Three reasons why some children (and adults) with thalassemia have a poor appetite

Josephine eating way too much food in her 20’s.

Josephine eating way too much food in her 20’s.

 
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Today's blog post is dedicated to a concerned mother who is worried about her young son's poor appetite. I receive this question quite often, so I'm going to do my best to share information that might help alleviate the situation.

The concerned mom writes:

"Hi Josephine,

It's so inspirational to see a website from a Thal major who herself is full of Soo much energy and optimism. I am from India and my son who turned 8 this year is a Thal major. I aspire someone like you to be my guide in bringing up my son and helping him grow into a tall and strong boy. At present I am most concerned about his height and weight. He has a very low appetite. How to improve that?

Best wishes,

M.”


Dear M,

Thank you for your question. There are many reasons why a child might be fussy when it comes time to eat. I can’t tell you how many of my grandmother’s stories end with “your uncle sat at the dinner table straight through to the morning, because I told him he couldn’t get up until he ate all his greens.”

But all jokes aside, if a child is dealing with an illness as severe as thalassemia, there are a few things to consider with regard to the way health affects poor appetite. This information holds true for adults with thalassemia major as well.

#1) Low hemoglobin contributes to poor appetite

First and most significantly, low hemoglobin is a major contributor to lack of appetite in both children and adults with thalassemia. 

According to the UCSF Benioff Standard of Care Clinical Practice Guidelines for thalassemia, low hemoglobin can be linked to poor appetite, failure to grow, and inability to maintain daily routines and activities such as going to school and work.

For this reason, clinicians who treat patients with thalassemia should have a goal of maintaining a pre-transfusion hemoglobin level between 9 and 10 g/dL (preferably 10 g/dL for growing children). My pediatric hematologist never let my hemoglobin fall below 10 g/dL, even if it meant returning for a transfusion each week (which was always the case before I had my spleen removed). 

I would suggest that all parents (and patients) become familiar with the standards of care for people diagnosed with thalassemia. Here are good options to learn from. This will help you learn which tests to ask for and what results to aim for in order to live healthier with thalassemia.

Based on my own experience, I can tell you that as my hemoglobin level drops (approximately three or four days before needing a transfusion), I have no desire to eat heavy meals. My diet consists of mostly vegetables, nuts, and legumes, so a heavy meal for me might consist of very dense foods that are high in fat and calories (e.g., a cashew or coconut sauce vegetable entree). 

As transfusion day grows closer, I eat less complicated meals that contain less protein, fat, and resistant starches since those nutrients can be difficult to breakdown and digest. For example, on most days I eat one half cup of oatmeal with a sliced fuji apple for breakfast. Two or three days before my transfusion, I’ll eat the apple with maybe a quarter cup of oatmeal or less, instead of my regular half cup. That's because oatmeal is a resistant starch that is metabolized slowly and can feel difficult to digest when my hemoglobin is low. If I get hungry later that same morning, I’ll eat another apple since it’s easy to digest. I also drink lots and lots of water to keep myself well hydrated between meals.

Most people are unconscious of how much energy is required to digest food, but when your blood count is low you feel every ounce of energy being used during every activity. Smoothies are a great meal alternative for this reason.

Consider how much energy is used by simply chewing and breaking down food in your stomach. It's easy to free up energy by blending fruits, vegetables, coconut water and protein powder into one smoothie to create a nutritious, fibrous meal that tastes good and is easier to digest than say, a bowl of chicken and rice.

If you’re concerned that your son is not consuming enough calories, smoothies also make it easier to consume more calories in one day. Adding about 500 extra calories each day for a week will allow about one pound of weight to get added to a person’s body.

If my smoothie contains frozen fruit I'll also drink warm herbal tea at the same time that I drink the smoothie. Eastern medicine believes that cold foods reduce stomach fire, so it's good to warm up the stomach when eating cold foods to enhance digestion.

Ask your son to choose his favorite fruits and vegetables and have him participate in the creation of his meals. I like combining raspberries, blueberries, banana and spinach together, but you can find other smoothie recipes online if you're interested in this idea. I’d definitely recommend searching to see which flavors might combine well and taste good together. 

#2) Trauma, depression, and anxiety contribute to poor appetite

Studies have shown that children diagnosed with failure to thrive (i.e., grow in height, weight, and head circumference) have parents who are characterized by their dissatisfaction with the child, have high levels of stress associated with the parenting role, and have low levels of child support from friends and family. (1) 

Specific to thalassemia, Mazzone, et al (2009) found that children diagnosed with transfusion dependent thalassemia often display increased anxiety, depression, and shyness and male patients, in particular, often display oppositional defiant disorder (which is a pattern of hostile, disobedient, and defiant behaviors directed at adults or other authority figures). (2)

Anyone who has ever felt deep sadness knows that it's very difficult to think about food in times of grief.

Those with anxiety have similar trouble because their sympathetic nervous system is so focused on fight/flight that it’s difficult to relax and feel hungry.

When I was a kid no one talked about me having thalassemia, but I knew it was a source of tension in my family. Fortunately, no matter how tough things got, my parents never focused on my hospital appointments or anything related to my medical needs. Transfusions and chelation were just things I had to do to keep living like everyone else. I never knew anything about what could possibly go wrong (and still do my best to avoid that information — though some people in the thalassemia community purely talk about the pain/fear, because that’s the space they live in).

My parents made sure I was active as a dancer and encouraged me to do well in school, but it wasn’t easy. I had an extremely difficult time in grade school, requiring special education and tutoring, beginning in elementary and ending in my first year of college.

The only reason I share these stories is because things may seem really difficult for your child right now, but persistence, positive encouragement, and positive reinforcement does pay off. 

Free! Supplement Guide + Stay In Touch

Learn which supplements are most important for people diagnosed with thalassemia minor or major. You'll also discover why certain supplements shouldn’t be taken together, what time of day to take supplements, which natural whole foods to eat instead of (or in addition to, if you're deficient) taking supplements, and more!

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If a parent expresses stress, sadness, anxiety or hostility about the child's illness, then the child's appetite and personality will become suppressed due to guilt, sadness, and anxiety at the thought of disappointing his or her parents.

In conclusion, psychological counseling for both parent and child is strongly recommended. This especially holds true for the primary caretaker who attends doctor appointments with the child, as well as the child.

#3) Oral chelators my cause digestive distress

Deferasirox, also known as Exjade, Jadenu, and Jadenu sprinkles have been shown to cause gastric ulcers in patients who use the drug. (34)

Similarly, Ferriprox, also known as L1, has been shown to cause gastrointestinal symptoms such as nausea, vomiting, and abdominal pain in patients taking the drug. (5)

Before assuming that a thalassemia patient doesn't want to eat because of his or her hemoglobin deficiency or emotional distress, one should also consider the possible side effects their chelation therapy.

Various oral chelators cause digestive distress, so speak to a pharmacist and/or medical doctor about your child’s symptoms and possible chelation options.

Remember, thalassemia is a very complicated disease that can result in a variety of secondary illnesses. Patients must be followed closely by medical experts who know the patient’s specific medication and transfusion regiments. Please use the information in this blog as a guidepost, but heed the recommendations made by your physician above all else.

I hope this information serves you well and helps you think about some aspects of thalassemia that you might not have considered before. 

If you have any extra thoughts or resonate with these ideas, please share them in the comments section below.

To everyone’s good health,

Josephine

Unlinked References: 
1) Iwaniec, D., & Sneddon, H. (2002). The Quality of Parenting of Individuals Who had Failed to Thrive as Children. The British Journal of Social Work, 32(3), 283-298. Retrieved from http://www.jstor.org.alumniproxy.library.nyu.edu/stable/23716801