Home Tube Feed­ing Guide for Patients with Amy­otrophic Lat­eral Sclerosis

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Home Tube Feed­ing Guide for Patients with Amy­otrophic Lat­eral Sclerosis

AUTHOR: Carmela Maloney



1. Intro­duc­tion
2. Tube feed­ing pre­scribed for you
3. Admin­is­ter­ing tube feed­ing
4. Infec­tion con­trol con­sid­er­a­tions
5. Giv­ing med­ica­tions
6. Per­sonal care tips
7. Prob­lem solving

1. Intro­duc­tion

Good nutri­tion is impor­tant for over­all health and well-​being. For indi­vid­u­als with Amy­otrophic Lat­eral Scle­ro­sis (ALS), main­tain­ing ade­quate nutri­ent and fluid intake is a con­stant strug­gle when faced with increas­ing swal­low­ing dif­fi­cul­ties, fatigue, weak­ness, breath­ing prob­lems and lack of appetite.

Tube feed­ing thus pro­vides a prac­ti­cal option for those indi­vid­u­als who are unable to meet their nutri­tional needs by mouth or unable to swal­low safely. With a tube feed­ing, the source of food is in a liq­uid form. When given in the right amounts, tube feed­ing for­mu­las pro­vide all the nutri­ents found in a well-​balanced diet.

There are many indi­vid­u­als with ALS who are at home with their tube feed­ings and who main­tain their lifestyles such as trav­el­ling, shop­ping, and par­tic­i­pat­ing in fam­ily activities.

This book­let was pre­pared to help you man­age your tube feed­ing at home. Your dietit­ian, nurse and doc­tor will assist you and your fam­ily in learn­ing this feed­ing method. They will teach you how to pre­pare and admin­is­ter your tube feed­ing, what equip­ment you need, infec­tion con­trol pro­ce­dures, how to give your med­ica­tions, how to pre­vent prob­lems and what to do if prob­lems should occur.

Your tube feed­ing guide has been designed to meet your nutri­tional needs and lifestyle. Keep it close at hand and check it regularly.

If you have any ques­tions or would like more infor­ma­tion, please con­tact your dietit­ian, nurse or doc­tor. The tele­phone num­bers are on the front cover of this booklet.

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2. Tube Feed­ing Pre­scribed For You

a) Type of Tube Feed­ing:
Your type of feed­ing is called a Per­cu­ta­neous Endo­scopic Gas­tros­tomy or PEG tube feed­ing. This sim­ply means that a feed­ing tube was placed directly into your stom­ach through the abdom­i­nal wall, to the out­side of the body under the visual guid­ance of an endo­scope ( a lighted cam­era). Your tube extends _​_​_​_​_​_​_​_​_​cm from the skin with a cap on the end of it. To keep the tube in place, a bol­ster is placed near the skin sur­round­ing your stoma (the open­ing to the stom­ach from the out­side skin). Your nurse should mark your PEG tube exactly at the tube entry site with a non-​toxic per­ma­nent marker. Any changes from this posi­tion will indi­cate that your PEG tube has moved. If so, do not start the feed­ing. Notify your nurse or doctor.

ImageBrand Name: _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Size: _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Date Inserted: _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​

b) Type of Tube Feed­ing For­mula:
Jevity 12/​Isosource 1.5 _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Nutren 2.0/Resource 2.0 _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Glucerna/​Dia­betic Resource from _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Pep­ta­men 1.2/Peptamen 1.5 _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​
Other: _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​from _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​

If you need to make a sub­sti­tu­tion, check with your dietit­ian first as for­mu­las vary in nutri­ent con­tent. The above for­mu­las can be pur­chased from your local phar­macy. Con­tact your phar­ma­cist to make arrange­ments or for home deliv­ery ser­vices: Dufour & Lav­i­gne: (514) 5279381 or Calea: (514) 3353500 or Stoma Med­ical (450) 7860786.

c) Your Nutri­tional Requirements:

_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​calo­ries per day.
_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​grams of pro­tein per day.
_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​_​ml of water per day.

d) Method of Deliv­er­ing Tube Feed­ing & Tube Feed­ing Pro­to­col:

You need to deliver _​_​_​_​_​_​_​ml of for­mula within _​_​_​_​_​_​minutes,________ times per day.
Sched­ule: _​_​_​_​_​_​_​_​_​_​, _​_​_​_​_​_​_​_​_​_​, _​_​_​_​_​_​_​_​_​_​, _​_​_​_​_​_​_​_​_​_​, _​_​_​_​_​_​_​_​_​_​, _​_​_​_​_​_​_​_​_​_​. You need to flush your feed­ing tube with _​_​_​_​_​_​_​_​ml of water after each feed­ing to pre­vent it from plugging.

You need to deliver _​_​_​_​_​_​_​_​_​ml per hour of for­mula from _​_​_​_​_​_​_​_​to _​_​_​_​_​_​_​_​for a total of _​_​_​_​_​_​_​_​hours. You need to flush your feed­ing tube with _​_​_​_​_​_​_​_​ml of water after each feed­ing to pre­vent it from plugging.

Pump: You need to set your pump at _​_​_​_​_​_​_​_​ml per hour.

Grav­ity Drip: You need to deliver your for­mula by gravity.

Flush _​_​_​_​_​_​_​_​ml of water per day or _​_​_​_​_​_​_​ml 3 X per day.

e) Equip­ment needed:
pump to set rate of feed­ing.
pole or _​_​_​_​_​_​_​_​_​_​_​for hang­ing tube feed­ing bag.
admin­is­tra­tion set (feed­ing bag and tub­ing)
syringe (60 ml or 2 oz catheter tip syringe)

If cov­ered by OPHQ, all equip­ment needed will be pro­vided free of charge. Oth­er­wise, the above may be pur­chased or rented from Dufour & Lav­i­gne or Care­mark or Stoma Med­ical. Refer to Tube Feed­ing For­mula sec­tion for tele­phone numbers.

Replace­ment of a PEG tube, cap or adapter can be obtained from GI depart­ment at the RVH. Tel: (514) 8431536

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3. Admin­is­ter­ing Tube Feeding

a) Posi­tion of Body:
Image You can walk, sit upright in a chair or sit propped up in a bed while receiv­ing your tube feed­ing. If lying down, make sure your head is ele­vated at an angle of at least 45 degrees from the bed.

ImageStay in the above accept­able posi­tions dur­ing and up to 30 to 60 min­utes after your tube feed­ing is fin­ished. DO NOT LIE FLAT UNTIL THEN.

This will reduce the risk of aspi­ra­tion (acci­den­tal entry of for­mula into the lungs).

b) Ver­i­fy­ing Gas­tric Resid­u­als: (only if asked by ALS Inter­dis­ci­pli­nary team)

  1. You will need to check the gas­tric resid­u­als (pres­ence of stom­ach con­tents) prior to each feed­ing. To do this, attach the syringe to the end of your gas­tros­tomy tube (not the tub­ing on your feed­ing bag).
  2. ImageWith the syringe in place, slowly pull back on the plunger until you meet resis­tance. This will cause the stom­ach con­tents to enter the syringe.
  3. Note how much stom­ach con­tents or resid­u­als can be with­drawn, then slowly push it back. Flush with 30 ml water.
    • Any or all gas­tric resid­u­als must be returned to the stomach.
    • If the stom­ach is empty, noth­ing will be withdrawn.
    • If the amount of resid­u­als is greater than _​_​_​_​_​_​_​ml, wait 30 to 60 min­utes. Recheck every hour. If it con­tin­ues to be high, do not attempt the feed­ing and report the prob­lem to your doc­tor, nurse or dietitian.
    N.B. If you have just recently eaten by mouth, wait at least 30 min­utes before check­ing for gas­tric residuals.

c) Start­ing Tube Feeding:

    1. Close the clamp on your feed­ing tube.


    1. Pour _​_​_​_​_​_​_​_​_​ml of your for­mula into the feed­ing bag.


    1. Hang the feed­ing bag on a pole or _​_​_​_​_​_​_​_​_​_​_​_​_​_​_​that is higher than your head.


    1. Hold the end of your feed­ing tube to pre­vent spills.
    2. Open the clamp.


    1. Allow the for­mula to reach the end of your feed­ing tube to get rid of any air in the tube.


    1. Close the clamp.
      If you are using a pump, you now attach the feed­ing tube to the built-​in recep­ta­cle on your pump.


    1. Clamp or kink (if clamp is not avail­able) your gas­tros­tomy tube near the tip.


    1. Open the cap on your gas­tros­tomy tube and con­nect to the end of the feed­ing tube.


  1. If you are using a pump, set the pump at _​_​_​_​_​_​ml per hour.
    • Unclamp or unkink your gas­tros­tomy tube and open the clamp of your feed­ing tube.
    • Start the pump.
    If you are not using a pump, unclamp or unkink your gas­tros­tomy tube and slowly open the clamp on the feed­ing tube.
    • If the feed­ing is too slow, open the clamp of the feed­ing tube more.
    • If the feed­ing is too fast, close the clamp more.

d) Stop­ping Tube Feeding:

    1. When the for­mula in your feed­ing bag is fin­ished, close the clamp of your feed­ing tube or stop the pump if applicable.


    1. Dis­con­nect the feed­ing tube from the gas­tros­tomy tube.


    1. Flush _​_​_​_​_​_​_​_​_​ml of water into your gas­tros­tomy tube with a syringe.


  1. Put the cap back on your gas­tros­tomy tube.
  2. Refer to your Tube Feed­ing Pro­to­col to see if extra water is needed.
  3. If you are refill­ing the feed­ing bag for con­tin­u­ous tube feed­ing, flush the gas­tros­tomy tube with_​_​_​_​_​_​_​_​_​ml of water using a syringe. The feed­ing bag may be rinsed with warm water and then drained prior to refill­ing with the for­mula. See detailed instruc­tions for clean­ing under “Infec­tion Con­trol Con­sid­er­a­tions” section.

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4. Infec­tion Con­trol Considerations

  • Before you pre­pare your tube feed­ing, wash your hands with soap and water to reduce risk of infection.
  • Use only clean equip­ment and admin­is­tra­tion set (tub­ing with feed­ing bag). Fol­low the manufacturer’s instruc­tions on how often it needs to be changed. Usu­ally every 24 hours.
  • If reusing the feed­ing bag with tub­ing, rinse with warm water and dish soap 3 times a day. Use a clean bot­tle brush to scrub inside the bag. Rinse again with warm water.


Once a day, mix 60 ml (1÷4 cup) of vine­gar with 250 ml (1 cup) of water. Pour this vine­gar and water mix­ture into the feed­ing bag and tub­ing. Sit the bag in the clean sink for 10 min­utes. Empty bag out. Rinse the feed­ing bag and tub­ing again with cool water. Be sure to com­pletely rinse it well. Keep your cleaned feed­ing bag and tub­ing in the refrig­er­a­tor until used again. The syringe should be cleaned the same way.


  • Dis­card the feed­ing bag with tub­ing if for­mula begins to adhere to the tub­ing and does not rinse clean or if any leaks should develop.
  • Use only fresh for­mu­las at every feed­ing time. Check the date of expi­ra­tion prior to open­ing new formulas.
  • For con­tin­u­ous tube feed­ing, hang fresh for­mula every 4 hours. Do not let for­mula hang longer than 4 hours at a time at room tem­per­a­ture espe­cially dur­ing warm, humid weather as these are ideal con­di­tions for bac­te­ria to grow.
  • Cover unused open for­mu­las and refrig­er­ate. Dis­card unused open for­mu­las after 24 hours.
  • PEG tube may need to be changed every 6 months to 1 year. Con­sult your doctor.

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5. Giv­ing Medications

Med­ica­tions may be given through the gas­tros­tomy tube if the doc­tor allows. Ask the doc­tor to order pre­scrip­tions in liq­uid form, if pos­si­ble. You can­not crush just any med­ica­tion. Con­sult your phar­ma­cist about any pos­si­ble inter­ac­tions when taken in crushed form. Do not mix med­ica­tions. Give separately.

  1. If solid med­ica­tion must be used, crush and dis­solve the pre­scribed amount in 30-​50ml of warm water in a small cup. If in liq­uid form, pour the pre­scribed amount of liq­uid into a small cup or dilute first with water if too viscous.
  2. Open the cap of your gas­tros­tomy tube. Flush with 30 ml of water.
  3. Draw up the med­ica­tion with a syringe.
  4. Inject the med­ica­tion into the gas­tros­tomy tube.
  5. Flush tube with 3050 ml of warm water and replace the cap.
  6. Stay upright or at an angle of at least 30 degree from the bed for 30 min­utes after admin­is­ter­ing the medication.

If you are hav­ing trou­ble dis­solv­ing your med­ica­tions, con­tact your nurse.

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6. Per­sonal Care Tips

Mon­i­tor your weight weekly, if pos­si­ble. If you notice any weight change, please con­tact your clin­i­cal dietit­ian. Your tube feed­ing can be adjusted if needed.

If pos­si­ble, to keep your mouth clean, rinse 3 X a day. Use 5 ml (1 tsp) of bak­ing soda in 500 ml (2 cups) of warm water to rinse. Clean your teeth care­fully. An elec­tric tooth­brush, sponge-​tipped too­thettes and den­tal floss can be use­ful. You may also have your teeth cleaned by a den­tal hygienist.

Daily, using mild soap and warm water, gen­tly clean and dry area around the gas­tros­tomy tube as you bathe or shower. Always check for signs of red­ness, pain or sore­ness, or unusual leak­ing around the stoma. Report any signs of these symp­toms to your nurse or doctor.

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7. Prob­lem Solving


  • Take your feed­ing more slowly. Adjust the clamp or reduce your tube feed­ing rate to _​_​_​_​_​_​_​ml/​hour.
  • Sit up dur­ing your feed­ing. Do not lie down dur­ing and up to 60 min­utes after your feed­ing is finished.
  • Walk if you can after your feed­ing has finished.
  • Care­fully open the cap on your tube to let gas out of your stom­ach. Pro­tect your cloth­ing as stom­ach con­tents may come out as well.


  • Always fol­low your sched­ule for water.
  • If you are still thirsty or have a dry mouth, call your dietit­ian to reeval­u­ate your water requirement.
  • For imme­di­ate relief, swab your mouth with moist­ened sponge-​tipped toothettes.


  • Flush _​_​_​_​_​_​_​ml more water into your gas­tros­tomy tube after feedings.
  • Add _​_​_​_​_​_​_​ml of prune juice into your gas­tros­tomy tube_​_​_​_​_​_​_​times a day. Rinse your tube well with 30 ml of water after the prune juice.
  • Ask your dietit­ian for a for­mula con­tain­ing fiber if you are not already on it.
  • If the prob­lem per­sists, you may need to ask your doc­tor to pre­scribe bulk­form­ing agents, stool soft­ener or laxative.


  • Always use for­mula that is at room temperature.
  • Always use clean equipment.
  • Take your feed­ings more slowly. Adjust the clamp or reduce your tube feed­ing rate to _​_​_​_​_​_​_​_​ml/​hour.
  • Increase the amount of water taken to _​_​_​_​_​_​_​ml with each feeding.
  • Add 30 ml of liq­uid pectin into your gas­tros­tomy tube _​_​_​_​_​_​_​_​times per day: Mix pectin well in a small cup with 60120 ml warm water. Draw up the pectin solu­tion with a syringe and inject into the tube. Flush with at least 30 ml warm water.
  • Check your tem­per­a­ture. If your tem­per­a­ture is above nor­mal value, inform your nurse or doctor.


  • If com­pletely blocked: DO NOT attempt to unblock with liq­uids
    or insert any for­eign object into tube. Con­tact your doctor.
  • If par­tially clogged: Flush your feed­ing tube with 60 ml of warm water. Then aspi­rate by pulling back on the plunger. Repeat sev­eral times. If it con­tin­ues to be par­tially blocked, con­tact your doc­tor or nurse. A pan­cre­atic enzyme may be prescribed.
  • To pre­vent a clogged feed­ing tube:
    • Do not mix your med­ica­tions together. Take each one separately.
    • Do not mix med­ica­tions with formula.
    • Rinse your feed­ing tube with at least 30 ml of warm water before and after your medications.
    • Make sure you always flush your feed­ing tube with the amount of water pre­scribed in your guide every 4 hours with con­tin­u­ous feed­ings and before and after inter­mit­tent feedings.
    • Flush feed­ing tube after check­ing residuals.
    • Flush feed­ing tube after any bev­er­ages taken

N.B.: If you are expe­ri­enc­ing vom­it­ing, unusual dis­ten­tion in the abdomen area, severe cramps, or sig­nif­i­cant weight change, con­tact your doc­tor.
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8. Addi­tional Resources & Information

Infor­ma­tion about InfoNEURO
Neuro-​Patient Resource Cen­tre
Mon­treal Neu­ro­log­i­cal Hosp­tial Room 354
Tel: (514) 3985358
E-​mail: infoneuro@​muhc.​mcgill.​ca
Web site: http://​infoneuro​.mcgill​.ca/

This infor­ma­tion is for edu­ca­tional pur­poses only, and is not intended to replace the advice of a pro­fes­sional health­care prac­ti­tioner, or to sub­sti­tute for med­ical care.

AUTHOR: Carmela Maloney


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