Advice wanted: Sensory processing disorder and feeding aversion

July 29th, 2015

NOTE:  The following post was written by Nikki Cochrane, a foster mother living in India.  We are publishing her questions here to help connect her with others who may be able to advise her.

 

Problem:

My youngest, Brianna, is 22 months old and is blind and weighs only 13 lbs. We are sure she has sensory processing disorder. She won’t take anything by mouth at all other than a bottle, and isn’t gaining weight on formula. The problem is, doctors don’t have any understanding of sensory processing disorder here in India.

Yes, we have taken her to several doctors and ruled everything medical out. It seems that everyone agrees it is sensory processing disorder.  However, we have no one here in India who knows how to direct us on making a feeding therapy program. We are doing our best to research what to do.

She has general oral aversions. She screams when we brush her teeth or try giving a massage with an electric toothbrush.  She is also hyper-sensitive to other tactile input; she is overcoming touching different things… she used to scream when we would read tactile books, etc. She is still not great with it but is making improvement. She’s really sensitive to sound and cries when there is any loud noise. She likes to be held but isn’t much of a cuddler.

She doesn’t drink as much as we would like so we are trying to increase the amount she takes in to help her gain weight. We have decided against a feeding tube for now, unless her weight begins to drop.  Just 2 months ago we started mixing things in her formula, and some things she will spit out and refuse to eat and some things in small quantities mixed with the formula she will take. We tried mixing the regular Indian food (rice, dal, curries, fruits) into a bottle and she won’t drink that. If we pour a little bit of that in with formula she will drink it. If we sit with her for 20 minutes we may be able to get 2-3 small spoonfuls of baby food in her, but it is a fight and she screams and cries and spits it out more often than she swallows it. She is 7kg with a BMI of 12.3 and we can’t get her past the 7kg mark on formula alone with the small amount that she drinks. She IS slowly increasing the amount that she can drink which is good.
Her sensory processing disorder affects her gross motor skills as well. She holds her arms and legs close to her body. We actually thought she might have a mild form of cerebral palsy, but that has been ruled out with an MRI. She does have delayed gross motor skills but is improving. It seems that what we thought was high tone is actually her just hugging her arms and legs close to her body as a result of stress in new situations, when things are loud, etc. When she is in bed at night and is relaxed, she is loose.

 

Her History:

Brianna lived in a government orphanage until 17 months old and then came to us. She turns 2 years old next month and has been with us since January. She is blind so it is very likely sensory-related neglect. At the government orphanage she basically laid on the floor or in her crib all day every day. We don’t think there was any trauma but there was certain neglect. She has always taken a bottle of milk fine.

 

Anyone with more questions for Nikki, or experienced advice to pass along to her, please do so in the comments to this blog post so that other parents can also benefit.

Thank you so much to anyone who can help her!

 

 

 

 

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12 Responses to “Advice wanted: Sensory processing disorder and feeding aversion”

  1. Nikki says:

    Thank you so much for sharing!

  2. Erin says:

    Will she let you wear her? A stretchy baby carrier would be a nice way to get her calming/regulating deep pressure input while having the added benefit of having your body right there to assist her with building self-regulation skills. She would also get both proprioceptive and vestibular input as you go about your day with her on your chest. I would hold off on introducing new foods for now, and focus on some high calorie drink that she will tolerate in her bottle. As she becomes less defensive, there will be plenty of time to address the feeding issues. It sounds like she is in an almost constant state of fight or flight right now, and that is the first priority. I would also try baby massage. Some children with sensory processing disorder also do really well in water as it offers a steady input on their whole body, but I suspect that would be too much for your little one right now. It’s hard to offer advice without a back and forth conversation, so if you’d like to email you directly, you can ask Susanna for the email linked to my comment. I am a pediatric OT who specializes in sensory integration.

  3. Bobby says:

    My oldest son has sensory processing disorder and major food aversions. He is almost 12 now, and has always been a bit of a toothpick because of how little he will eat. That said, our saving grace has always been Carnation Instant Breakfast (I think it’s called Breakfast Essentials now). When we offered it to him in his milk bottles as a toddler, he would not drink it. We took him to a feeding clinic and the therapists there suggested we wean him onto it super slowly, by starting with maybe half a teaspoon of the instant breakfast powder in 8 oz of milk, then a week later increasing to a whole teaspoon, and so on and so forth half a teaspoon each week until he was taking a full packet in 8 oz of milk. He has had 4 of these servings per day since he was about 2 1/2 years old (sometimes changing the milk fat content as necessary). It’s not ideal, but it always worked well for him. He is able to maintain proper nutrition and his weight on that and what little else he will eat (goldfish crackers, ritz crackers, chicken nuggets and french fries sometimes, etc.). The main takeaway from what we have learned from feeding therapists over the years is to ever so slowly wean the kiddo onto a supplement or whatever it is you are trying to mix in with her milk so she doesn’t notice it becoming her new “normal.” It is a very slow process that takes a few months, but it is worthwhile in the end.

  4. Kathleen says:

    Our situation is very similar. I don’t have any “magical” solutions, but I will share our experience and maybe something will help you. My son is almost four years old, blind, and came home from an orphanage in China in January. He was pretty much left to lay in his crib in the orphanage, and he had never had any food other than formula from a bottle. He would not tolerate anyone touching his mouth, wouldn’t put anything into his mouth, and screamed during teeth-brushing.

    I have spent many, many hours over the past six months working on getting our son to eat. I started with dipping my finger into baby foods and then touching my finger to his lips. Over and over, until he could tolerate it without too much fussing. Then we moved on to using a spoon, first with a tiny amount of food on it and slowly increased the amount. I used “cues” to help him know when the spoon was coming to his mouth – like a certain sound, or touching his head, or a song. We also played with food, and he slowly discovered that squishy stuff is fun! As he was able to tolerate pureed food, I started introducing foods with some texture – chunky baby foods, scrambled eggs, etc. And I introduced finger foods that don’t require much chewing. Now, after six months, we have reached the point where my son eats three meals a day from a spoon (still mostly purees with some soft chunks in them) and is starting to learn to lift the spoon to his own mouth. He also has one snack a day of finger foods that he FEEDS HIMSELF. He can chew but only foods that break up easily. These accomplishments have taken HOURS and HOURS of time. And he fussed and cried through a lot of it. He threw up all the time, and still does probably 1-2 times a week. Even now, he dislikes eating and will often fuss as I sit him in his chair. I don’t believe he understands what “hungry” and “full” feel like, so usually I have to guess. He often turns his head away from me while I am feeding him, so I touch the top or back of his head to cue him to eat. Sometimes he responds when I say “open mouth.”

    In terms of other oral sensitivities, at first he screamed through teeth-brushing too. But we just kept doing it, every morning and evening, at least for a few seconds. Slowly his distress decreased. And as he started to be more cooperative, I stopped having to hold him tightly and he became much happier about it. Now I sometimes have to put my hand on the back of his head to keep him from moving it around, but he is pretty cooperative. He also picks up all kinds of toys and puts them to his mouth – something he would not do AT ALL at his adoption.

    My son’s gross motor skills are delayed because of his extended time in a crib. When he came home, he only wanted to lay in a fetal position, on his right side, and be left alone. He was not strong enough to sit up. Now he sits, crawls, stands, walks, and goes up and down stairs. When he is upset or scared (especially at loud noises or lots of people around), he retreats into that curled-up position and covers his ear.

    The only thing I really have done to help him learn to eat and move around is to be persistent. To keep trying, over and over, until he starts to think it’s okay. To show him (by moving him physically) over and over what I want him to do. And (this is hard) to not always stop when he starts to fuss. If he gets genuinely upset and is really crying, I give him a break, but if he is just making his little whiny, fussy noises, we push through it. I know it sounds harsh, but he is an incredibly unmotivated child who would be content to sit and do nothing all day long. This is understandable, given his history, but I want so much more for him!

    If you are interested, go check out our blog at racing2kellin.blogspot.com. I blog pretty regularly about our journey. Or free free to email me – I would love to hear more about your family’s journey! Good luck with everything!

  5. Debbie says:

    Have you tried mixing her formula with less water thereby increasing her caloric intake?

  6. KT says:

    Given your limited resources and your daughter’s need for nutrition, I like the breakfast drink idea and would also mention Pediasure, too, just to get some calories in her in a way she’ll accept.

    Neglect. I’ve recently learned it’s just about the ugliest thing there is for a child. Even uglier than physical abuse, apparently, when it comes to brain development in children. The following links are to a Harvard study done in 2012 on the effects of neglect on the developing brain. There are other papers to the study that you can easily find from this site and a video over-view. Thing is, these articles never go into treatments in detail, something we moms really need. I’m sure that professionals would argue that treatment is individual, and I do agree, but I also know that we moms are great at adapting ideas to our kids and often get great results that way.

    Here are the links:

    http://developingchild.harvard.edu/resources/reports_and_working_papers/working_papers/wp12/

    http://developingchild.harvard.edu/resources/multimedia/videos/inbrief_series/inbrief_neglect/

    I’m a mom of adopted kids with special needs. That’s all. That’s enough. Please take what I now write from that perspective. I’m not a school-trained therapist, nurse or doctor, but I’m trained by my experience with my kids for my kids.

    Since your daughter likes keeping herself to herself, a weighted blanket might make her feel safe and cozy. I am giving you a link on how to make one yourself of have one made. Please pay special attention to the ratio of the weight of the blanket to the weight of your child since you want a safe item when finished:

    http://quiltingtutorials.com/browse-by-skill-level/intermediate-quilting-tutorials/weighted-blanket-tutorial/

    Even though she is older, she might also like to be swaddled. You should be able to get gauze fabric there easily, just hem the edge all the way around to prevent raveling.

    Off the top of my head, without a lot of experience with sensory issues of this magnitude, but given you location and limited professional resources, I’d suggest an approach of “starting over” with your daughter.

    First, she may need a womb-like environment. Semi-dark (I know she’s blind, but you didn’t mention if it’s complete), no sudden movements or those that cause her weight to suddenly shift. Imagine she’s in water in the womb. She’s feel your movements, hear your heartbeat, feel you rub your belly, so everything is muted. I guess I’m saying mute everything for her for now and see if she can relax. I can’t tell you for how long, but you’ll probably know. When you have to feed her, speak in a soft voice, when you bathe her, get into the bathtub with her skin-to-skin if you can. She may reject this, though, it’s hard to know if she can find a comfortable primal memory and go there or if this will incite her.

    The second phase is to treat her like a newborn. Don’t expose her to a lot of stimulation, outings, etc… Cosset her, protect her, give her long periods of rest and quietness. Play should be just like a newborn, no noisy toys.

    Then, judging by her actions, take her through the baby stages as she’s ready.

    If you choose to do this, be careful. Sometimes it can bring up very primal memories that are stored as feelings since she’s pre-verbal. I’m not suggesting birth-regression therapy, which can actually traumatize her, but trying to find the level of stimulation she’s comfortable with and where the trauma and damage occurred so she can have a chance to be comfortable then slowly, with your love and care, continue to develop.

    No one knows what your daughter’s potential is and it sounds like no one can accurately diagnose her, but it’s obvious that she was neglected and that means she has suffered developmentally and the effects are life-long, though not insurmountable.

    Oral aversion can be super hard to overcome, but possible. I’m not an expert on essential oils, but the strongest sense a baby has at birth is the sense of smell. In studies, newborns will turn to a breastpad soaked with their own mother’s milk when one soaked with the milk from another woman is placed on the other side. Experiment with touching her face gently along the nerves that stimulate sucking. Now it’s different between a bottle fed and breatfed baby, but generally, you’d use one finger to gently stroke along her lower jaw from about her earlobe to the side of her chin (along the lower edge of the lower jaw) and from just under the temple to the corner of her mouth. Two kinds of touching can be beneficial and stimulate different nerves. Feather-like touching and firmer touching. The firmer touching stimulates the proprioceptors, which are very important and might be more accepted and comfortable, but the lighter touches trigger primal reflexes that stimulate a baby to suck.

    Soothing creams or oils that are safe, like coconut oil, scented with calming scents or foods/spices, and gently applied to her lips might be a good transition to actually introducing new things into her mouth, especially if you can find a scent she positively responds to.

    I’m so glad you reached out. I hope you find the right information to help your daughter.

  7. KT says:

    Sorry, I forgot the link for the weighted blanket and just put it after the wrong post, so here it is again:

    http://quiltingtutorials.com/browse-by-skill-level/intermediate-quilting-tutorials/weighted-blanket-tutorial/

  8. SR says:

    Hello :)

    My daughter passed along your concerns.

    Please see the following websites for resources.
    http://www.spdfoundation.net
    http://sense-ationalmealtimes.com.au
    http://asensorylife.com

    Ideally (I’d recommend if you are able to find an Occupational Therapist and/or a Speech Language Pathologist training in Sensory challenges at mealtimes.)

    Be patient with her :) Model positively :)

    Best of luck and many blessings.
    Stacy :)

  9. Rachel says:

    I teach severely disabled kids and it sounds like she’s making slow progress (but progress) since being home with you. She’s only been home for 5 months. What we like to see is a year’s progress in a year’s time. She’s increasing her feeds and touching more things. She’s also in a fairly new environment with new expectations. That takes anyone a bit of time to adjust to.

    But this is feeding and weight, so obviously very concerning since she’s tiny to begin with. I agree with the other commenters about a high calorie formula, instant breakfast, Pediasure. If she can tolerate that for awhile, try a faster-flow bottle with thicker liquid: maybe whole milk yogurt mixed with the high calorie drink. If she hasn’t been exposed to baby food, it’s likely not just the taste/texture that’s bothering her. She may not know how to swallow it. I would gradually build up her tolerance of thicker liquids. You can continue to spoon feed her, but use whatever is in her bottle. Once you start baby food, have her smell it and go very slowly with introducing new flavors. If she likes yogurt, for example, mix a tiny bit of baby food into her yogurt.

    As far as other tactile aversions, is there anything that she likes touching or tolerates? If there is, reward her when she holds it by saying “touch!” Then move to other items that are close to the texture of what she likes/tolerates. If she likes soft blankets, move to a towel. If she likes rough textures like burlap, move to something softer like wool. Reward her in the same way, (saying “touch!” in a cheerfull voice).

    Some kids HATE vibration like vibrating toothbrushes, while others will sit with a vibrating toohbrush all day. One of my verbal autistic kids said that it feels like needles to her. Another student puts her vibrating toothbrush on her nose so that her sinuses and skull will vibrate. With toothbrushing, your daughter may do better with a regular toothbrush and a firm brushing. You can try a deep facial massage before brushing her teeth. If you rub her gums/teeth from the outside of her mouth prior to brushing her teeth, it may make her less sensitive. If she likes light touch, you can try the same technique but lightly. This will both warm up her mouth as well as cue her that her teeth will be brushed soon.

    You’re doing a great job by pushing her. You don’t want her to get the idea that she kicked and screamed for an hour and that was all it took for you to leave her alone, because that could become a pattern. Lots of positive reinforcement (whatever she likes) for any tiny gains.

    Also, with a visually impaired child, you can try narrating every situation so that she can know what to expect. “I’m holding your toothbrush and will put it into your mouth in 3, 2, 1, in…” Stick with the same cue (whatever you decide on) to warn her about any time she’ll be touched. “I’m going to pick you up. Ready, set, up.” “I’m going to hold your hand…one two three hand…now touch the book…one two three book.” Because visually impaired kids don’t know what to expect, they become defensive. She probably learned to keep her arms and legs in at the orphanage because that kept her safe from startling touches. I doubt they told her that they were going to put a bottle into her mouth or change her before doing so. After so many times, she learned how to protect herself. I’m betting her tight muscles also helped her get hurt less often. If you pick up a limp, sleeping child roughly, that child is more likely to pull a muscle than a child balled up in the fetal position. Since she probably didn’t know when she would be moved around, she put herself into her safe position all the time.

    I don’t think she’ll always need a warning before being touched, if this is linked to her vision impairment. Once she realizes that you’re not going to be rough with her, she will likely need less cueing. If she’s comfortable in a routine, for example, putting her into bed, then kissing her goodnight, you don’t have to add a prompt.

    I agree with the baby wearing suggestion. I wonder if something like an ergo baby carrier would help her relax her arms and legs a little. Her legs would have to be wrapped around you because of the nature of the carrier. You could try just sitting with her in it. When she’s comfortable with that, (warn her, then) stand up. Then you can try walking in place, and move on to walking. This might be a good bridge to new environments. If you’re going to a restaurant, she knows that she’s safe in her carrier and may not need to tense up or cover her ears. Then try to transition her onto your lap.

  10. Maureen says:

    It may be worth looking into Beckman Oral-Motor exercises, as well as some skin brushing protocols. If there is any way at all, to be seen by either a SLP or OT familiar with such, it would be best. I’d probably stop using a formal toothbrush, just use a finger brush (infant type) or gauze/finger, to reduce trauma & potential injury. Every calorie booster you can, but have an open mind to supplemented feeding (g-tube or similar) if you can’t sustain adequate hydration. It’s not forever, but will buy time to work through the sensory component without sacrificing adequate caloric intake for brain development.

  11. Nikki says:

    This is great… so helpful. Thank you all so much for your input!

    Nikki

  12. Sarah says:

    Has she been checked for infectious diseases and parasites? Recent research has indicated that a lot of malnutrition in India is due not to insufficient food intake but to chronic infections because of the sanitation issues there. In your child’s case it could be some combination of both. Since she spent the early part of her life in an orphanage, there are many ways she could be at increased risk for a chronic infection or series of infections. I would try to get that checked and possibly give probiotics if you can get them.

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