Bean's Medical Fund
Donation protected
Hi, my name is Melissa and this page is for “Bean”. Bean is my daughter, Lillie, and she is 9 years old. She is an AMAZING young lady and I could tell you story after story about her love and compassion for all living things, but we’ll save that for another day. This page is about Bean's medical disorder, to raise funds for her medical treatment, and to raise awareness of the disorder to the general public. She has ARFID: Avoidant/Restrictive Food Intake Disorder. ARFID is classified as a type of eating disorder, except, unlike most eating disorders, it has nothing to do with body image. She does not think she is fat. Honestly, she doesn't care how much she weighs. I’d like to tell you a little about ARFID, but first about Bean.
I’m not going to drag you through every single detail of her treatment and therapy, but it is safe to say we have exhausted our options for her in South Carolina.
This is where our story begins:
3 Months Old - We began TRYING to introduce rice cereal into Bean’s diet. She cried, spit, gagged, tried to remove the food from her mouth and sometimes vomited. After several failed attempts, I called her pediatrician for advice. He encouraged us to keep trying, but if still unsuccessful add a little pureed fruit. She eventually accepted the cereal/fruit mixture and “enjoyed” - more like tolerated - it. Even after making some progress, I still had this nagging feeling that something still wasn’t quite right. She continued eating baby food with no issues until Stage 3… the dreaded “chunks”. Needless to say, Stage 3 did not go well. It was “rice cereal” all over again; spitting, crying, gagging and vomiting. She also tried a few snacks and finger foods around this time but they were things like crackers, cookies and French fries - nothing nutritious. She continued to drink formula, eat Stage 1 & 2 baby foods and “snacks” (AKA processed junk food).
18 Months Old – Bean’s pediatrician finally agreed to refer her out to a specialist. This is where our long journey for answers finally began… Our first referral was to a Nutritionist and Dietician. First, we started trying to get proper nutrients in her system. We fortified milk, drank Pediasure, and took lots of vitamins. Then they instructed us to “help her get hungry enough to eat.” …Yes you read that correctly. I was told to offer her new foods and if she wouldn’t eat them, then she didn’t eat. The theory was she would get hungry enough to eat and everything would “click”. My baby would NOT eat and anyone could tell she was hungry. Per doctor’s instructions, she did not eat much of anything for about 2 weeks except a protein bar and a cup of milk at night before bed due to her restrictiveness. We gave up on that theory. Have you ever intentionally made your baby hungry and not give her things to eat when you knew she was hungry? It. Is. Hard. After months with no success, we were referred out to a speech therapist. After several more months of no success, we were referred to an occupational therapist. By this time, we were thousands and thousands of dollars in debt with no progress. We were actually regressing in therapy. She was eating less than ever before. No formula, baby foods, or vitamins. That’s a HUGE deal! That basically translates into no nutrients. From this point on it was consistent junk food. We continued therapy and eventually changed to a different pediatric therapy group that we had heard great things about. By word of mouth, we found out that this facility had experience with situations similar to ours and had been successful with many children…
5 Years Old - A few years and several thousand dollars later, Bean was discharged as MMI. MMI means “Met Maximum Improvement” i.e.: they have done all they can do to help. With no other tangible options, and years and YEARS of pressure, we decided to give her a break from therapy. She was getting ready to start kindergarten the following month and we desperately hoped being around other children (especially in the cafeteria) would help something “click” for her. We were wrong. We have changed pediatricians, gone to specialists, seen a wide variety of therapists, tried medication, chiropractic, holistic healthcare, essential oils, and energy medicine. Some of which is “unconventional” but still… Nothing worked. Every specialist thinks something different but eventually come to the same conclusions: “She’ll grow out of it. She’s just a picky eater.” or “Don’t worry, she’ll get hungry enough to eat.”
FYI: That is not the case with ARFID.
So here we are:
Bean will be 10 soon and eats less than she ever has before. We recently heard about a facility that could possibly help her, and went for an assessment. After speaking with their clinician, and getting a diagnosis of ARFID, we found out Bean needs an intensive therapy program that will require partial hospitalization or residential care. This will be an expensive venture, but it must be done. They have advised us that if we do not find adequate treatment, her ARFID will only get worse.
We have already seen it getting worse over the years.
Some children eventually end up with a feeding tube, many children already have one. This is a life threatening disease and no one wants to watch their child slowly decline. We are strong, but that is a road we don’t want to go down.
Currently, we are looking into a very short list of facilities that treat ARFID. Due to Bean’s age and the fact that her ARFID is sensory related, that list is even shorter. We have found one possibility in Colorado but two things stand in our way: insurance and finances. We have just found out that our insurance offers NO COVERAGE for childhood eating disorders and her treatment could range between $50,000 -$100,000, with a down payment of $30,000 due at admission. We also have travel and lodging to add to the equation. I have spoken to someone at the Ronald McDonald House, and lodging is no longer a concern. We can handle the travel end of the equation, but it’s the $50,000 - $100,000 that stands in our way.
Thank you for taking the time to read Bean’s story and please consider donating to her cause. We do not yet know how treatment is going to happen but it is a must – anything you give will go towards making it happen.
Here are some links with additional information about ARFID and just a few highlights from my research.
· http://eatingdisorder.org/blog/2013/08/what-is-arfid/
· http://eatingdisordersreview.com/nl/nl_edr_24_3_1.html
· http://www.mirror-mirror.org/arfid.htm
Symptoms of ARFID:
· Persistent pattern of disordered eating or feeding characterized by:
o Lack of interest in food or poor appetite.
o Fears about negative consequences of eating (e.g., vomiting, choking, allergic reaction).
o Selective or picky eating.
· The pattern of disordered eating is also accompanied by at least one of the following:
o Significant weight loss or failure to gain weight/grow as expected.
o Nutritional deficiency (e.g., anemia).
o Dependence on nutritional supplements or tube feeding.
o Impairment in psychosocial functioning.
It is important to note:
· Disordered eating is not due to cultural practice or lack of available resources
· No significant body image distortion or fear of weight gain
Warning Signs
· Restricted or reduced intake accompanied by frequent somatic (i.e., pertaining to bodily symptoms and discomfort) complaints with no organic cause.
· Lack of appetite or interest in food.
· Expressed fears of choking or vomiting associated with reduced intake or refusal to eat meals or snacks.
· Inability or reluctance to eat in front of others (e.g., at school, at a friend’s house, in a restaurant).
· Picky eating that is unresolved by late childhood.
· Limited range of preferred foods that becomes narrower over time (i.e., picky eating that progressively worsens).
Health Consequences
· Increased risk for Failure to Thrive (not meeting expected standards of growth) due to inadequate nutritional intake. Many individuals with ARFID have stunted growth or have fallen off their growth curves for weight and height.
· Nutritional deficiencies (e.g., anemia or iron deficiency) and malnutrition which may be characterized by fatigue, weakness, brittle nails, dry hair/hair loss, difficulty concentrating, and reduction in bone density.
· Weight loss or severe underweight.
Facts and Statistics:
· ARFID is the second most common eating disorder in children 12 years and younger.
· Prevalence rates for ARFID range from 8% to 14% in an eating disorder treatment setting.
· ARFID is more common in children and young adolescents and less common in late adolescence and adulthood.
· ARFID is often associated with psychiatric co-morbidity, especially with anxious and obsessive compulsive features.
· ARFID is more than just “picky eating”; children do not grow out of it and often become malnourished because of the limited variety of foods they will eat.
· The true prevalence of ARFID is still being studied, but preliminary estimates suggest it may affect as many as 5% of children.
· Boys may have a higher risk for ARFID than girls.
· 63% of pediatricians and pediatric subspecialists were unfamiliar with the diagnosis of ARFID.
***PLEASE READ ALL UPDATES AS SOME THINGS HAVE CHANGED SINCE THIS CAMPAIGN WAS ORIGINALLY STARTED, THANK YOU.***
I’m not going to drag you through every single detail of her treatment and therapy, but it is safe to say we have exhausted our options for her in South Carolina.
This is where our story begins:
3 Months Old - We began TRYING to introduce rice cereal into Bean’s diet. She cried, spit, gagged, tried to remove the food from her mouth and sometimes vomited. After several failed attempts, I called her pediatrician for advice. He encouraged us to keep trying, but if still unsuccessful add a little pureed fruit. She eventually accepted the cereal/fruit mixture and “enjoyed” - more like tolerated - it. Even after making some progress, I still had this nagging feeling that something still wasn’t quite right. She continued eating baby food with no issues until Stage 3… the dreaded “chunks”. Needless to say, Stage 3 did not go well. It was “rice cereal” all over again; spitting, crying, gagging and vomiting. She also tried a few snacks and finger foods around this time but they were things like crackers, cookies and French fries - nothing nutritious. She continued to drink formula, eat Stage 1 & 2 baby foods and “snacks” (AKA processed junk food).
18 Months Old – Bean’s pediatrician finally agreed to refer her out to a specialist. This is where our long journey for answers finally began… Our first referral was to a Nutritionist and Dietician. First, we started trying to get proper nutrients in her system. We fortified milk, drank Pediasure, and took lots of vitamins. Then they instructed us to “help her get hungry enough to eat.” …Yes you read that correctly. I was told to offer her new foods and if she wouldn’t eat them, then she didn’t eat. The theory was she would get hungry enough to eat and everything would “click”. My baby would NOT eat and anyone could tell she was hungry. Per doctor’s instructions, she did not eat much of anything for about 2 weeks except a protein bar and a cup of milk at night before bed due to her restrictiveness. We gave up on that theory. Have you ever intentionally made your baby hungry and not give her things to eat when you knew she was hungry? It. Is. Hard. After months with no success, we were referred out to a speech therapist. After several more months of no success, we were referred to an occupational therapist. By this time, we were thousands and thousands of dollars in debt with no progress. We were actually regressing in therapy. She was eating less than ever before. No formula, baby foods, or vitamins. That’s a HUGE deal! That basically translates into no nutrients. From this point on it was consistent junk food. We continued therapy and eventually changed to a different pediatric therapy group that we had heard great things about. By word of mouth, we found out that this facility had experience with situations similar to ours and had been successful with many children…
5 Years Old - A few years and several thousand dollars later, Bean was discharged as MMI. MMI means “Met Maximum Improvement” i.e.: they have done all they can do to help. With no other tangible options, and years and YEARS of pressure, we decided to give her a break from therapy. She was getting ready to start kindergarten the following month and we desperately hoped being around other children (especially in the cafeteria) would help something “click” for her. We were wrong. We have changed pediatricians, gone to specialists, seen a wide variety of therapists, tried medication, chiropractic, holistic healthcare, essential oils, and energy medicine. Some of which is “unconventional” but still… Nothing worked. Every specialist thinks something different but eventually come to the same conclusions: “She’ll grow out of it. She’s just a picky eater.” or “Don’t worry, she’ll get hungry enough to eat.”
FYI: That is not the case with ARFID.
So here we are:
Bean will be 10 soon and eats less than she ever has before. We recently heard about a facility that could possibly help her, and went for an assessment. After speaking with their clinician, and getting a diagnosis of ARFID, we found out Bean needs an intensive therapy program that will require partial hospitalization or residential care. This will be an expensive venture, but it must be done. They have advised us that if we do not find adequate treatment, her ARFID will only get worse.
We have already seen it getting worse over the years.
Some children eventually end up with a feeding tube, many children already have one. This is a life threatening disease and no one wants to watch their child slowly decline. We are strong, but that is a road we don’t want to go down.
Currently, we are looking into a very short list of facilities that treat ARFID. Due to Bean’s age and the fact that her ARFID is sensory related, that list is even shorter. We have found one possibility in Colorado but two things stand in our way: insurance and finances. We have just found out that our insurance offers NO COVERAGE for childhood eating disorders and her treatment could range between $50,000 -$100,000, with a down payment of $30,000 due at admission. We also have travel and lodging to add to the equation. I have spoken to someone at the Ronald McDonald House, and lodging is no longer a concern. We can handle the travel end of the equation, but it’s the $50,000 - $100,000 that stands in our way.
Thank you for taking the time to read Bean’s story and please consider donating to her cause. We do not yet know how treatment is going to happen but it is a must – anything you give will go towards making it happen.
Here are some links with additional information about ARFID and just a few highlights from my research.
· http://eatingdisorder.org/blog/2013/08/what-is-arfid/
· http://eatingdisordersreview.com/nl/nl_edr_24_3_1.html
· http://www.mirror-mirror.org/arfid.htm
Symptoms of ARFID:
· Persistent pattern of disordered eating or feeding characterized by:
o Lack of interest in food or poor appetite.
o Fears about negative consequences of eating (e.g., vomiting, choking, allergic reaction).
o Selective or picky eating.
· The pattern of disordered eating is also accompanied by at least one of the following:
o Significant weight loss or failure to gain weight/grow as expected.
o Nutritional deficiency (e.g., anemia).
o Dependence on nutritional supplements or tube feeding.
o Impairment in psychosocial functioning.
It is important to note:
· Disordered eating is not due to cultural practice or lack of available resources
· No significant body image distortion or fear of weight gain
Warning Signs
· Restricted or reduced intake accompanied by frequent somatic (i.e., pertaining to bodily symptoms and discomfort) complaints with no organic cause.
· Lack of appetite or interest in food.
· Expressed fears of choking or vomiting associated with reduced intake or refusal to eat meals or snacks.
· Inability or reluctance to eat in front of others (e.g., at school, at a friend’s house, in a restaurant).
· Picky eating that is unresolved by late childhood.
· Limited range of preferred foods that becomes narrower over time (i.e., picky eating that progressively worsens).
Health Consequences
· Increased risk for Failure to Thrive (not meeting expected standards of growth) due to inadequate nutritional intake. Many individuals with ARFID have stunted growth or have fallen off their growth curves for weight and height.
· Nutritional deficiencies (e.g., anemia or iron deficiency) and malnutrition which may be characterized by fatigue, weakness, brittle nails, dry hair/hair loss, difficulty concentrating, and reduction in bone density.
· Weight loss or severe underweight.
Facts and Statistics:
· ARFID is the second most common eating disorder in children 12 years and younger.
· Prevalence rates for ARFID range from 8% to 14% in an eating disorder treatment setting.
· ARFID is more common in children and young adolescents and less common in late adolescence and adulthood.
· ARFID is often associated with psychiatric co-morbidity, especially with anxious and obsessive compulsive features.
· ARFID is more than just “picky eating”; children do not grow out of it and often become malnourished because of the limited variety of foods they will eat.
· The true prevalence of ARFID is still being studied, but preliminary estimates suggest it may affect as many as 5% of children.
· Boys may have a higher risk for ARFID than girls.
· 63% of pediatricians and pediatric subspecialists were unfamiliar with the diagnosis of ARFID.
***PLEASE READ ALL UPDATES AS SOME THINGS HAVE CHANGED SINCE THIS CAMPAIGN WAS ORIGINALLY STARTED, THANK YOU.***
Organizer
Melissa Lane Hancock
Organizer
Spartanburg, SC