Kohen's Therapy and some reminiscence
I feel like I finally found some help for this kid! It's the greatest feeling ever, and I am excited to share what we've learned. Although, this didn't completely fix the problem (and we didn't expect it to), it has made a difference, and I am excited to see what other resources and things we can do. First thing's first - what am I even talking about?
For frequent readers, you may have seen my posts about Kohen's "psychological condition" called "Extreme Food Selectivity". The reason for the quotations around "psychological condition" is because it's a rare thing, that's more than just a picky eater, and one that's not really classified as being all that dangerous and etc..... so, it's more of a way for me to describe it.
You can google the name of the condition to read more about it, I'm just going to briefly describe it here. Extreme food selectivity, as I've said, is more than just a "picky eater"; it's not something that can be "fixed" with occupational therapy BECAUSE it's NOT a texture issue; and it's not something that a parent can manipulate. Using threats and phrases such as "it's this or nothing, go to bed hungry, you don't get dessert if you don't eat this and etc......." does not work - and trust me, we've tried.
In our lack of understanding and knowledge about this condition, we've tried harsher punishments, grand rewards, and plain ole shoving food in his mouth, only to have it be spit out or thrown up back on us, complete with gagging, choking, anger, and many tears.
Again, to be brief (but I will get into this deeper later in the post), the therapist and Kohen's pediatrician think this resulted (and has for many other children) from Kohen being a NICU baby who'd had tubes down this throat and struggled with respiratory issues for the majority of his babyhood. We first noticed that he was more than just a picky eater around the age of 2, when he would eat McDonald's chicken nuggets, but he would not eat star shaped ones from Burger King - and that's the gist of the issue.
Despite his chubbiness in pictures, he never was that into baby food, or any solid food for that matter. He would never lean towards the spoon, and would never really cry for it, either. We might as well have fed him because it was a cool thing to do.
As the years went on, it progressed into full anxiety over new foods. At the first sight of a new food touching his plate, he would run away in tears. If we asked him to put something in his mouth (it could be cake, candy, cupcakes, anything that a kid normally would LOVE), it was a full on battle, which never ended with him actually putting food into his mouth. This resulted into a very non-diversified and short, unhealthy menu.
We'd tried to look for some help, once the pediatrician informed us that this is an actual condition that must be dealt with, seeing how he'd had some patients who didn't just "grow out of it", but we could not find anyone who dealt with psychological issues with children. We'd employed a few ideas given to us by occupational therapists whom Tony worked with, but none of it got us anywhere.
Some days I'd do my best to find ways for him to try new foods, others it was a losing battle. We just became exhausted from the fits and fights at the dinner table, and just gave in by letting him eat what he liked. When we moved into our in-laws house, we no longer were the main meal planners or cooks, and occasionally we'd leave our kids to be babysat due to work and travel, so Kohen went for almost 2 years, eating what he pleased so no one would have to deal with his fits.
He'd developed a habit, and also an identity as "I'm the kid who gets special attention and special food brought to me", by acting out. We let him have his way, because we thought he'd starve (maybe, maybe not), and mostly because his fits and tantrums frustrated my in-laws so much that the stress of it all was too much for Tony and I, so we let him have his way. That's just what we did. We didn't know better, and we didn't realize that ones eating habits could be a large part of their identity. (well, hello!) We knew it wasn't healthy for him, but we both felt overpowered and helpless when it came to this issue, living in someone else's house. Not that it should have been an excuse for our child's health (and he was still healthy as a horse - so don't get me wrong, I am talking more about the social and physical repercussions later in life, than his immediate health).
To explain myself further, I want to talk about the reasons for why we care in the first place. Why not just leave the kid alone and let him eat what he likes, he will make his own choices one day anyway, right? Right, but if he doesn't know WHAT he can choose from, how can he really choose then? I found this to be a profound statement in a blog that I read about why this mom makes her children go to church (ha ha, but it totally applies!). So, that's point one. If we can't get him to put food in his mouth, he can't really know that he doesn't like it, and besides, some tastes are developed after a number of experiences. Second, his emotional outbursts are very taxing on others. I am sure there is nothing cuter than a grown man, making faces and whining because he doesn't like what his wife cooked, but what would be more problematic is that he can't physically put most food in his mouth even if he tried. This isn't like people who don't eat fish, that's one thing. BBQ's, birthday parties, dinners out, dating, school parties, prom, scouts, church trips, nights out with friends, or the simple lack of availability at the grocery store, and then what's he supposed to do?
I know what comes to mind for most people is that if the person truly is starving, they will eat what's available. But, him being 5, how far did we really want to push this? Also, having a number of medical scares and a few hospital trips in our past, I don't want to find out the hard way that maybe what the doctor said about him starving himself really is true. I mean starving your child just to find out that he really will eat fish sticks after 3 days is a little extreme. Although, who says it wouldn't work, maybe. But, will the lesson last - that's the question.
We have to keep the bigger picture in mind. We didn't want this to be about overpowering our child, because one day he will live on his own and purchase his own food. We didn't want him to look back on his childhood, thinking that his parents didn't try everything to help him (because we already tried shoving food in his mouth). We wanted this to be about him truly knowing what things taste like so that he can either a. extend his menu, b. develop new likes or c. make an informed decision about what he will not eat. We also, really, wanted his fighting, whining, face making and insanely obnoxious verbal food analysis to stop. (and oh boy, with his vocabulary and understanding, is he good at that!). Lastly, it didn't make us feel great, seeing our child struggle with anxiety over food.
The only things on Kohen's menu were:
French fries (it took a good year before he would eat them from other places other than McD's)
Ramon noodles (no other pasta of any kind)
Casadillas (which he changed his mind about eating, before liking them again)
Classic Lays potato chips
McD's chicken nuggets (no others would do till he was 5, and absolutely no chicken strips)
Boiled eggs/whites
Rice, only with cinnamon sugar on top
Plain white bread, no crust
Cheese
Kraft Mac n Cheese
Cinnamon Toast Crunch
Yogurt
Fruit/Applesauce
Pancakes (which took until 4 for him to try, and had to be swimming in syrup)
Milk
Ice cream
Candy
No meat, no vegetables, no pasta or mashed potatoes, no soups, no side dishes or salads, no crackers, no other chips, no other Mexican type of food (burritos, yellow rice, Cafe Rio; no lunch meat, no BBQ foods, no pizza n bread sticks, or any casserole/boiled pot type meals that one would eat with a fork or a spoon. The other thing is that some of the food that he would eat at home (like casadillas for example) he would not touch at restaurants because they looked different.
So you can see, how going out would be a little difficult, as is being invited to someone's house for dinner when they are not serving their kids' breakfast cereal or tubs of yogurt. Most of the things on the list had to be a particular brand, at that. Hence, no homemade Mac n Cheese at restaurants would do. Every time we ate somewhere besides our house, bags of chips, frozen yogurt tubes, bananas or apples had to be purchased and a ziplock bag of plain bread had to come along with us. I don't know how much packaged food we have purchased for this child.
Once we purchased our own home and moved out, Tony and I were free to deploy our new plan for Kohen. Except, we didn't really have a good one. We knew that he wasn't getting McDonald's every week, and he was going to try new foods, we just didn't know how. Just then, I was surfing around on Facebook and came across an event. It was some sort of an eating disorder seminar, held at PCMC. After reading about the event, I knew it wasn't exactly what we were looking for, but I'd contacted a lady by the name of Michelle Lewis (LCSW) in hopes that she would have some ideas/referrals for me. And so, she did!
She mentioned something called EMDR to help release the anxiety around eating. I was completely unfamiliar with this, and after reading about it I still wasn't sure this would be appropriate for a 5 year old who likely, has no memory of those events which caused his eating problem. You can read a description here:
http://www.emdr-therapy.com/emdr.html
However, because we had no other leads, we decided to go ahead and see what it could help. Michelle referred us to a lady named Deanna Nichols at SafePlace Counseling, South Jordan, UT. Deanna's expertise focus around young children with eating problems, so we decided to go ahead with her.
She didn't do the above exactly as described, probably because like I've said before, Kohen doesn't really have any traumatic memories of any specific event. She did use a buzzing instrument which Kohen held in his hands or behind his knees when talking about the things he didn't like to eat. I am not sure of the name of it, but it uses much the same technology in redirecting thoughts as the rapid eye movement procedure.
She started out by letting him play with plastic animals, just as he does at home, but the conversation evolved around things the animals liked to eat and those they didn't. It makes sense that children often have a hard time expressing their feelings and deepest thoughts verbally, so they are able to express them through play.
As interesting as this was, it was immediately obvious that Kohen would try to manipulate the conversation among the animals and would often turn them into enemies when one would suggest a new food to eat. Deanna would just play with Kohen on the floor, and for the majority of the hour, he would redirect the conversation to something other than food.
They did that for a couple of weeks.
Week 3
One week Deanna had us read Kohen the story of his birth, so that he would understand that this wasn't his fault and that his anxiety was influenced by an event which he did not remember. The following week, after Kohen had time to process the information, she wanted him to draw pictures in the order of the events that happened to him.
This isn't exactly what I wrote, his version was much simpler than that, but I wanted to share some specifics in hopes of reaching others with a similar situation.
One beautiful Sunday evening, a little boy named Kohen was born. His little face was so swollen, he could not open his eyes, but his parents delighted nonetheless, seeing his cute, chunky, baby body. He let out a small whimper before being placed into his father's arms. Not a few minutes later, his color started to change to that of gray and his father was the only one who noticed. Good thing. Kohen was taken for evaluation, and almost immediately given oxygen. It wasn't enough to help the little guy breathe fully, so more tests were done. The tests determined that Kohen was lacking surfactant at the bottom of his lungs which made them stick together, so he couldn't fully breathe. This was our first realization that we did not have a healthy baby, despite hoping for one, and not being told ahead of time that there could be a problem - which, in my opinion was a good move on the doctor's part, because had he been wrong, I would have spent my entire pregnancy thinking "what if something happens?", and who needs that in their life?
Now, I've had Type 1 Diabetes since 4 years old, and because Type 1 tends to affect the pregnancy negatively, this should not have been a surprise. This isn't the same as Gestational Diabetes, because my kind, doesn't go away after the baby is born, it just continues on and on, and on...... (come on little rats!)
This wasn't something that could have been prevented in utero, or spotted on the ultrasound, seeing how the baby gets most of the oxygen through the umbilical cord and does practice belly breathing from what they can see. The lung boosting drugs would not have worked because they have to be given before or around 35 weeks and I was past that, and neither leaving the baby till full term, due to the fact that diabetics' placentas tend to malfunction closer to the due date, resulting in still born babies. So, we delivered at 36.5 weeks with the help of pitocin. He wasn't even a preemie, but one lovely thing that my diabetes contributed was a fat, lazy baby on the outside, with underdeveloped organs on the inside. The doctor didn't know which way it was gonna go, seeing how there are plenty of healthy babies born to diabetic mothers anyway. (lucky!)
Once in the NICU, Kohen was on a full flow cannula (the tubes around his face and head), and also had to be intubated for the medicine to get in his lungs. And, because that wasn't exciting enough, he'd also gotten pneumonia, and had to have antibiotics given for that. Naturally, he couldn't eat through his mouth, so he was given food via nasal tube.
Both the therapist and Kohen's doctor think that all the tubes, the liquid in his lungs, the inability to breathe fully may have contributed to him not wanting anything near or in his mouth, which is why he never really expressed the desire for solids as a baby, and that may have developed into a fear of food that perhaps he thought, he couldn't swallow. We don't know 100%.
Once Kohen's face cleared of tubes, we began breastfeeding, but that didn't go as planned, go figure. I say that not because "breastfeeding is hard", but because Kohen was so lethargic, no matter what we did. It didn't matter what time of the day it was, or the fact that he hadn't eaten for a few hours. We'd deploy cold, wet rags and what we called "baby torture" by taking off his clothes and sitting him up. He'd open his eyes, look around, then pretend to sleep. He'd do anything, but open his mouth.
Because he eventually had to learn to eat through his mouth, we deployed hospital bottles, a preemie flow for Kohen. Stick one in his mouth and he had no choice but to swallow because the liquid came out anyway, even if he didn't suck. Shortly, we noticed that besides not finishing his feedings due to falling asleep, he would also choke almost every. single. time. Choking on milk is normal for newborns, however, not being able to cough it out and just giving up by not breathing and falling asleep - kind of isn't. Purple baby should not be a new color of baby.
He couldn't really coordinate the "breathe, suck, swallow" thing, or so we thought at first. After a few days of this, we'd summoned a swallowing therapist, who couldn't see anything wrong with him, so she'd made a few suggestions on how to feed him more effectively. When we took him home, we'd have to hold him like a football or turn him completely on his side, lay him on our laps, count to 3 sucks and then pull the bottle out to allow him to swallow what he had in his mouth. And on we would go like this, till his bottle was done. That was sure fun at 3 am.
We did mention this to his doctor around his 2m. appointment and he thought to look in Kohen's mouth. Why didn't anyone else? Lo and behold, Kohen was simply tongue-tied, so after he got his frenulum clipped, guess who took a bottle like a champ!
Around Kohen's 6m milestone, he'd started to get horrendous diarrhea. It only progressed to be worse. We're talking blood and raw skin. I don't know how many tubes of pink swizzle we went through, and those are not cheap. We thought it was a milk allergy, he was being fed formula by that point. With doctor's advice we'd switched to soy formula. As he got older, his diarrhea didn't improve with solids either, but we continued with the soy formula. We couldn't isolate any specific food because his diarrhea would come and go, obviously, regardless of what he ate.
Shortly after, Kohen would develop horrendous viruses. Sometimes they were rashes, sometimes just colds. Other times, he would get sick with something bacterial and require antibiotics. Also, I don't know how many bottles of that he drank before his 3rd birthday, but it seemed that he couldn't catch a break. Eventually, he developed C-Diff, which is this lovely bacteria that results from toxins in the bowels and taking too many antibiotics, and yet is killed with a really strong one. During those colds, we were prescribed a nebulizer and albuterol to help Kohen clear his airways. It would turn out, he would use it much more often than we'd hoped. (he's now 6 and apparently has seasonal asthma - one that acts up when he gets seasonal viruses and a prescribed inhaler that we haven't used, hooray). Because of the amount of colds that he got, his interest in eating was at zero. No one wants to eat when they are stuffed up with mucus.
When he was about 18 months old, he'd developed what we would later find out, a simple cold, by the name of Rhino virus. Like I said, simple cold, right? We spent an entire night, shuttling him back and forth between our house and the respiratory clinic to get his snot suctioned out, but it would just come right back and the poor little thing could no longer sleep. Once we were admitted to the pediatric floor, tubes had to be inserted not only to suction him out, but to feed him as well. At that point, he was a strong, chunky little fighter, so it took a team of 4 people and a good half an hour to wrestle with him in order to get the tubes in.
After a couple of days in the hospital, attached to an oxygen tank and a crib, we found out that it was just a simple cold that his body couldn't fight, and not RSV like all the doctors and nurses, dressing up in their yellow plastic gowns head to toe, thought. Good news! Don't worry, despite all this, Kohen has always been an excellent formula drinker, and this was no different. One day, my mom came in to visit him, and he so graciously puked an entire 8 oz. bottle of formula straight down her chest. Good times!
Since Kohen was 3 months old, I had either been in school full time or working, so on the days when both of us were working, he would have to be babysat. I am more than thankful for the help of so many wonderful ladies! When Kohen graduated baby food, I would sometimes pack snacks or something microwaveable for him to eat, but because most of my babysitters had their own kids, they would just offer him the same thing their kids were having, none of which he ate. At the time, I had given up on the feeding him thing, for the sake of needing a job and a babysitter, and allowed the babysitter to just give him milk. For most of his toddler hood, he'd had nothing but milk, day in and day out.
That made his eating experience with solids even harder, and perhaps much too late. I don't know if that was the wrong thing to do, maybe.
As we were getting ready to drink cow's milk, Kohen's doctor informed us that he was probably getting so much diarrhea due to the lack of fat in his diet. Oh, the soy milk, you mean? Yeah. So, he suggested that maybe he doesn't have an allergy to milk, but simply needs more fat. Surprise, surprise! So we were doing it all wrong. Ah, you live and you learn.
So as you see, Kohen's experience with food has never been great. There's always been one problem or another, and while in the moment, we never knew it all could affect him like this.
Week 4
Following the week after we'd read Kohen's birth story to him, this is what he drew. He wasn't that into it, but we know he does understand that there is a reason for the hard time he's having.
I know his drawing doesn't make any sense, he was a 5 year old boy, at the time. He drew mostly sad babies who were crying because they didn't feel good. So Deanna made sure to end the session with the affirmation that this wasn't Kohen's fault and that because he is healthy now, he can learn to put food in his mouth that he wasn't able to when he was a baby.
Week 5
Another week Deanna gave Kohen a blank body print out and had him color where he felt the food in his body. She would name things that he liked to eat and those he didn't. Although, I didn't write down his specific responses, I watched him color all the "yucky" foods below his waist, as to keep them far away from his mouth; and all the foods that he liked, he colored near his mouth because they tasted good. That was interesting because we didn't realize just how much he didn't like certain foods near his mouth, let alone in it. That was a barrier he had to break though, because not all foods taste like what you would think.
She then, spent time talking about how other foods would feel in his body, and asked him to think about making them taste good in his mind, thus redirecting it to a positive experience.
Week 6
One interesting thing Deanna did with Kohen this week was to have him identify essential oils by their smell. She brought in as many typical food flavors as she could find, and then also some perfumy and flowery ones to see if he could tell the difference. She wanted to see if his sense of smell was affecting him negatively in regards to putting food in his mouth.
He got all of them right, and almost exactly, identified them by name. Of course, cinnamon was his favorite smell. Likewise, Cinnamon Toast Crunch had been his survival cereal for a couple of years at that point. This showed us that he is a sensitive taster with a keen sense of smell. It would make sense why it's so difficult for him to put food near his mouth, when his sense of smell is creating negative schemes in his head.
Week 8
This one was a "toughy" for Kohen. Deanna asked us to bring in some actual food into the office. The goal was to try a carrot, a piece of raw broccoli with ranch, and then to get rewarded with cinnamon toast crunch.
Through her verbal coaching, Kohen did try the broccoli with ranch, but took almost the entire hour eating one small carrot. He would do his usual mouse bites, while verbally giving all the reasons in the world for why this and why that.......(we call this his obnoxious food analysis).
When we got home, his job was to eat more carrots that week and add another vegetable, which happened to be a cucumber. Kohen still isn't a fan of dipping sauces, as of yet.
Week 9&10
The last couple of weeks, Deanna and Kohen played more games on the floor that weren't so centered around the topic of food, but were more of a reward for his cooperation. Deanna decided at that point that there wasn't much else she could do for him. However, she wanted us to continue giving him new foods to try, now, that he wasn't experiencing so much anxiety at the sight of them.
We agreed to communicate over email and maybe visit her once in a while to see if she could push him to try harder foods like something out of a crock pot or something cooked on the stove, etc.....because, sometimes kids will do things for other people that they won't do for the parents, ha!
Since finishing the therapy, Kohen's attitude about food is SO. MUCH. MORE. PLEASANT. It's so nice! Looking back, taking him at 5 years old was clearly the right decision. He was old enough to understand some complexities, like that we were trying to help him and a bit more about the human body and why it needs a diverse menu. He was able to communicate with Deanna and express himself verbally, and I think the experience will stay in his mind, after all. He still does experience hesitation and occasional tears and complaining when it comes to putting something in his mouth, but low and behold - he has new foods he will eat, and actually likes; and for that I am grateful!
Kohen new adittions are:
plain chicken patties
hot dogs
any kind of bread, including dinner rolls
cucumbers
carrots
any kind of pasta (not Ramen, yay!), with Parmesan cheese
cheese pizza (with minimal sauce)
casadillas with turkey in the middle
a basic sandwich (lunch meat n cheese)
other dry cereal besides cinnamon toast crunch
He's tried some other new foods, including oatmeal, other dry cereal, salmon, fish sticks, sour cream, guacamole, steamed broccoli and chicken pot stickers (which he deemed a "maybe" on his list), we have still yet to conquer chicken strips and grilled chicken, but I am optimistic about them! I don't know about PB&J ever, because he seems to hate peanut butter, but maybe nutella sandwiches are in our future?
We are both very hopeful that he will continue on and eventually be able to eat at least one or two things from the dinner table, no matter what is served. As I've said in the beginning, the therapy didn't fix the issue completely, but what it did help is at least remove the majority of his anxiety about putting new food in his mouth. If we can just get him to try something, he might end up liking it - and that was our goal!
Mission accomplished.....................sorta!
For frequent readers, you may have seen my posts about Kohen's "psychological condition" called "Extreme Food Selectivity". The reason for the quotations around "psychological condition" is because it's a rare thing, that's more than just a picky eater, and one that's not really classified as being all that dangerous and etc..... so, it's more of a way for me to describe it.
You can google the name of the condition to read more about it, I'm just going to briefly describe it here. Extreme food selectivity, as I've said, is more than just a "picky eater"; it's not something that can be "fixed" with occupational therapy BECAUSE it's NOT a texture issue; and it's not something that a parent can manipulate. Using threats and phrases such as "it's this or nothing, go to bed hungry, you don't get dessert if you don't eat this and etc......." does not work - and trust me, we've tried.
In our lack of understanding and knowledge about this condition, we've tried harsher punishments, grand rewards, and plain ole shoving food in his mouth, only to have it be spit out or thrown up back on us, complete with gagging, choking, anger, and many tears.
Again, to be brief (but I will get into this deeper later in the post), the therapist and Kohen's pediatrician think this resulted (and has for many other children) from Kohen being a NICU baby who'd had tubes down this throat and struggled with respiratory issues for the majority of his babyhood. We first noticed that he was more than just a picky eater around the age of 2, when he would eat McDonald's chicken nuggets, but he would not eat star shaped ones from Burger King - and that's the gist of the issue.
Despite his chubbiness in pictures, he never was that into baby food, or any solid food for that matter. He would never lean towards the spoon, and would never really cry for it, either. We might as well have fed him because it was a cool thing to do.
As the years went on, it progressed into full anxiety over new foods. At the first sight of a new food touching his plate, he would run away in tears. If we asked him to put something in his mouth (it could be cake, candy, cupcakes, anything that a kid normally would LOVE), it was a full on battle, which never ended with him actually putting food into his mouth. This resulted into a very non-diversified and short, unhealthy menu.
We'd tried to look for some help, once the pediatrician informed us that this is an actual condition that must be dealt with, seeing how he'd had some patients who didn't just "grow out of it", but we could not find anyone who dealt with psychological issues with children. We'd employed a few ideas given to us by occupational therapists whom Tony worked with, but none of it got us anywhere.
He'd developed a habit, and also an identity as "I'm the kid who gets special attention and special food brought to me", by acting out. We let him have his way, because we thought he'd starve (maybe, maybe not), and mostly because his fits and tantrums frustrated my in-laws so much that the stress of it all was too much for Tony and I, so we let him have his way. That's just what we did. We didn't know better, and we didn't realize that ones eating habits could be a large part of their identity. (well, hello!) We knew it wasn't healthy for him, but we both felt overpowered and helpless when it came to this issue, living in someone else's house. Not that it should have been an excuse for our child's health (and he was still healthy as a horse - so don't get me wrong, I am talking more about the social and physical repercussions later in life, than his immediate health).
To explain myself further, I want to talk about the reasons for why we care in the first place. Why not just leave the kid alone and let him eat what he likes, he will make his own choices one day anyway, right? Right, but if he doesn't know WHAT he can choose from, how can he really choose then? I found this to be a profound statement in a blog that I read about why this mom makes her children go to church (ha ha, but it totally applies!). So, that's point one. If we can't get him to put food in his mouth, he can't really know that he doesn't like it, and besides, some tastes are developed after a number of experiences. Second, his emotional outbursts are very taxing on others. I am sure there is nothing cuter than a grown man, making faces and whining because he doesn't like what his wife cooked, but what would be more problematic is that he can't physically put most food in his mouth even if he tried. This isn't like people who don't eat fish, that's one thing. BBQ's, birthday parties, dinners out, dating, school parties, prom, scouts, church trips, nights out with friends, or the simple lack of availability at the grocery store, and then what's he supposed to do?
I know what comes to mind for most people is that if the person truly is starving, they will eat what's available. But, him being 5, how far did we really want to push this? Also, having a number of medical scares and a few hospital trips in our past, I don't want to find out the hard way that maybe what the doctor said about him starving himself really is true. I mean starving your child just to find out that he really will eat fish sticks after 3 days is a little extreme. Although, who says it wouldn't work, maybe. But, will the lesson last - that's the question.
The only things on Kohen's menu were:
French fries (it took a good year before he would eat them from other places other than McD's)
Ramon noodles (no other pasta of any kind)
Casadillas (which he changed his mind about eating, before liking them again)
Classic Lays potato chips
McD's chicken nuggets (no others would do till he was 5, and absolutely no chicken strips)
Boiled eggs/whites
Rice, only with cinnamon sugar on top
Plain white bread, no crust
Cheese
Kraft Mac n Cheese
Cinnamon Toast Crunch
Yogurt
Fruit/Applesauce
Pancakes (which took until 4 for him to try, and had to be swimming in syrup)
Milk
Ice cream
Candy
No meat, no vegetables, no pasta or mashed potatoes, no soups, no side dishes or salads, no crackers, no other chips, no other Mexican type of food (burritos, yellow rice, Cafe Rio; no lunch meat, no BBQ foods, no pizza n bread sticks, or any casserole/boiled pot type meals that one would eat with a fork or a spoon. The other thing is that some of the food that he would eat at home (like casadillas for example) he would not touch at restaurants because they looked different.
So you can see, how going out would be a little difficult, as is being invited to someone's house for dinner when they are not serving their kids' breakfast cereal or tubs of yogurt. Most of the things on the list had to be a particular brand, at that. Hence, no homemade Mac n Cheese at restaurants would do. Every time we ate somewhere besides our house, bags of chips, frozen yogurt tubes, bananas or apples had to be purchased and a ziplock bag of plain bread had to come along with us. I don't know how much packaged food we have purchased for this child.
Once we purchased our own home and moved out, Tony and I were free to deploy our new plan for Kohen. Except, we didn't really have a good one. We knew that he wasn't getting McDonald's every week, and he was going to try new foods, we just didn't know how. Just then, I was surfing around on Facebook and came across an event. It was some sort of an eating disorder seminar, held at PCMC. After reading about the event, I knew it wasn't exactly what we were looking for, but I'd contacted a lady by the name of Michelle Lewis (LCSW) in hopes that she would have some ideas/referrals for me. And so, she did!
She mentioned something called EMDR to help release the anxiety around eating. I was completely unfamiliar with this, and after reading about it I still wasn't sure this would be appropriate for a 5 year old who likely, has no memory of those events which caused his eating problem. You can read a description here:
http://www.emdr-therapy.com/emdr.html
However, because we had no other leads, we decided to go ahead and see what it could help. Michelle referred us to a lady named Deanna Nichols at SafePlace Counseling, South Jordan, UT. Deanna's expertise focus around young children with eating problems, so we decided to go ahead with her.
She didn't do the above exactly as described, probably because like I've said before, Kohen doesn't really have any traumatic memories of any specific event. She did use a buzzing instrument which Kohen held in his hands or behind his knees when talking about the things he didn't like to eat. I am not sure of the name of it, but it uses much the same technology in redirecting thoughts as the rapid eye movement procedure.
She started out by letting him play with plastic animals, just as he does at home, but the conversation evolved around things the animals liked to eat and those they didn't. It makes sense that children often have a hard time expressing their feelings and deepest thoughts verbally, so they are able to express them through play.
As interesting as this was, it was immediately obvious that Kohen would try to manipulate the conversation among the animals and would often turn them into enemies when one would suggest a new food to eat. Deanna would just play with Kohen on the floor, and for the majority of the hour, he would redirect the conversation to something other than food.
They did that for a couple of weeks.
Week 3
One week Deanna had us read Kohen the story of his birth, so that he would understand that this wasn't his fault and that his anxiety was influenced by an event which he did not remember. The following week, after Kohen had time to process the information, she wanted him to draw pictures in the order of the events that happened to him.
This isn't exactly what I wrote, his version was much simpler than that, but I wanted to share some specifics in hopes of reaching others with a similar situation.
One beautiful Sunday evening, a little boy named Kohen was born. His little face was so swollen, he could not open his eyes, but his parents delighted nonetheless, seeing his cute, chunky, baby body. He let out a small whimper before being placed into his father's arms. Not a few minutes later, his color started to change to that of gray and his father was the only one who noticed. Good thing. Kohen was taken for evaluation, and almost immediately given oxygen. It wasn't enough to help the little guy breathe fully, so more tests were done. The tests determined that Kohen was lacking surfactant at the bottom of his lungs which made them stick together, so he couldn't fully breathe. This was our first realization that we did not have a healthy baby, despite hoping for one, and not being told ahead of time that there could be a problem - which, in my opinion was a good move on the doctor's part, because had he been wrong, I would have spent my entire pregnancy thinking "what if something happens?", and who needs that in their life?
Now, I've had Type 1 Diabetes since 4 years old, and because Type 1 tends to affect the pregnancy negatively, this should not have been a surprise. This isn't the same as Gestational Diabetes, because my kind, doesn't go away after the baby is born, it just continues on and on, and on...... (come on little rats!)
This wasn't something that could have been prevented in utero, or spotted on the ultrasound, seeing how the baby gets most of the oxygen through the umbilical cord and does practice belly breathing from what they can see. The lung boosting drugs would not have worked because they have to be given before or around 35 weeks and I was past that, and neither leaving the baby till full term, due to the fact that diabetics' placentas tend to malfunction closer to the due date, resulting in still born babies. So, we delivered at 36.5 weeks with the help of pitocin. He wasn't even a preemie, but one lovely thing that my diabetes contributed was a fat, lazy baby on the outside, with underdeveloped organs on the inside. The doctor didn't know which way it was gonna go, seeing how there are plenty of healthy babies born to diabetic mothers anyway. (lucky!)
Once in the NICU, Kohen was on a full flow cannula (the tubes around his face and head), and also had to be intubated for the medicine to get in his lungs. And, because that wasn't exciting enough, he'd also gotten pneumonia, and had to have antibiotics given for that. Naturally, he couldn't eat through his mouth, so he was given food via nasal tube.
Both the therapist and Kohen's doctor think that all the tubes, the liquid in his lungs, the inability to breathe fully may have contributed to him not wanting anything near or in his mouth, which is why he never really expressed the desire for solids as a baby, and that may have developed into a fear of food that perhaps he thought, he couldn't swallow. We don't know 100%.
Once Kohen's face cleared of tubes, we began breastfeeding, but that didn't go as planned, go figure. I say that not because "breastfeeding is hard", but because Kohen was so lethargic, no matter what we did. It didn't matter what time of the day it was, or the fact that he hadn't eaten for a few hours. We'd deploy cold, wet rags and what we called "baby torture" by taking off his clothes and sitting him up. He'd open his eyes, look around, then pretend to sleep. He'd do anything, but open his mouth.
Because he eventually had to learn to eat through his mouth, we deployed hospital bottles, a preemie flow for Kohen. Stick one in his mouth and he had no choice but to swallow because the liquid came out anyway, even if he didn't suck. Shortly, we noticed that besides not finishing his feedings due to falling asleep, he would also choke almost every. single. time. Choking on milk is normal for newborns, however, not being able to cough it out and just giving up by not breathing and falling asleep - kind of isn't. Purple baby should not be a new color of baby.
He couldn't really coordinate the "breathe, suck, swallow" thing, or so we thought at first. After a few days of this, we'd summoned a swallowing therapist, who couldn't see anything wrong with him, so she'd made a few suggestions on how to feed him more effectively. When we took him home, we'd have to hold him like a football or turn him completely on his side, lay him on our laps, count to 3 sucks and then pull the bottle out to allow him to swallow what he had in his mouth. And on we would go like this, till his bottle was done. That was sure fun at 3 am.
We did mention this to his doctor around his 2m. appointment and he thought to look in Kohen's mouth. Why didn't anyone else? Lo and behold, Kohen was simply tongue-tied, so after he got his frenulum clipped, guess who took a bottle like a champ!
Around Kohen's 6m milestone, he'd started to get horrendous diarrhea. It only progressed to be worse. We're talking blood and raw skin. I don't know how many tubes of pink swizzle we went through, and those are not cheap. We thought it was a milk allergy, he was being fed formula by that point. With doctor's advice we'd switched to soy formula. As he got older, his diarrhea didn't improve with solids either, but we continued with the soy formula. We couldn't isolate any specific food because his diarrhea would come and go, obviously, regardless of what he ate.
Shortly after, Kohen would develop horrendous viruses. Sometimes they were rashes, sometimes just colds. Other times, he would get sick with something bacterial and require antibiotics. Also, I don't know how many bottles of that he drank before his 3rd birthday, but it seemed that he couldn't catch a break. Eventually, he developed C-Diff, which is this lovely bacteria that results from toxins in the bowels and taking too many antibiotics, and yet is killed with a really strong one. During those colds, we were prescribed a nebulizer and albuterol to help Kohen clear his airways. It would turn out, he would use it much more often than we'd hoped. (he's now 6 and apparently has seasonal asthma - one that acts up when he gets seasonal viruses and a prescribed inhaler that we haven't used, hooray). Because of the amount of colds that he got, his interest in eating was at zero. No one wants to eat when they are stuffed up with mucus.
When he was about 18 months old, he'd developed what we would later find out, a simple cold, by the name of Rhino virus. Like I said, simple cold, right? We spent an entire night, shuttling him back and forth between our house and the respiratory clinic to get his snot suctioned out, but it would just come right back and the poor little thing could no longer sleep. Once we were admitted to the pediatric floor, tubes had to be inserted not only to suction him out, but to feed him as well. At that point, he was a strong, chunky little fighter, so it took a team of 4 people and a good half an hour to wrestle with him in order to get the tubes in.
After a couple of days in the hospital, attached to an oxygen tank and a crib, we found out that it was just a simple cold that his body couldn't fight, and not RSV like all the doctors and nurses, dressing up in their yellow plastic gowns head to toe, thought. Good news! Don't worry, despite all this, Kohen has always been an excellent formula drinker, and this was no different. One day, my mom came in to visit him, and he so graciously puked an entire 8 oz. bottle of formula straight down her chest. Good times!
Since Kohen was 3 months old, I had either been in school full time or working, so on the days when both of us were working, he would have to be babysat. I am more than thankful for the help of so many wonderful ladies! When Kohen graduated baby food, I would sometimes pack snacks or something microwaveable for him to eat, but because most of my babysitters had their own kids, they would just offer him the same thing their kids were having, none of which he ate. At the time, I had given up on the feeding him thing, for the sake of needing a job and a babysitter, and allowed the babysitter to just give him milk. For most of his toddler hood, he'd had nothing but milk, day in and day out.
That made his eating experience with solids even harder, and perhaps much too late. I don't know if that was the wrong thing to do, maybe.
As we were getting ready to drink cow's milk, Kohen's doctor informed us that he was probably getting so much diarrhea due to the lack of fat in his diet. Oh, the soy milk, you mean? Yeah. So, he suggested that maybe he doesn't have an allergy to milk, but simply needs more fat. Surprise, surprise! So we were doing it all wrong. Ah, you live and you learn.
So as you see, Kohen's experience with food has never been great. There's always been one problem or another, and while in the moment, we never knew it all could affect him like this.
Week 4
Following the week after we'd read Kohen's birth story to him, this is what he drew. He wasn't that into it, but we know he does understand that there is a reason for the hard time he's having.
I know his drawing doesn't make any sense, he was a 5 year old boy, at the time. He drew mostly sad babies who were crying because they didn't feel good. So Deanna made sure to end the session with the affirmation that this wasn't Kohen's fault and that because he is healthy now, he can learn to put food in his mouth that he wasn't able to when he was a baby.
Week 5
Another week Deanna gave Kohen a blank body print out and had him color where he felt the food in his body. She would name things that he liked to eat and those he didn't. Although, I didn't write down his specific responses, I watched him color all the "yucky" foods below his waist, as to keep them far away from his mouth; and all the foods that he liked, he colored near his mouth because they tasted good. That was interesting because we didn't realize just how much he didn't like certain foods near his mouth, let alone in it. That was a barrier he had to break though, because not all foods taste like what you would think.
She then, spent time talking about how other foods would feel in his body, and asked him to think about making them taste good in his mind, thus redirecting it to a positive experience.
Week 6
One interesting thing Deanna did with Kohen this week was to have him identify essential oils by their smell. She brought in as many typical food flavors as she could find, and then also some perfumy and flowery ones to see if he could tell the difference. She wanted to see if his sense of smell was affecting him negatively in regards to putting food in his mouth.
He got all of them right, and almost exactly, identified them by name. Of course, cinnamon was his favorite smell. Likewise, Cinnamon Toast Crunch had been his survival cereal for a couple of years at that point. This showed us that he is a sensitive taster with a keen sense of smell. It would make sense why it's so difficult for him to put food near his mouth, when his sense of smell is creating negative schemes in his head.
Week 8
This one was a "toughy" for Kohen. Deanna asked us to bring in some actual food into the office. The goal was to try a carrot, a piece of raw broccoli with ranch, and then to get rewarded with cinnamon toast crunch.
Through her verbal coaching, Kohen did try the broccoli with ranch, but took almost the entire hour eating one small carrot. He would do his usual mouse bites, while verbally giving all the reasons in the world for why this and why that.......(we call this his obnoxious food analysis).
When we got home, his job was to eat more carrots that week and add another vegetable, which happened to be a cucumber. Kohen still isn't a fan of dipping sauces, as of yet.
Week 9&10
The last couple of weeks, Deanna and Kohen played more games on the floor that weren't so centered around the topic of food, but were more of a reward for his cooperation. Deanna decided at that point that there wasn't much else she could do for him. However, she wanted us to continue giving him new foods to try, now, that he wasn't experiencing so much anxiety at the sight of them.
We agreed to communicate over email and maybe visit her once in a while to see if she could push him to try harder foods like something out of a crock pot or something cooked on the stove, etc.....because, sometimes kids will do things for other people that they won't do for the parents, ha!
Since finishing the therapy, Kohen's attitude about food is SO. MUCH. MORE. PLEASANT. It's so nice! Looking back, taking him at 5 years old was clearly the right decision. He was old enough to understand some complexities, like that we were trying to help him and a bit more about the human body and why it needs a diverse menu. He was able to communicate with Deanna and express himself verbally, and I think the experience will stay in his mind, after all. He still does experience hesitation and occasional tears and complaining when it comes to putting something in his mouth, but low and behold - he has new foods he will eat, and actually likes; and for that I am grateful!
Kohen new adittions are:
plain chicken patties
hot dogs
any kind of bread, including dinner rolls
cucumbers
carrots
any kind of pasta (not Ramen, yay!), with Parmesan cheese
cheese pizza (with minimal sauce)
casadillas with turkey in the middle
a basic sandwich (lunch meat n cheese)
other dry cereal besides cinnamon toast crunch
He's tried some other new foods, including oatmeal, other dry cereal, salmon, fish sticks, sour cream, guacamole, steamed broccoli and chicken pot stickers (which he deemed a "maybe" on his list), we have still yet to conquer chicken strips and grilled chicken, but I am optimistic about them! I don't know about PB&J ever, because he seems to hate peanut butter, but maybe nutella sandwiches are in our future?
We are both very hopeful that he will continue on and eventually be able to eat at least one or two things from the dinner table, no matter what is served. As I've said in the beginning, the therapy didn't fix the issue completely, but what it did help is at least remove the majority of his anxiety about putting new food in his mouth. If we can just get him to try something, he might end up liking it - and that was our goal!
Mission accomplished.....................sorta!
