Feeding Tube or Not?

December 22, 2017

As you know, many with Huntington Disease will in time, have trouble swallowing, followed by choking and aspiration. The tongue loses muscle control and can’t initiate the swallow reflex, and even if it can, it becomes very difficult to swallow. As the parent (or caregiver), you become concerned. In so many cases the patient with Huntington's is unable to eat as much, or they hold food in their mouth because they can’t swallow.  Inevitably,  they begin to lose weight at a rapid pace. 


In this article, I am reporting my experience, which can be very different from others.  The decisions we made followed much research.  Again please understand this is a personal choice that only you or your loved one can make. 


There are many adults with HD in later stages, and even young adults with Juvenile Huntington’s Disease that choose to forgo a feeding tube; they also have a DNR (Do Not Resuscitate) order. I completely respect and  understand that this is their wish.


There are many different variations,  stages,  and symptoms of HD and JHD. Many HD patients can no longer communicate their wishes and depend on a POA (Power of Attorney) to grant their wishes, which have been discussed in advance.  


In my case, My daughter just turned twenty-five. She has JHD (Juvenile Huntington’s Disease). I have chosen to write this article due to the need  for many to understand the pros and, yes, some cons. I will only speak from personal experience.


My daughter Erin has had a hard time eating for the last year. Even with soft foods or puree, sometimes it was fine, but other times she just could not swallow.  In result, she would spit out her food. The tongue has to be able to bring the food back to initiate the swallow, and in HD and JHD this does not always happen. Erin would choke on certain foods, especially vitamins and medications. Some of these pills can be too large to swallow.  She would tell me she was full, after a few bites of food, although I knew she was not.  I took the time to talk to her to find out why she was not eating.  Of course, her answer was that she is scared of choking! 


It is a horrible feeling for the patient to choke and not being able to breath. As the caregiver, it is frightening to do the Heimlich Maneuver to release what they are choking on, and get air into their airway.  


So I had to make adjustments.  I thickened her drinks, and I make sure she is upright when eating. Erin has a tendency  to slide down in her chair. This happens with many patients with HD and JHD.  A recommendation I have is to put pillows behind them to keep them upright while eating. In my opinion, if coughing starts, raise their arms, and encourage coughing. I changed her diet to a soft diet: scrambled eggs, mashed potatoes, mashed food, milkshakes, ensure, applesauce, and ice cream.  Some tips: Be careful of Peas, as skins can make them choke. Be careful of mixing liquids with food, such as cereal.  Always eat and then drink!


The biggest concern is the high caloric intake needed for HD and JHD patients, to sustain their weight. This is especially important for patients who have chorea.  As the progression of the disease happens, it is very difficult for the patient to eat. This directly affects the amount of calories they intake, and weight loss begins.