Feeding Tube~Jean Miller
Movement Disorder Medicines
Anxiety-Antidepressant Medications
Antidepressant Adverse Effects
Warnings~Adolescents Under 25
Sertraline ~Zoloft
Anti-psychotic Medications
Prozac, Luvox, Paxil, Zoloft & Celexa
Olanzipine & Risperidone and blood tests
Cutting Prescriptions
Sites That Help the Medicine Go Down
Vitamins & Minerals
Why Certain Symptoms Occur In HD
Tests Commonly Used -Neuropsychological Examination
Symptom vs Medication
Speech & Swallowing Difficulties~Lynn Rhodes
Swallowing Problem Warning Signs
Swallowing Tests
Nutrition and HD~Anna Gaba (Recipes)
HD & Diet~HSA Fact Sheet 7
HD~Swallowing & Nutrition
Weight Gain
5 Levels Difficulty In Swallowing
Feeding Tube~Advanced Stages of HD
Feeding Tube~Jean Miller
One more word on feeding tubes
PEG Tubes and baby foods
Feeding Tubes-More Info
HD~Falling/Safety Issues
HD~Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Denial of HD
HD~Irritability/Temper Outbursts
Managing behavioral problems
Depression - Treatment Resistant Patient
HD~Mania, Obsessive Disorders
HD~Hallucinations & Psychosis
HD~Rigidity, Spasticity, and Dystonia
Adaptive Products
Teen Suicide~Let's Talk Facts
Stress Explained-Easy/Fun Format
How To Help Someone Chronically Ill
Legal Planning for Incapacity
Out-of-Home Care Options FAQ
Preparing for Emergencies
The following is a message I posted on Hunt-Dis over a debate on getting a feeding tube or not:

The decision for a feeding tube is a very personal one.  In my experience with Kelly, and in hundreds of personal contacts with people from around the world since my first article on our experience appeared on the web,  this decision is still one of the hardest a family faces and usually is a cause of emotional trauma for the family.

Yes;  this should be discussed early and a person's wishes included in their Advanced Directive. 
Yes;  if given the opportunity to change their mind many people, especially
those younger and still fairly healthy, DO opt for a feeding tube.  The wishes of those who have not changed their decision should be honored.  
Yes;  some studies have shown that elderly people with SEVERE dementia do not benefit from a tube.  And the list goes on and on.

Below are the articles I wrote for when a decision to have a tube placed has been made, plus several  additional links for information on feeding tubes.  I am sure there are a ton more I haven't been to yet.

Every family living with HD should be aware of the early signs of experiencing  GERD or  problems with swallowing/choking and seek immediate attention as avoiding these signs will led  to more serious complications.  GERD (refluxes) in particular since the stomach  acids cause ulcers of the esophagus which is very painful and makes oral eating more difficult.
Swallowing therapy and other aids in eating guidelines are very helpful in
prolonging someone's ability to eat.


Feeding Tube

By Jean Miller 

My daughter, Kelly, had Juvenile Huntington's Disease.

I would only advocate the use of a feeding tube when the patient is no longer able to ingest sufficient calories and/or liquids to sustain life. This should be considered in conjunction with a swallowing study on the patient which is performed by X-Ray technicians by video taping the patient swallowing various consistencies of liquids/foods. In advanced stages of HD it is possible for the patient's throat/muscle control over swallowing to become impaired and can, in some instances, cause liquids to enter into the lungs instead of the stomach, thereby increasing the risk of pneumonia.

Kelly had a swallowing study performed in October, 1995, which showed that the little flap over the windpipe was not performing normally. This was performed because Kelly had her first instance of pneumonia. This test reflected that her gag reflexes were impaired, allowing liquids to enter into her lungs. Her physician, at that time, insisted on installing a feeding tube in Kelly. This came somewhat as a shock to both Kelly and I and we informed the physician we would not allow this surgery without fully comprehending its consequences.

The hospital adminstration sent a technician experienced in feeding tubes to explain the various types of feeding tubes to Kelly and I. Afterwards, Kelly was adament in not wanting a feeding tube installed. Her decision was based purely on (a) refusal to allow HD to claim another area of control over her body and (b) cosmetic/appearance reasons.

From this point on Kelly could no longer have thin liquids. Everything was thickened with Thick-It, an outrageously expensive cornstarch based commercial thickening. Foods were coursely chopped and those of a drier consistency were covered with thicker gravies. Kelly did fine on these foods until a CNA gave her unthickened milk in January, 1996. (Everyone was instructed not to give Kelly anything not prepared by me but this temporary lady conceded to Kelly's pleas for a glass of milk.) Milk has the highest bacteria rate and, when ingested into the lungs, caused pneumonia. Within 24 hours Kelly was back in the hospital with pneumonia. Again, her doctor suggested a feeding tube, but Kelly still refused it.

It became increasingly difficult for Kelly to swallow and meal times took an average of 1 to 2 hours. Kelly's appetite remained good. However the effort involved with eating consumed a tremendous amount of her engery. I changed her eating patterns to smaller meals - over 6 times a day. Shortly after her hospitalization in January, Kelly began to have more problems with mucus and/or thickened liquids remaining in her throat, especially when she was tired. At those times I had to suction liquids from her throat several times a day.

From mid-June until early August, Kelly began a series of high, unexplained, fevers (103 to 105) which burned up the little fluids that she was consuming. She became so weakened from the lack of fluids and calories that she almost died. A normal, healthy body will die within 14 days from the lack of liquids and food. The Choice In Dying booklet on feeding tubes indicates that someone with a serious illness can succumb sooner than that. The doctors said Kelly should have died. She agreed to have a feeding tube placed.

The new doctor we have said that Kelly should have had a swallowing test performed every 3 months as a precaution to determine if her swallowing had deteriorated further. Another test was done in August which, ironically, showed Kelly could swallow thin liquids. However, her overall swallowing capacity had greatly diminished since the previous October. She could no longer ingest sufficient amounts of fluids and/or calories to sustain life.

Kelly currently is consuming 64.5 ounces of Jevity which is equivalent to Ensure. It is a liquid nutrition with fiber contents. This equates to approximately 2000 calories a day. This is supplemented with some foods like pudding, mashed white/sweet potatoes etc., against the doctor's orders to wait 2 months when Kelly is not having trouble swallowing.

For patients who tire from the efforts to chew and swallow food and/or the caregivers who spend an excessive amount of time feeding the patient, tube feeding can give you some free time to just sit with one another. In our case, the feeding tube has saved Kelly's life and has significantly improved her quality of life in that her body is getting the proper nutrition/fluids which she herself could not consume.

A feeding tube should be suggested by the physician after swallowing tests have determined the HD patient can no longer eat sufficiently to maintain their body. Then it is the patient/caregiver's responsibility to make the determination whether or not they want to have this procedure done in order to maintain life.

The following will, hopefully, provide some information on the feeding tube obtained from our recent research and actual experience of having one inserted in Kelly 8/14/96. The technical words are taken from literature we received. This is a personal decision to be made by the patient or their caregiver based on their knowledge of the patient's wishes, if the patient is not capable of deciding, in concert with the recommendations by their physician.


Percutaneous Endoscopic Gastrostomy (PEG) is a tube which is inserted into the stomach with the aid of an endoscope. The PEG tube is brought outside the body through a small incision in the abdominal wall (approximately between the lower ribs) and secured with a crossbar called a bolster. The patient's daily caloric, fluid and electrolyte needs are provided by the administration of formula or blenderized food through the PEG tube.

A PEG is used in long term feeding. There are other, temporary, feeding tubes which are inserted through the mouth which normally wouldn't be applicable to HD therefore I am not addressing those. A PEG tube, which has about a 3 inch tube protruding from the incision area, can be concealed by clothing but is a little "snaky" since it's a tube. There is a "button" tube which can be installed a couple of weeks after the surgery. Kelly will get this. It is supposedly flush to the body.

There is a dual port feeding adapter on one end of the tube, then an inch or so of traction removal area, then 15 cm. of tube with markings and a 1 piece external bolster (crossbar) located on the gastrostomy tube that prevents movement of the tube by the incision. Inside the stomach wall there is 3 cm. of tube, then the silicone dome. The booklet doesn't describe the dome but it is supposedly like a balloon to prevent the tube from popping out of the stomach wall. I understand there is a feeder from the tube off that which actually allows the food to enter the stomach.


The incision is a little larger than the tube inserted. If the tube is accidently pulled out you must have it reinstated within 24 hours or the incision will heal, necessitating new surgery.


The surgery takes approximately 20 minutes and the patient is kept awake but is given a drug which acts like ammesia where they do not remember the procedure. The risk is minimal but has a higher risk in obsese people which Huntington patients do not need to worry about! The patient is observed in a recovery area for about an hour, then moved to their hospital room. Depending on their level of health prior to having the PEG installed, their stay could be 1 to 2 days for observation of acceptance of the feedings. There may be some discomfort from gas/air or adjusting to the liquid foods.


Cleaning: The first week there is more care than afterwards since surgery has been performed. Sterile gloves, gauze etc., must be used to clean the area thoroughly around the wound. The nurses and doctor will instruct you in this procedure and give you a booklet to take home with you. The incision will heal but, of course, remains open since the tube is through it. Afterwards the area should be cleaned daily and covered with a clean gauze.

Leakage: Occasionally the tube may pull away from the abdominal wall resulting in leakage around the insertion site. It may also occur if the stoma site (incision) enlarges in the patient with poor nutrition. In addition, excessive tension on the tube may cause the tube to be pulled out prematurely. The tube is marked where it should be level with the incision and should be checked daily to make sure it hasn't moved. If it does move, call you physician and they will advise you how to return the tube to its original position.

Wound Infection: Purulent drainage (pus) around the tube is commonly seen but does not always represent a true infection. It may be the body's reaction to a foreign object. Clean the insertion site several times a day. Avoid using occlusive dressings (something which would obstruct the normal functions or inhibit healing), as they can promote infection. If the conditions persists, notify the doctor immediately.


Do not place excessive tension on the tube or pressure necrosis (death of an area of tissue) of the interior abdominal wall might occur. If skin irritation or excoriation (abrasion of the outer skin by trauma, chemicals, burns) is seen at the incision site apply a skin barrier for protection via a prescription.


Prior to each feeding the tube must be checked for (1) patency (being free to move/you should move the bolster each time), (2) the gastric contents measured and the (3) markings (cm) on the tube to make sure it hasn't moved.
Item (2) means that the contents of the stomach need to be withdrawn with a hand syringe to measure the residual to make sure the patient is absorbing the food properly. The doctor will tell you the level he feels is appropriate for each patient. But as a rule under 150 cc's is acceptable. Anything over, you withhold feeding until the level goes down.


You must be certain to reinstall the withdrawn gastric (stomach fluid) contents to prevent loss of nutrients and electrolytes.


The patient should be fed in an upright position (at least 30 degrees) and remain in an upright position for 30 to 60 minutes following the feeding. This minimizes the possibility of aspiration (inaling food into the lungs) and its inherent complications (pneumonia).


Cleanliness: Thoroughly wash hands with soap and water before preparing formula/food and having contact with the patient.

Food Handling: Formula should be given at room temperature (too hot or cold would make patient uncomfortable). Unused formula and blenderized foods should be refrigerated. Refrigerated formula and blenderized food should be warmed to room temperature over a 30 minute period before feeding. NEVER heat the solution as this could increase the growth of bacteria.

Bolous Feeding: Never FORCE fluids through the PEG tube, if bolous feeding (where the food is poured into the tube slowly verses by machine). Bolous feeding allows for rapid feeding of formula over a relatively short period of time. Formula may be instilled using a bulbed or piston syringe or through the use of gravity flow. The feeding usually consists of no more than 250 cc's to 500 cc's per feeding and is given to the patient every 4 to 6 hours.

Infuse the formula slowly and carefully to prevent abdominal cramping, nausea and vomiting, gastric distension (inflated stomach) or diarrhea. If the formula is not infused (poured) slowly, the patient is placed at a high risk for aspiration (fluid into the lungs) and the complications of pneumonia.

Continuous Feeding: This method is preferable in many patients. The feeding pump (a machine) is set up and the tubing connected to the PEG tube. The formula is infused over the prescribed period of time into the patient. The risk for aspiration is decreased because less formula is given during the prolonged period of infusion.

Symptons of dumping (a syndrome characterized by seating and weakness after infusion of nutrition) may occur. Such symptons include weakness, cramping, lightheadedness, diaphoresis (profuse sweating) or tachycardia (abnormal rapid heartbeat). Should any of this symptons appear the feeding should be STOPPED and the physician called IMMEDIATELY.

Summary bolous/continuous: The bolous allows you more freedom in that you can give feedings anywhere which is nice when you leave the house. Kelly experienced some stomach discomfort with bolous but I try to switch back and forth so when I can take her out we can still feed her. I had a dear friend's sister die last year from cancer and she had a feeding tube for a year. She would whip it out in a restaurant when other's food arrived and pour her Ensure down the tube so she could "eat " with everyone else! It shouldn't be anything to be embarrased about, after all it's sustaining your quality of life!!


Medications may be administered through the PEG tube utilizing the bolus feeding method. The physician or pharmacist should be asked for liquid medication where possible verses pills or capsules. If liquid medication isn't possible, certain tablets and pills may be dissolved in 30cc to 50cc's of water.

Formula, juice or milk may be used if the medication does not dissolve in water. Highly viscous liquids (sticky, gummy, gelatinous liquid like CO-Q10) should be diluted with water prior to administration.

It is recommended that a physician or pharmacist be consulted for questions regarding medications and/or the administration of medications, as certain medications should NOT be crushed or dissolved.

Following the administration of any medication, the tube must be flushed with 30cc to 50cc of water.

DO NOT give bulk laxatives through the tube without consulting with the physician first as some laxatives may obstruct the PEG tube. (NOTE: So will undissolved tablets. The hospice nurse "dissolved" an aspirin for Kelly in my absence and placed it down her tube. Later, the tube was clogged with most of the aspirin blocking entry into the stomach. I use a very fine sieve to strain the diluted medication through several times before giving it in the tube.)


This is most often caused by the build up of formula residual in the lumen (internal space or opening that exists within the gastrostomy tube). Tube blockage may be prevented with the routine practice of flushing the tube after each use.
If blockage occurs the tube should be irrigated using a large bulbed syringe. Be careful to avoid excesive force while irrigating because the tube could rupture. Milking the tube may help dislodge the obstruction. Should these attempts to remove the obstruction fail, notify the physician IMMEDIATELY.

(NOTE: I find that continuous feeding tends to leave residual in the tubes since it feeds over a 7 hour period and needs "milking" to get the tube cleaned after the feeding is done.)


The care of the tube and the feeding sound like a lot of work, but it really isn't. At first you swear you will never remember all of the steps necessary for each procedure!! I took notes and still forgot so I developed a form (in Word 5.1) which I used for the first week and now do it from memory. I'm including the form, below, which you can modify to your use.

Good mouth care is imperative in preventing problems, especially with patients who are provided with total nutritional support through the PEG tube.
Daily brushing of the patient's teeth, gums and tongue should be done. Mouthwash may be used with patients who retain a gag reflex.
The patient's lips should be moistened with water and, if necessary, lubricated with petroleum jelly to prevent cracking. (NOTE: Lips do dry out. Kelly's began cracking and bleeding so I rub petroluem jelly on them a couple of times a day.)


To prevent the inadvertent inhalation of formula the patient should be fed in an erect or semi erect position (at least 30 degrees) and remain in that position for 30-40 minutes after feeding. (NOTE: If you are on continuous feed you will be in that position almost all the time if bedridden.)
Overdistention (where the abdomen becomes superinflated) should be avoided by careful attention to the rate of feeding flow and the development of abdominal bloating. (NOTE: The doctor will recommend the measurement of feeding and the flow to be used.)


Should the patient experience bloating prior to or following any feeding, the patient's stomach and intestinal tract should be decompressed.
Decompression is easily accomplished by removing the feeding adapter cap (from the tube) and allowing the PEG tube to be open to air.
Encouraging the patient to cough will expedite the removal of excessive air. (NOTE: I would encourage you to put the bolous tube into the PEG first!! When Kelly cough's or burps, the contents come splattering out all over!! We laugh over listening to the gas come out of the bolous tube, making gurgling sounds!)


Commerical food: The formula comes commercially prepared or in powder form. Powdered form requires dilution with water. The physician will advise the patient/family on the type of food, methods of feeding, frequency/rates and administration/care of the tube. These can be ENSURE, JEVITY, etc. with or without fibers.
Most 8 oz. cans contain 250 calories and with continuous feeding (via machine timing) Kelly consumes 16 cans within 24 hours which is 2000 calories. I am concerned that when you add the percent of daily vitamin/minerals given totally throughout the day, some exceed the recommended daily amounts (RID's on can). Also, according to an article in the St. Petersburg Times this week it says fiber is used for dieting since it passes the nutrients and fat through your body quickly to avoid caloric intact. That seems defeative for HD. Kelly is on Jevity with fiber and I want to discuss this with the doctor.

Table Food: Table foods may be blenderized according to instructions from the physician. Kelly's tube is the size of a regular straw in diameter. Therefore food would have to be liquidized and we would risk clogging the tube. Due to her swallowing disorder, the doctors did not want her to consume solid foods for at least 2 months. I'm giving Kelly puddings, sweat potatoes, etc. to supplement the tube feeding since she still gets hungry.


Kelly's physical health has improved tremendously with the feeding tube. When it becomes too laborous for a person with HD to consume sufficient amounts of calories and/or fluids to maintain a healthy body then a tube should be considered, especially if their mental/cognitive skills enable them to be consciously aware that this is causing them a problem.

There is, somewhat, a stigma with "others" in that when you say your loved one had a feeding tube inserted you'll get "ohs and ahs and how sorry they are for you/them" which is quickly addressed by advising them that without it your loved one wouldn't be there! Some may even get embarrassed watching you feed yourself. Just remember, that's their problem. Your goal is to sustain your quality of life until they find a cure for Huntington's!

There isn't much information, that I could find, on the web on feeding tubes which can provide insight to someone having to make such a decision. Most either simplify it too much or discourage its usage.

It should be a personal choice, heavily influenced by the patient's quality of life. Like any decision, though, it should be informed in that you know all the pros and cons. If the patient no longer has a will to live compounded by overwhelming physical deterioration, then the choice to die a peaceful death can be honored by not providing fluids or nutrients through a tube. Everything I've read, plus the nursing profession I've queried on this, have agreed that it is a very painless choice in dying.

Kelly is a very strong willed individual. However, I know there are times I can influence her because she does respect my opinion. When she almost died last month I can tell you, from that experience, that she was not in any pain but was just slowly slipping away. The doctors did not try to force a feeding tube on her but, instead, just advised her that she would not live without one. She was still unsure about allowing this procedure. I told her that the choice was totally hers and that if she was tired of fighting this whole thing and wanted to let go, then she should choose not to have one. However if she had any desire to live, to try and wait for a cure, then she should fight with everything available to her. She chose the feeding tube and, after spending some time with her reassuring her decision, I walked outside and cried my eyes out and said my prayers to God, thanking Him for allowing her another opportuntiy to live.


By Jean Miller  

First, I'm sad to say that I lost my daughter Kelly to complications from Hungtington's Disease on November 15, 1998, a few months shy of her 31st birthday. Kelly was able to enjoy several more years of LIFE because of her decision to have a feeding tube. Here are a few more things we learned, from experience, after having the tube inserted.

Importance of Getting Information On The Type Of Tube

Make sure the hospital or surgeon give you all the information on the type of tube they insert before you leave the hospital. You want the manufacturer's name and the part number of the tube, including the head of the tube where the feeding connection goes into. Get the manufacturer's address and telephone/fax number too or insist that they become a part of your medical record.

On the continuous feed the little cap which closes off the tube is folded back so much, after a few months it won't close tightly without using tape to hold it down. After awhile this gets sticky or the cap will break off. When we ran into this "emergency" neither the doctor or the hospital had any of the information on the tube used on Kelly! I finally could read some of the fine (tiny) print on the tube and, after a major search and many phone calls, finally found the manufacturer and reordered some of the heads!! The manufacture air expressed replacements to me overnight and the emergency was over!!! Of course, they wouldn't do that without a doctor's orders so that took several more phone calls and faxes!!

After this experience, I filed letters of complaint with the hospital, the endocologist and our insurance company after this "emergency" and the hospital advised me that they would be changing their surgical procedures to make sure that manufacturing information on any items used in surgery would become part of the patient's medical records.

Naturally, when this first happened to u, I was in a PANIC that Kelly would need to go through the needless hassle of replacing the entire tube just because the cap broke off AND I was concerned about not being able to give her liquids plus was worried her stomach acids would leak out (what did I know?). IF THE CAP does break, don't panic. The little plastic tips that come on the Jevity or Ensure feeding bags can be inverted and stuck into the tube to keep it blocked until you can get a replacement!

Tube Replacement

Getting a feeding tube inserted is such an emotional time for families that most physician's neglect to tell them that the initial tube will need to be replaced and that even that tube will need to be replaced periodically!

The initial PEG tube is much longer then the standard tube used later and is only used until the patient adjusts to tube feeding. In my personal opinion the medical profession has not accepted the fact that some patients requiring feeding tubes to sustain their quality of life will live for YEARS after having this procedure done.

Subsequently, the manufacturer's do NOT utilize space-aged material in making the feeding tube and, even with proper care and cleaning, the tube becomes "gummy, develops pits inside of it and, overall, becomes difficult to use after 6 to 9 months requiring its replacement.

Tube replacement is nothing to panic about as replacing the tube does not require additional surgery UNLESS the tube is accidentally pulled out and NOT replaced immediately.

The doctor will tell you as long as you get in to get a displaced tube replaced in 24 hours, it does not represent a problem. However, in our case, after 6-8 hours it WAS necessary for Kelly to undergo another surgery and a new stoma hole made since the initial opening had already started to close up. Her tube had been accidentally pulled out sometime during the night and was not discovered until early the next morning. This occurred the summer before she died and she had already had the tube replaced twice before then.

The first stomach tube that they use is called the PEG tube. It has a long tube (about 10 to 12"!) that extends from the insertion point into the stomach. The PEG is used at first but can be changed to a foley tube or a button tube later.

A foley has a much shorter outward tube (about 3 inches) and is much more easier to handle and conceal under clothing. A button tube is flush with the skin. We were going to get Kelly the button tube but were forewarned by the doctor later than if the patient gains weight then new surgery is required to refit the device!

Kelly had a foley put in to replace her first tube 9 months after the initial surgery, however I probably would have preferred it being changed out around 7 months since the tube had become very gummy and was hard to keep clean. I was worried about infection and finally convinced the doctor to see her. Once he saw how bad the tube was he indicated it should have been changed out much earlier. You might be interested in knowing this doctor's nurse decided she would advise the doctor when she felt there was an emergency situation, ignoring the patients request. None of my or Hospice's phone calls to the doctor, requesting he look at the tube, were returned since he was never given our messages to begin with!! The replacement foley can be inserted by a skilled nurse, if necessary, or in the doctor's office vs on an in-patient basis.

Importance of Flushing Tube/Area Cleansing

It is important to keep the tube flushed out (cleaned) and to clean the area around the insertion on a daily or even twice a day schedule. Periodically you can put room temperature club soda or sprite, etc. into the tube to wash it as this does a better job then just using water.

When Kelly's insertion area got even a tad bit red, we (the hospice nurse and I) cleaned the area with a little diluted peroxide then put a little Neosporin around the opening, then sterile gauze (made to go around the tube) for a few days until it looked good again. Maybe I was overly cautious but she never got an infection!

I understand from other caregivers that men are more prone to slight infections around the stomach area opening due to the amount of their body hair. This has been resolved by shaving that area or more frequent cleanings.

Bolus vs. Continuous Feeding

With respect to feedings, Bolous feedings are where you can pour the liquid food into the tube and only takes 10 to 15 minutes. This can be done away from the home, in a restaurant, etc. However, initially, most doctors will use the continuous feed method (the machine) which has a time rate of drops per hour. Usually the patient is hospitalized the first few days after having this procedure done so they can adjust the rate of feeding to determine how the person is absorbing the liquids. They want to make sure they do not have problems with gas or regurgitating the fluids, which could cause problems. The gas making can make the person uncomfortable and possibly causing choking or aspiration of the fluids into the lungs.

If the person is bedridden the continuous feed is actually better for the patient according to our doctor. The rate is slower, allowing better digestion of the food and absorption into the body.

The bolous method, where the liquid is poured in slowly over 10 to 15 minutes, is faster but may have a tendency to cause gas or discomfort. Kelly had a lot of stomach aches when we tried the bolous. However, when I took Kelly out for short trips, etc., we used the bolous for liquids. Mostly water or Gatorade/pedialyte (which replenishes potassium, etc. to avoid dehydration).

Kelly's was on a rate of 85 cc's per hour which took a bottle of Jevity about 6 to 8 hours. She got 2 bottles of Jevity in 24 hours which is only 2,000 calories. Most people with Huntington's Disease should get 3000-6000 calories a day, but that is impossible with a tube and the maximum amount of cc's which can be given in an hour.

If the person can still eat regular foods the doctor may suggested bolus feedings every 2 hours or have their feedings supplemented with regular food. Kelly did have problems swallowing, therefore the Jevity was her primary nutrition. Periodically she would eat some pudding or thickened drink, until this became too difficult for her. Believe me, the 2,000 calories a day were a godsend when your loved one can't eat!! Kelly looked and felt wonderful and the feeding tube helped extend her life!

New Portable Mini Feeding Pump

Families have told me about a new device, EnteralLite, made by ZEVEX which is an Ambulatory Enteral Feeding Pump. It is the smallest and lightest, charges the quickest and lasts the longest. It has an interval feeding feature and works in any direction, and does not have a "drip chamber". This is an ideal device for mobile, active children making a significant contribution to their quality of life.


Inevitably there will be leaks and drips onto the floor. Clean the floor drips away as quickly as possible, especially carpet, as an odor can develop and the feeding fluid will stain. A floor covering other than carpet is easier to maintain. There were nights with Kelly were the Jevity tube was pulled from the foley/stomach tube somehow and she and the bed would be covered with sticky Jevity since the automatic pump pumps away connected or not to the stomach tube! We had some good laughs over this and I learned to check this more often!

Dehydration - Very Important!

If your loved on is on a feeding tube or having problems with excessive salvia due to degeneration of swallowing capabilities, you should read this message I wrote to Kelly's Hospice nurse after going through a horrible week of Kelly experiencing high fevers, constipation, hallucinations, etc..

After insisting on a clinical dietician assessment on Kelly it was determined that, even though her bloodwork was showing very borderline dehydration, she WAS chronically dehydrated since she was not receiving even the minimum daily intake of clear fluids!! Here is my message to the Hospice nurse:

    Am sitting here reading about ALS and increased salvia due to feeding tubes in a book entitled "Management of Speech and Swallowing in Degenerative Diseases" that a speech therapist loaned me. This book discusses all degenerative diseases and covers, in part, when people go on feeding tubes. The section on HD speech therapy refers you back to ALS if you're experiencing excessive salvia.

    Did you know that existing on just feeding tube fluids can cause a person to be in a PERSISTENT STATE OF CHRONIC DEHYDRATION? This causes excess salvia, low grade fevers etc.!  Did you know that people on feeding tubes MUST HAVE at least 3000 cc's of clear liquids daily to resist low grade consistent state of dehydration? Clear liquids are things like apple juice and soda but NOT water according to this book.

    Did you know that suctioning causes DEPLETION OF ELECTROLYTES in the body, adding to dehydration? People with degenerative diseases, especially those who have no intake of fluids other then feeding tube food, experience problems with salivary transport, dehydration or both resulting in thickening of secretions.

    Dysfunction in oral phases of deglutition caused in neuromuscular diseases and incoordination of buccal muscles, tongue and palate thickens salvia. Thickened salvia causes respiratory pathway changes, breathing with an open mouth where the flow of unhumidified air thru oral cavity causes evaporation which thickens salvia!!

    Evaporation, or pooling of salvia in oral cavity, makes it susceptible to evaporation and effectively results in a large volume of thickened salvia. Difficulty in deglutition brings a tendency to become dehydrated. Chronic dehydration is insidious and often not recognized. The liquids in the oral cavity don't stick together enough to swallow. DEHYDRATION is a MAJOR cause of thickened salvitory secretions!!!!!

    As I was reading this I was flabbergasted!!! Think how when Kelly gets these fevers and does lousy ....we put her on electrolytes during the fevers so she won't get dehydrated and she does good....goes back on Jevity only for a while until the fevers come back again. The poor kid is probably in a constant state of chronic dehydration except when we give her electrolytes when she's sick!

This book recommends giving patients 2 quarts of total fluids a day and working them up to 3000 cc's of clear liquids per day to reverse the state of chronic dehydration. It also recommends the patients intake/outtake be measured for several days after starting clear liquids for

  • urine output increases
  • urine gravity decrease

As a follow up to learning this critical information blood work was ordered on Kelly and it was determined that, in the medical professionals opinion, she was NOT dehydrated. Since I continued to challenge using guidelines for "non-ill" people on chronically ill people, as their disease may make their "normal" levels different, I insisted on a clinical dietician being called in to evaluate Kelly's clear liquid intake.

When having bloodwork done for dehydration SODIUM, POTASSIUM, UREA NITROGEN, CHLORIDE and CRETININE levels should be measured in blood. Make sure these are ordered if you question the possibility of dehydration.

I hate to say this, but ask to see the report yourself if you question whether your situation is being given serious consideration. (The measurement levels for determining dehydration are at the bottom of this message.)

Oral and Dental Care

Oral hygiene is important when feeding by G-tube because the gums still need to be exercised in order to maintain their health.

Here's some Q&A's I found on the internet:

  • Q. What are some of the problems likely to occur in the tube fed person?

    A. Malalignment of teeth - developmental abnormalities such as problems with muscle tone, persistence of certain oral reflexes and patterns of movement may lead to orthodontic problems. For instance, a tendency to tongue thrust may cause an "open bite", where the front teeth poke out. The actual problem may depend on the disability and which reflex is strong.

    It can be hard to treat these alignment problems. It is not difficult to make teeth move into better positions (a.g. by braces or plates), but after the treatment is finished, they may not stay there if the reason for the problem is still present.

    Plaque is a film on the teeth that builds up if they are not cleaned. Plaque can cause two problems. One is that bacteria may produce acid by fermenting sugars from the food we eat. This acid can demineralise or destroy the enamel of the tooth leading to tooth decay.

    The other problem is that bacteria may produce toxins and enzymes that cause gingivitis, and the breakdown of gum tissue. Gums look swollen; they bleed easily. Periodontitis, a condition where the membrane holding the tooth to the gum is broken down, may develop; eventually the tooth may be lost.

    Calculus is mineralized plaque. If the muscles around the mouth do not work well, if the tongue does not wipe the teeth, the person does not chew, then calculus can build up readily. The presence of calculus around the base of the tooth makes it harder to clean around the gum margin. Calculus build up is likely opposite the salivary ducts on the outer side of the upper back teeth and the tongue surface of the lower front teeth.

  • Q. How should teeth be cleaned?

    A. In the very young child, the teeth and gums can be rubbed with a piece of gauze or a face washer. Later on, a small brush can be used. Dental floss could then be added.

    While twice a day is best, if you are going to pick one time, then the most important time is before bedtime. Try not to make it at the "chaos" time, but rather when it is convenient and realistic.

    The best position for brushing someone else's teeth is from behind. Flossing is best done from the front. Use a soft bristled brush with a small head.

  • Q. Can an electric toothbrush help?

    A. Electric toothbrushes are not better cleaners than ordinary toothbrush; however they may be easier to use for some clients.

  • Q. What can be done if there is a strong bite reflex?

    A. Be aware if there is sensitivity to certain stimuli. There are soft mouth props that can be used to gently keep the mouth from closing.

    Dental floss holders make it easier to get the floss between the teeth. Even if you can't open the person's mouth, a lot of effective cleaning can be done just on the surfaces of the teeth in contact with the insides of the cheeks.

  • Q. What is the role of fluoride?

    A. It can be coated on the teeth from flouride gel. Flouroide painting is rarely done now that the water supply is flouridated .

    However, I found a flouroide liquid gel toothpaste I used on Kelly. Towards the end of her life, since it is impossible to get dental care at home, we used our finger with some cheese type cloth to keep her teeth, roof of mouth and tongue cleaned. If your loved one is not able to get continous professional dental care, remember to check for toothaches or gum senstivity when someone because unexpectedly ill. There may be an abses or a severe toothache causing the problem.

  • Q. Should water be given orally, even if plenty is being delivered through the G-tube?

    A. If possible, small amounts of water should be given at least once a day in order to maintain the swallowing action and to moisten the mouth. One way of delivering water very slowly is to prime a bolus feeding tube, clamp it well up towards the attached syringe and then gently squeeze so that drops come out. This method is very good for those who gag easily.

  • Q. How can gagging be minimized when brushing teeth?

    A. There is a toothbrush which attaches to a suction machine. It is called Vacu-Brush. Also, if the foaming of tooth paste causes gagging, either reduce or eliminate the paste. For children the amount of toothpaste should be the size of half a pea.

Bloodwork Normal vs Abnormal Levels for Determining Dehydration


Normal range of sodium in the blood is 135 to 145 milliosmoles per liter. Anything higher indicates dehydration. Readings below 125 and above 155 warrant a "panic" reaction by medical professionals. The sodium content is an indicator of the body's moisture level. When a person is dehydrated, the salts in the body become concentrated. Sometimes this higher reading can be detected by the amount of salt seen on the persons clothing when the sweat dries. Doctors have seen fatalities in the higher ranges.


A person's normal potassium level ranges from 3.5 to 5 milliosmoles per liter, but a higher reading is not unusual.

Urea Nitrogen

The normal urea nitrogen level is from 8 to 20 milligrams per deciliter. What's most important is the ratio of nitrogen to creatinine, the substance found in the next line. A normal ratio would be 10-1. A ratio of 25-1 would be found in a seriously ill person who was dehydrated or losing a lot of blood.


The normal range for creatinine, which reflects the kidney's condition, is 0.6 to 1.2 millgrams per deciliter. A high level of creatinine indicates kidney failure and can cause the kidney to shut down.


A normal chloride level would be from 98 to 107 milliosmoles per liter. A high reading is one more indicator of dehydration

The absence of fluids can thicken the blood, which promotes clotting. This can also be aggravated by bed-ridden patients. Therefore is a greater threat to people like Kelly who was bed-ridden.

Jean E. Miller



1. Flushing Tube:

Always make sure tube is flushed out with water after each feeding. To do this:

a. Unplug tube leading from machine and make sure cap to tube is put on! It may  come lose so tape it down to hold it until ready. Make sure fluid is turned OFF.

b. Using plunger, just insert outer plunger into feeding tube. Loosen tube from stomach by removing tape holding it in place. (This is only if you've taped the tube to the patient's stomach. We quit doing this once we learned Kelly wasn't prone to pull it out.)

c. Pour 60 cc water into plunger and work the fluid in downwards slowly towards the stomach until all excess fluids are down and tube is clean. Once water starts to go down you can insert the inner part of plunger and slowly plunge the fluid into stomach (if there's any resistance). Do NOT force fluid down.

d. Hold tube upwards until all fluid drains into stomach. Remove plunger and immediately put cap into tube to close it.

2. Mixing feeding liquids

a. Wash hands. Open up lid on jug of feeding fluid

b. Remove aluminum cover with knife

c. Add a few drops of food dye over the kitchen sink

d. Close lid tight. Insert tube plunger into the smaller hole on the white lid until flush with lid

e. Remove red cap from bottom end of tube

f. Hold bottle up and let fluid run down tube.

IMPORTANT when it first starts, hold the little valve in middle of tube upside down until fluid fills about 1/4 then let drop down for balance of filling tube.

g. Let fluids go all the way through tube (called bleeding the tube). Push blue control knob near bottle all the way down which stops fluid from flowing.

3. Hooking up tube to feeding machine.

a. Hang bottle upside down

b. Run glass vile through left side of feeder on bottom right of machine until the edge of the vile is flush with the edge of the feeder

c. Wrap tube around blue turn knob and bring up through opening on right until it snaps into place (lid will lay on opening)

d. Run tube through slit on right and feed to tube on Kelly

e. Remove tape from tube on Kelly and plug red knob from bottle into tube leading to her stomach.

4. Running machine

a. Push blue button near bottle all the way up to let fluid flow

b. Push machine ON and hit reset. Rate should be 85cc'c on the left and anywhere from 985 to 1000 on the right. Hit reset again then hit "run" and machine should start counting from zero

c. If alarm goes off, go through sequence b. again until it starts to run.

"Tube, Pumps & Food" which rates different feeding devices discusses both the Mic-Key tube and EnteralLite
The Legal Aspects of PEG Feeding in Patients with Huntington's Disease in the UK
There are some very good points made in this article discussing:
    Advance decision making
    Withholding Life-prolonging Treatment(PEG feeding)
    hydration and feeding (see below).
    Extra Safeguards regarding artificial nutrition and hydration.
    Legal reforms as they relate to PEG feeding

Gastrostomy Support
Here you will find helpful information about living with special tube feeding needs including a FAQ sheet on tubes.   The "Cookbook & Meal Ideas"  has a lot of good information.   The "Feeding Programs" links you to several good articles like "Thick and Easy" a complete line of products for people with swallowing difficulties.

ALS: Home Tube Feeding Guide for Patients with Amyotrophic Lateral Sclerosis
in PDF format for printing. Scan down page to: Patient Education: Factsheets

To crush or not to crush?(medicinal tablets)
What to consider before giving medications to a patient with a tube
or who has trouble swallowing

Medical Complications caused by Eating Disorders
Definitions; Starvation; Treatment for Starvation; Amenorrhea (when your period stops); Heart Attack Warnings and What is Tube Feeding?


Frequently Asked Questions about Tube Feeding

Gastrostomy Feeding Tube Placement

Muscular Dystrophy Article
What is a "Gastrostomy"?  Excellent information from finding out you should have a tube through care like will it hurt, what does it feel like, etc.

Internal Feeding Tube de-Clogger

The Drainage Bulb and G-Tube Holder
When used for feeding tubes, the product's lower profile and secure
fastening discourages inadvertent patient "pullout" or tampering.

Should My Child Have a Feeding Tube?
The decision to tube feed is a very difficult one - the realization that there
is a loss of skills, perhaps the guilt that you cannot manage some part of this, the prospect of surgical procedure and pain, and all the other emotionally charged issues with family, friends, and acquaintances including what it will do the getting people to help care for him at home and in school.

written by Suzanne Evans Morris, Ph.D. Speech-Language Pathologist

Feeding and Nutrition In Children With Developmental Disabilities

It Works For Us - From the Parents
Daily Care G-tubes, NG tubes, J-tubes, Bard Buttons and Mic-key Buttons

Feeding Tubes

Feeding Tube Patient Education Manual

Life On A Feeding Tube
Please feel free to read through the next few pages if you are interested
in learning about what my life on a feeding tube is like.

Going with the flow (preventing clogged feeding tubes)
Nurses can anticipate problems to prevent clogged enteral feeding tubes
with a few simple steps. Prevention is much better than having to try to clean...

Confused about what feeding tube goes where, and why?
Learn the ins and outs of each device by reading this comprehensive overview.