daughter has no other diagnosis.  She is not developmentally delayed in any way, is bright, never missed any milestones and shows no markers for autism or any other condition of which children sometimes show sensory issues as well.  She has no physical abnormalities that prevent her from swallowing correctly or chewing her food.  She has been evaluated at the Children’s Hospital Oral Feeding in Clinic in Denver (I can’t say enough about them as well) and the professional consensus is that she possesses nothing other than the sensory component to feeding disorders.  Researchers estimate that there are about 3% of kids like her.

So please know that you are not alone in the world and although not common, your story is shared.  I don’t intend this to be a diagnosis for your son in any way, but the striking similarities makes me think that perhaps you should research your area for an OT program or feeding clinic where their specialty is sensory based feeding disorders and their approach is to treat it as part of a comprehensive plan to address sensory integration and not just a focus on the eating itself.  I’ve never been on this blog before but perhaps the author is familiar with Dr. Miller and her work at STAR (it stands for sensory therapies and research).  She is one of the best known researchers in the field.  We are so fortunate that we live so close – I shudder to think what our life would be like if we did not find out early on how to help our daughter.  Good luck to you Jina – I hope it helps for you to know that you are not alone.  I will keep this page bookmarked to see if you have any questions that you’d like to ask me.

Please excuse the length of this narrative, but we would really appreciate any interested reader going through this first-person account of our son’s adverse feeding behavior. He is currently 1 year and 1 month old.

The first signs of his adverse feeding behavior may have commenced when he went without any food from the time he was born to 3½ days. During this time I thought that I was giving breast milk but in reality there was virtually none. After this initial period of time, he would eat only between 2 and 3 ounces of pumped breast milk mixed with Similac for each feeding session. (Please note that all breast feeding ended at the end of May.)

This went on for about 2 months. Beginning the 3rd month, when I tried to feed him in my arms as I usually had done before, he began showing signs of great resistance such back arching, screaming, crying, and generally total unhappiness. This feeding situation went on for a few weeks and the way he was getting ANY nutrition of any kind was hodong him in my arms and forcing the bottle in between his sobbing. I was never advised by anyone how to feed him much less how not to feed him. Once in a while I would wait to see if he showed signs of hunger by not feeding him for a period of time. The longest was 7 hours. He clearly was not going to show when he is hungry. I tried to change his methid of being fed by using such implements as a syringe with a long thin tube and spoon with no success. I also changed formulae and suckling nipples with no success as well. It got to the point that he began to show signs of great hatred while he was feeding such no eye contact and would do all he could to distance his body from mine. This is wen I thought about feeding him in a small bouncing chair, thinking the motion might break this impasse. Although he cried each time he was fed in this fashion, he would eventiually quiet down after a few minutes so he can relax with the bouncing motion to the point of sleep and only then would he accept the feeding. The average feeding volume was about 4 ounces.

I went to his pediatrician for advice and he began ruling out what his condition may not be, such as reflux, and also felt there was no evidence of oral deformity. He felt this may be something behavioral instead. He offered no diagnosis but referred our son to a local children’s hospital, Rady, pediatric gastroenterologist. She tried giving him some relux medication anyway that had no effect. He wound up twice in the ER last July for dehydration. After this, at my insistence, I asked that he be admitted for 3 days at Rady for observation. He was given an upper GI, endoscopy, swallow test, and allergy test; all came back negative. The only advice we received was that if his feeding quantity does not improve he’ll need to start first start with steroid therapy and later be put on a feeding tube. The staff was good at telling us what NOT to do (e.g. force feed him) but unfortunately never said what SHOULD be done for us to avoid steroids or a feeding tube. From the hospital he was assigned to see an OT team at Rady for 2 months on a weekly basis. Unfortunately his sessions did not improve his feeding from the way it was going already (he was not increasing the amount of his food intake). Their advice was to begin introducing solids and for him to master a sippy cup so he would not need to be bottle fed any longer.

He refused using his bouncing chair. It got to the point that we were forced to drive him around in our car in order for him to get tired enough to feed. We discovered (and this is an extremely important point) that it was the motion of the car that tires him, so we bought a cradle-type swing that has worked in getting him totally asleep since this is the only fashion he will take any formula. The real danger we now face is that he will soon outgrow the swing and the reality of his starving is imminent. He is currently 50 percentile in his weight, height, and cranial measurements, but again we have to face everyone telling us how healthy and normal he appears. But not one person understands the incredible sacrifice it has taken me as his mother to pay such a tremendous emotional and physical cost to keep him from drugs and a feeding tube. From what I have read in the forums, there may be very few if any mothers with the same problem.

Everyone has been hoping that he will take in more solids before the outgrowth of the cradle-swing happens. But as of today, he is still way behind on eating solids and refuses any liquids given in any manner (cups, sippy cups, straws, spoons, skewers, etc.) especially if it is administered via these artificial means. What he will eat in solids is when he initially picks at this food and will take about 5 bites and that is the end of it. This happens despite my constantly changing nutritional recipes on a daily basis as advised by the Rady dietician.

I am pleading with anyone who is reading this to please let me know if you are familiar with his condition or if you know of anyone else that has gone through this similar situation, to let me know what to do. This would be extremely appreciated

To Chanel - I would request another IFSP meeting. If they made a mistake regarding the frequency of services at the last one  then it needs to be corrected so that your son can get what he needs. Also, if the speech therapist doesn't feel comfortable working on feeding, you may want to request a different therapist and/or an Occupational Therapist consultation to help supplement the work she is doing.

For you at home, give your son a spoon to hold and play with during feeding and throughout the day. Also limit the amount of food you are visually presenting, you don't want to overwhelm him - put food in small containers and cups. Give your son food to play with when he is sitting in his high chair or is up at the table. It sounds like there may be some aversions to textures. Put food on his hands, cheeks, lips, etc so that he can smell the food and get used to it.

Keep us posted and let us know how things develop. Thank you for writing in....

My 25 month old has problems trying foods. He has an aversion towards the spoon. His speech therapist say's it's behavior problem , and not a problem with textures. I'm trying to find things to do because they just decreased his speech therapy without improvement. What was said at the isep meeting was that he get speech therapy 2 times in home and ounce at a center. But they wrote something else down. So my speech therapist stoped working on feeding and said she wanted to get him to follow direction. Saying she believed that may help , please young babies/children want to please. Now he's only down to one feeding day. What am I supposed to do with that , that's like nothing. He's gotten worse from how he was last summer , before therapy. Therapy started last week of January. He was bad the and sometimes I couldn't feed him but at least then I would be able to feed him a whole container of food. Like maybe a whole container of 2nd or 3 third foods. Now it's like the food isn't going anywhere, even if I may put a quarter of it in a 2nd foods container. It seems like his sliva is mixing with the food and making it look like it's more than it would be. He never opeaned his mouth to eat. He may have ounce in a while on occasion for my mother . She was able to feed rice and beans . But most of the time we may have to pry his mouth opean with a rubber spoon. I don't know what to do. My service coornitator mentioned getting him evualated for feeding, but if that's the case to maybe get him more services who knows when trhat would be. When will he get better ,nothing is being done. Any input will be greatly appreciated

hi my son is 14 months, i recently discovered he has this sensory issue because he wasnt and still isnt eating anything. i got an evaluation from a speech therapist and am waiting for services. in the meantime, i would like some tips on what i can do with him to get him to eat because hes just on the bottle from morning to night. please help, its very frustrating

Thank you for writing in - I have many questions for you in order to really make helpful suggestions. My first question is what is your ST recommending? It sounds as though your daughter would benefit from a combination of both sensory-based and behavior-based feeding therapy. Has the ST started to do some oral motor work with your daughter? Oral motor work will help address the chewing, sensory work will address the food aversions and doing some behavior modifications will help with getting her to sit down and enjoy eating.

Write back and let us know what the ST is suggesting....you may want to share this blog with your ST and myself and our readers can help answer questions....

Keep us posted!! I look forward to hearing from you...

Thank you for this blog.  I have a 16 month old that is just starting feeding therapy.   She hardly chews her food, won't try/eat certain foods, has multiple food allergies, gags/chokes.  She won't sit in the chair.  I've been doing lots of research about feeding and I tried to implement some things at home.  We picked lunch to be the time to do it.   She had severe reflux as an infant and she's still on Prevacid so we think this has been all caused by reflux bec. she had bottle aversion too (now she drinks willingly out of a bottle).   We are keeping her on the bottle bec. she drinks hypoallergenic formula and it's the only way she will drink it.   She does use a straw sippy cup for water.  Do u have any other tips, ideas on how to get her to chew?   We are having some issues with our ST, we don't agree with some of the things she is telling us to do.

Thanks

I am currently seeing a 9 month old that had previously been on NG tube feedings due to two episodes of severe choking.  A feeding study was completed 10-31-08 with no aspiration and child was placed back on oral feeding with bottle and cereal was initiated.  However, pt continues to reflux and vomit.  Formula has been changed many times and pt is currently on soy.  Pt will tolerate formula for approximately 2 weeks then problems will reoccur.  Pt is now refusing most baby foods.  Will take only oatmeal cereal, was consuming a variety of fruit and vegs. before.  Any suggestions?

Hi Stephanie,%0d%0aI have a specific question about feeding issues with infants.  I have a friend that has a 3-month old premature triplet who has a g-tube.  She is drinking from a bottle but often gags when drinking milk.  She also has a history of reflux but it is being treated with meds.  Is there a way to desensitize the gag reflex in a child this young?  Any suggestions would be appreciated.  Thanks!%0d%0a