An hour ago if you had told me my daughter would eat tomato soup and honey roasted turkey lunch meat tonight... I probably would have bet against you. A million times against you. I would have been indebted to you for a really long time, and I would have still been in shock.
The thing with oral aversions and feeding disorders is that we just don't understand them, looking in from the outside. We don't understand that if you are hungry, why can you not eat? That you would rather starve to death than eat what you are afraid of. It's an irrational fear to us, most of the world, but to you it's very real. Very terrifying and anxiety driven.
It's been an hour and I'm still crying. Real food. There are only a few. I can count them on my hands. I know the brand, flavor and quantity. I, for the first time in almost five years see a light at the end of this tunnel. Don't give up, I was told. In her own time, I heard, and it is happening slowly...ever so slowly before my eyes.
Let me back up to almost five years ago. My daughter was born at 34 weeks, but IUGR to the size of a 29 week baby at only 3lbs 5ozs. From day one she had trouble drinking her bottle, she couldn't keep the milk down. They had to start with ngtube feedings that were only 5ccs. Feeding continued to be a struggle as she grew; every bottle I said a prayer for her to drink a little more and keep it down. Doctors didn't have clear answers. They diagnosed her with failure to thrive. A horrible term for a mom who is trying with all her might to get her daughter to survive and thrive. They did so many tests, but could not find reasons for her lack of appetite and low volume feedings. At 5 months old, she was only drinking 12 ozs in a 24hr period and so she was admitted into the hospital by her cardiologist. They felt it was time for open heart surgery to fix her Congenital Heart defects, an ASD and VSD, suspecting her congestive heart failure was causing too much stress and exhaustion. Surgery was successful, but after a couple months things were worse again. She started vomiting, weekly then daily. The doctors tried more medications for reflux and did more tests but nothing was clear as to why she had trouble eating.
At 9 months old, she was still only able to drink upto 4 ozs at a feeding, any more than that and she would vomit it back up. We took her to another GI doctor at Johns Hopkins desperate to find answers. The doctor mentioned that having a gastrointestinal feeding tube might help, but mostly by relieving the stress I was now under, not increasing the amount of food since it would not stop her from vomiting. I was feeding her every two and a half hrs all day and our nights were exhausting and stressful, but I knew she needed the calories and she was unable to get them during daytime hours alone. I refused the gtube, I would set my clock and do night feedings as long as she needed, that ended up being another year and a half.
The doctor suspected delayed gastric emptying and prescribed medication as well as high calorie powder to increase her intake. At a year for an unknown reason, she refused the foods she had previously liked. All she wanted was her bottle. Fear started to creep in again and doctors were getting concerned. Once again we went in for evaluations and over that year saw a speech pathologist, feeding team and child psychologist who specialilized in feeding problems. After a few evaluations we came up with a name for her inability to eat, well actually a few.
When she was an infant, the doctor said she probably had infantile anorexia, and through what she endured medically she developed PTSD as well as medically induced feeding disorder. She also was diagnosed with sensory feeding aversions, neophobia, or fear of food, and selective eating disorder. We were told she had sensory processing disorder, autism and anxiety which all played a roll in her feeding aversions. We were in a whirlwind of emotions because now we had all these diagnosis, but what do we do with them? Our little girl was afraid to eat, terrified to the point of vomiting when she was too close or even smelled certain foods. Where do we go from there?
We looked into hospitals and feeding clinics but they mainly dealt with children who were picky or had behavioural feeding issues, not sensory ones. We took her to feeding rehabilitation for a year until the therapist discharged her. It wasn't that our daughter couldn't eat, mechanically, but she was incapable to actually get the foods to her mouth with gagging. So began the long journey... Years of trying to reintroduce foods into her life. Trying to just get back to the foods she liked in her past. She survived on a high calorie/high protein drink I would make for her daily. Otherwise, her main food was plain Cheerios.
What I didn't realize at the time, was a practice we started became the beginning to our food journey...and that was helping mommy cook. When we would cook, she would have to touch and smell foods. She began by running to the sink every time her hands got messy, but eventually she started staying longer and getting messy in order to make a meal. After a while she was making meatloaf and meatballs with me. Cutting chicken became a favorite chore for her. She would smell the spices as we added them to pots and bowls. I do believe this started her journey towards tasting without gagging or coughing.
Slowly we added other beige, dry and crunchy foods. Certain flavors became more preferred than others. At 41/2 years old , she ate cheese pizza. A two year struggle to go from plain pizza crust to an entire slice. We added more, ever so slowly, like licking yogurt and ice cream. Breads of different textures and flavors, crackers and chips as well. Just last week she licked ice cream. She used to love ice cream. I would buy the highest calorie ice cream I could find and add heavy cream! Now, she is licking it, so it's a start.
Today she smelled my turkey sandwich cooking in the oven. She asked if it was bacon, the only meat she would eat, but it had to be crispy! I told her no, but I think she wanted to try it for herself. Wet turkey with mayonnaise and sprinkled Parmesan. What a combination. I have no idea how she got up the courage to try it, but I'm so proud of her and glad she did. Then, to top it off and make my eyes blurry with tears... She wanted to try my tomato soup. This one, this idea, was incredible. Liquid food and big flavor, so very different for her palate. I was so impressed by her. I don't know how to express how hard it is having a child with multiple eating disorders to go outside of their safe zone. People don't understand a child who doesn't care for cookies, candy or cake. So I try to explain the best I can, what she's feeling inside. Because to me, she's so very strong. It takes a lot of strength to be starving but still refuse to eat. She's so resilient, she has been through so much pain with her open heart surgery, and is the happiest girl I know. The world has a lot of smells and tastes and I'm hoping she will slowly overcome her anxieties and use the courage that I know she has.
The thing with oral aversions and feeding disorders is that we just don't understand them, looking in from the outside. We don't understand that if you are hungry, why can you not eat? That you would rather starve to death than eat what you are afraid of. It's an irrational fear to us, most of the world, but to you it's very real. Very terrifying and anxiety driven.
It's been an hour and I'm still crying. Real food. There are only a few. I can count them on my hands. I know the brand, flavor and quantity. I, for the first time in almost five years see a light at the end of this tunnel. Don't give up, I was told. In her own time, I heard, and it is happening slowly...ever so slowly before my eyes.
Let me back up to almost five years ago. My daughter was born at 34 weeks, but IUGR to the size of a 29 week baby at only 3lbs 5ozs. From day one she had trouble drinking her bottle, she couldn't keep the milk down. They had to start with ngtube feedings that were only 5ccs. Feeding continued to be a struggle as she grew; every bottle I said a prayer for her to drink a little more and keep it down. Doctors didn't have clear answers. They diagnosed her with failure to thrive. A horrible term for a mom who is trying with all her might to get her daughter to survive and thrive. They did so many tests, but could not find reasons for her lack of appetite and low volume feedings. At 5 months old, she was only drinking 12 ozs in a 24hr period and so she was admitted into the hospital by her cardiologist. They felt it was time for open heart surgery to fix her Congenital Heart defects, an ASD and VSD, suspecting her congestive heart failure was causing too much stress and exhaustion. Surgery was successful, but after a couple months things were worse again. She started vomiting, weekly then daily. The doctors tried more medications for reflux and did more tests but nothing was clear as to why she had trouble eating.
At 9 months old, she was still only able to drink upto 4 ozs at a feeding, any more than that and she would vomit it back up. We took her to another GI doctor at Johns Hopkins desperate to find answers. The doctor mentioned that having a gastrointestinal feeding tube might help, but mostly by relieving the stress I was now under, not increasing the amount of food since it would not stop her from vomiting. I was feeding her every two and a half hrs all day and our nights were exhausting and stressful, but I knew she needed the calories and she was unable to get them during daytime hours alone. I refused the gtube, I would set my clock and do night feedings as long as she needed, that ended up being another year and a half.
The doctor suspected delayed gastric emptying and prescribed medication as well as high calorie powder to increase her intake. At a year for an unknown reason, she refused the foods she had previously liked. All she wanted was her bottle. Fear started to creep in again and doctors were getting concerned. Once again we went in for evaluations and over that year saw a speech pathologist, feeding team and child psychologist who specialilized in feeding problems. After a few evaluations we came up with a name for her inability to eat, well actually a few.
When she was an infant, the doctor said she probably had infantile anorexia, and through what she endured medically she developed PTSD as well as medically induced feeding disorder. She also was diagnosed with sensory feeding aversions, neophobia, or fear of food, and selective eating disorder. We were told she had sensory processing disorder, autism and anxiety which all played a roll in her feeding aversions. We were in a whirlwind of emotions because now we had all these diagnosis, but what do we do with them? Our little girl was afraid to eat, terrified to the point of vomiting when she was too close or even smelled certain foods. Where do we go from there?
We looked into hospitals and feeding clinics but they mainly dealt with children who were picky or had behavioural feeding issues, not sensory ones. We took her to feeding rehabilitation for a year until the therapist discharged her. It wasn't that our daughter couldn't eat, mechanically, but she was incapable to actually get the foods to her mouth with gagging. So began the long journey... Years of trying to reintroduce foods into her life. Trying to just get back to the foods she liked in her past. She survived on a high calorie/high protein drink I would make for her daily. Otherwise, her main food was plain Cheerios.
What I didn't realize at the time, was a practice we started became the beginning to our food journey...and that was helping mommy cook. When we would cook, she would have to touch and smell foods. She began by running to the sink every time her hands got messy, but eventually she started staying longer and getting messy in order to make a meal. After a while she was making meatloaf and meatballs with me. Cutting chicken became a favorite chore for her. She would smell the spices as we added them to pots and bowls. I do believe this started her journey towards tasting without gagging or coughing.
Slowly we added other beige, dry and crunchy foods. Certain flavors became more preferred than others. At 41/2 years old , she ate cheese pizza. A two year struggle to go from plain pizza crust to an entire slice. We added more, ever so slowly, like licking yogurt and ice cream. Breads of different textures and flavors, crackers and chips as well. Just last week she licked ice cream. She used to love ice cream. I would buy the highest calorie ice cream I could find and add heavy cream! Now, she is licking it, so it's a start.
Today she smelled my turkey sandwich cooking in the oven. She asked if it was bacon, the only meat she would eat, but it had to be crispy! I told her no, but I think she wanted to try it for herself. Wet turkey with mayonnaise and sprinkled Parmesan. What a combination. I have no idea how she got up the courage to try it, but I'm so proud of her and glad she did. Then, to top it off and make my eyes blurry with tears... She wanted to try my tomato soup. This one, this idea, was incredible. Liquid food and big flavor, so very different for her palate. I was so impressed by her. I don't know how to express how hard it is having a child with multiple eating disorders to go outside of their safe zone. People don't understand a child who doesn't care for cookies, candy or cake. So I try to explain the best I can, what she's feeling inside. Because to me, she's so very strong. It takes a lot of strength to be starving but still refuse to eat. She's so resilient, she has been through so much pain with her open heart surgery, and is the happiest girl I know. The world has a lot of smells and tastes and I'm hoping she will slowly overcome her anxieties and use the courage that I know she has.
