Successful Treatment of Food Phobia
Sometimes our work brings tears to our eyes.
Today I discharged four year old Gabriel after one week’s intensive treatment for food phobia in Kartini Clinic's Food Phobia treatment program.
Jill, Gabriel’s mother, had a hard time finding us in the first place. Following a course of treatment for strep throat, her son had choked on an ice cream cone and thereafter refused to eat. No amount of talking, cajoling, bribing or insisting could induce him to eat or—eventually—drink. For a day and a half he literally ate nothing, until Jill discovered she could induce him to eat completely lump-free yogurt. She kept him alive on yogurt until she could find help.
Jill found us on the web in the early hours one morning and immediately called her mother to tell her the good news: “these people know what Gabriel has and have a treatment program for it!”
Despite the fact that Jill endured some skepticism on the part of concerned friends and family members, and hoping that we knew what we were doing, she took a leave of absence from work, bundled her son into the car and drove across the state to Portland.
Once in our program Gabriel required placement of a nasogastric (NG) tube to take control of his calories. As per our food phobia treatment protocol we began him on olanzepine (Zyprexa). For five days we offered no food and let his anxiety subside. At that point he had refused to let anything come near his mouth, including a toothbrush. His normally rambunctious, active boy behavior had become mistrustful, and he began hitting his mother as well as other people, screaming for them to go away.
Once the tube was safely in place he ignored it. No one spoke to him about food or asked him to eat. Gabriel played with his mother and other kids in the hospital for the better part of a week. Only then did our staff attempt to introduce solid foods. At first he was able to lick and taste a cookie, but no more. Over the weekend he asked for chewing gum and Gatorade and was able to tolerate both. Then his little brother, two years old, came to visit with Dad, and — wouldn't you know it — accidentally pulled out Gabriel’s feeding tube!
Gabriel cried bitterly as the nurses prepared to replace the tube. “I’ll try and eat!” he insisted. We decided to let him try. He was clearly anxious about the first bite of pizza, and had to chew it many, many times. When he took that first swallow his eyes got as big as saucers “I did it!” he cried. "I swallowed!”
In fact this episode neatly sums up our approach to treatment of food phobia in children: “bite, chew, swallow.” For kids with food phobia, anxiety around the act of eating is the primary problem. There is nothing wrong with their ability to swallow, but they are convinced they will choke if they do so. Rather than add to that anxiety, we take measures to lessen the emphasis on the act of eating (at first). The presence of the NG tube (to continue vital brain nutrition) allows us this luxury. Only once the anxiety is under control can re-feeding begin in earnest, step by step: bite, chew, swallow.
And while we don't usually do so, Gabriel's mother was so thrilled she asked us to share this treatment result with other families out there who may be looking for a food phobia program to help their child. It is with this hope that we present to you a brief video of a very happy little boy we like to call "Where are my cookies?" I hope you enjoy it as much as we did.
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Dr. O'Toole!! Words cannot even come close to expressing my appreciation. I am forever grateful for everything you did for my baby. I cry every time I read your blog about him, and I read it quite often. It's so accurate and I just haven’t been able to find the right words to thank you. This is why I haven’t commented until now. I hope you don't mind but I'd love to share my side just in case there is a parent reading this who may find themselves in my shoes...
Before I found Kartini Clinic I spent so many sleepless nights wondering why Gabriel was so afraid to eat. After the incident with the ice cream cone, he refused food entirely, saying it wouldn't go down his throat. I called his pediatrician's office and the nurse told me to “wait it out for another week.” I was so upset as I couldn't imagine standing by and watching my son starve for a week but I didn't feel that I had a choice. Thanks to my mom, we found out right away that he would eat yogurt with "no chunkies" in it so at least he was eating something. I felt so helpless watching my happy boy turn sad, anxious and withdrawn. He began wetting the bed which had a huge impact on his confidence level and I found myself up half the night just trying to console him. I was spending about $60.00 a week on yogurt trying to fill him up. He was starving and would eat about a pint of yogurt in one sitting, only to be hungry a couple of hours later. I carried a cooler stocked with yogurt when I knew we were going to be away from the house for long periods of time. Our world revolved around his anxiety and it took over our lives! I searched the internet every chance I got and found nothing. Then one night after I had spent an hour begging him to eat, Gabriel told me he hated me. Later I laid in bed next to him as he slept and cried. I prayed for him and asked God for help. Moments later I got on the internet and I found Dr. O'Toole! I called the clinic the next day and in about a week, we were on our way to Portland!
A lot of people thought I was crazy and I was even called a bad mom for taking him up there but I knew I was doing the right thing. People fear what they do not understand and as his mom, I was not willing to sit by and let this phobia hurt him any longer. I have no regrets and although it wasn't easy, I brought home a happy, healthy and grateful boy who is now happier than ever! He's up almost two pounds already and he eats even better than he did before he got sick. I am a single mom and it is just us at home. We have always had an incredible bond but somehow this experience brought us closer!! I've never seen Gabriel so happy and I owe it all to Dr. O'Toole!
We still talk about our experience in Portland and even though Gabriel was at times mean to the staff and bitter about being in the hospital, he doesn't talk about any of the stuff that upset him. He talks about being better and how Dr. O'Toole made him that way. We hardly ever talk about choking but he is careful to chew his food up before swallowing and he knows he must sit when he eats. I haven't seen even one sign of regression and as odd as it may sound, Gabriel even makes jokes about his NG tube. People warned me that putting him through treatment would "traumatize him" but they were wrong. He was already traumatized by that ice cream cone. NOT putting him through treatment would have only allowed that trauma to get worse. To anyone reading this who might be going through the same thing, please trust Dr. O'Toole and the staff at the Kartini Clinic!!!
Jennie, thank you for the birthday wishes for my little one and Gabriel and I send the same to your little one. Kudos to you for being so proactive and for not listening to anyone who had anything negative to say about your decision. You are a wonderful mommy!
Dr. O'Toole, you are an amazing woman! Thank you for everything you did for Gabriel and for everything you do for your patients everyday.
HI II AM A GRANDMOTHER OF A 10 YEAR OLD GRANDSON HE STOP EATING BACK IN JANURARY ALL HE DOES IS DRINK ENSURE AND PUDDING AND SOME CREAM PATATO WE ARE TIRING TO GET IN THE CLINIC RIGHT MY DAUGTHER IS ON MEDICADE SO MONEY WAS APROMBLEM BUT DOCTORS HERE KEPT TELLING HER HE WILL SNAP OUT OF IT BUT I TOLD HER TO CALL THIS PLACE AND I WOULD GET THE MONEY SOMEHOW SO ALL WE ARE DOING NOW WAITING ON ALL PAPER WORK TO GO THROUGH I HOPE VERY SOON I REALY WIIL BE GLAD WHEN HE STARTES TO EAT AGAIN I JUST HOPE THIS WORKS!!!!!!! AFTER EIGHTS MONTHS OF MY DAUGHTER CRING AND TAKING HIM TO SO MANY DOCTORS IT WILL BE NICE TO SEE HIM AND HER HAPPY AGAIN I JUST HOPE THAT THIS HAS NOT MESS HIS BOBY UP ON INSIDE THEY ARE NEEDING MORE PLACES FOR PHOIBA YOU DO NOT HERE OF THIS HAPPING AROUND HER AT ALL BUT REALY HAPPY IT WORK FOR THE LITTLE BOY I JUST HOPE IT WORKS FOR BRADLEY
We hope so too, but with a loving grandma also on the case, maybe we can climb even the tallest mountains!
Thank you for your kind words, Jill. But--it takes a team and it takes a parent!
Be sure and send us a school picture once in a while. On darker days around here we take out our pictures of the kids with food phobia and rejoice.
I am overcome with emotion watching little Gabriel and reading about his experience at the wonderful Kartini Clinic. My daughter was also treated for food phobia at the Kartini Clinic. This July 4th was a year from the time she choked and our journey began with food phobia. It took us 4 months to decide to pack up our family and drive to Portland from California hoping (and this was the hardest part, not knowing if it would work) that they would be able to help our little girl who at the time had recently turned 3. We too had been relying on smooth yogurt (Roxie called it "yogurt with no crumbs") to maintain her weight and even that was a huge struggle. It was the longest 4 months of our lives. We were told by medical professionals (many) that this was not a form of phobia but rather some kind of sensory issue. Not believing this I took to the internet and eventually found the Kartini Clinic. I (as her mom) had to learn to trust my gut about what was right for her. That meant leaving to venture to a place that the medical professionals here thought was not an appropriate treatment. We are thankful everyday for finding our way there. Roxie's treatment at the clinic lasted 3 weeks. Roxie exclaimed the same words as Gabiel "I did it! I swallowed it!". Those were amazing words to hear. She (at 3) could not really verbalize why were at the clinic. She would explain that she had "a boo boo in her nose" (referring to her feeding tube) when asked. To me, the fact that she knew that her first "bite, chew, swallow" was something to announce and be proud of spoke volumes. Roxie is now anxiously awaiting her 4th birthday coming soon. She is excited to have "little cakes" (cupcakes) at her party. We have been home from the Kartini Clinic for almost 8 months. Sometimes it seems like we just left (my anxiety has slowly gone away little by little) and sometimes it is hard to believe that it all even happened at all. We are fond of Portland for so many reasons but mostly because that is where we found the wonderful people who could "fix" what was all so suddenly "broken" last July 4th. Thank you all so much! And happy day to Gabriel and his family.
Roxie!
Happy (almost) birthday. We have never forgotten you.
Coming to Portland over the objections of the "professionals", who were themselves not able to help, was a brave move on Jennie's part. Let's hear it for a mother's intuition!
As the mother of G's BEST FRIEND, this story also brought me to tears. Matthew and I missed you both so much and we are absolutely elated that he is home and well and we would also like to say a BIG THANK YOU to all of the staff that helped to fix our best friend....
Matthew's Mommy
I think you can imagine how much it was our pleasure.
This story put tears in my eyes. Watching Gabriel go through this was heartbreaking. Now the tears are for joy. Thank all of you for what you do. God Bless.