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Feeding Tips & Tricks Families Have Learned
 

Gtube Tips and Tricks http://www.specialchild.com/tips01.html

The following tips and tricks are from the above site and another one which no longer exists and also from parents of children with Hydranencephaly. Not all will be appropriate for our kids.

Preventing or treating irritation around the gtube:

         I found this stuff called New Skin at the pharmacy (Rite Aid). Itís for burns, has breathable hydro-gel, and is also in a sticky bandage form. If you slit it to the center as you would a piece of gauze, it works beautifully. It attaches itself to the stem part of the button, it breathes, it cools the burn from the stomach acid, and it heals, while stopping the leakage from oozing out. - M.C., Alameda, CA

         My daughter has had a G-tube since birth. She now has the button, which is much better. Her tube has always given us a problem with leaking. I have tried gauze in many sizes and make-up sponges that are circular with the hole cut out of the middle. These have worked, but I have found that taking 2 pieces of toilet paper or Ĺ a piece of a tissue, rolling it up like a cigarette, and then wrapping it around the tube works very well. This can be replaced wherever and whenever needed. This has kept my daughter dry and very clean. Even her doctor has bragged about this idea and how great her site looks. - J.L.S., Cleveland, TN

         Our daughter had terrible granulation tissue before someone told us about eucalyptus oil. We now use it everyday and have no build-up around the tube. It will also bring down the tissue. It has to be diluted: 2 drops of oil to 10-20 ml. of water. I swab it around the tube area with Q-tips. You may want to test it on another area first to be sure there will not be an allergic reaction. For my daughter, it worked wonderfully. I know of lots of other parents who have also tried it and had very good results. No more silver nitrate burns! I would recommend trying it. The oil can be bought at health stores or off the Internet. - L.J., city and state unknown

         My daughter has had a G-tube for about five years. Her nutrition is solely from her G-tube feeds. I use a creme around the site thatís called Calmeseptine. It's fairly new on the market and works very well for that area. I put the creme on 3 times a day and then cover it each time with a 2 x 2 gauze. My daughter very rarely has any problems with granulation or infection by the G-tube site. - J.K., city and state unknown

         My son had horrible problems with granulation tissue around his G-tube since the day it was placed. We were using silver nitrate every 2 to 4 days. We tried creams, antacids, Cholestin, and IV sponges, but none healed him. Someone told us about foam dressings. It worked! My son's G-tube site has been healed for the first time in 4 years! The brand name is called Hydrasorb. It is a foam dressing, and it absorbs any leakage and it cuts down on the scar tissue. It took about two months to fully heal while using this dressing, but his stomach is now dry and tight and the scar tissue has lessened. Try it! - D.M., Traverse City, MI

         We've found that, in addition to putting a 2"x2" split sponge between the skin and the button, using Silvadene cream regularly is the most effective way to keep the site mostly irritation-free.

         My daughter, Marissa, has a G-tube and we have gone through the same horrors of granulation tissue as a lot of you. Marissa just recently had to have surgery to remove this tissue as the silver nitrate did not help. I received a good tip from a friend of mine on the G-tube network: simply place a makeup square or round under the tube. I have to cut a slit in it, but it fits great under the "peg." It was tried by many and seems to work miracles with preventing the tissue from growing back. - T.S., Glens Falls, NY

         My daughter is 2 Ĺ years old. She has been on continuous feeds since she was 13 months old. I found a great way to keep her G-tube from coming out at night and at play. Take the tube and snake it through her diaper. Make sure to leave enough slack between her diaper and the button. To do this before I really had the system down, I would stand her up. The best diapers to use are the cheap ones with the tape; the Velcro ones don't keep the tube in place as well. - Initials, city and state unknown

         Silver nitrate is needed for our child to keep granuloma in check. However, we find the nitrate can discolor and irritate the adjacent skin. Petroleum jelly or other such substance (we use an anti-bacterial jelly called Bactraban) can help protect this area of the skin surrounding the tube site. What also helps is to keep our daughter flat for awhile after application of the silver nitrate. My understanding is that the nitrate reduces the granuloma a bit, which may permit gastric oozing, causing the nitrate stains. - J.D., Haverford, PA

         My seven year old with HD used to have a G-tube, but this was replaced by a button (which is heaven sent). The button is so much easier than the tube and there is no bulk. It is pretty much flush with the skin. We do have a problem with the button leaking though. We use split two by twos to put under the button (2 packages). This makes the button a little tighter and helps to control leaking. I put a piece of tape across the gauze to keep the button closed during the day. - Initials, city and state unknown

         For granulation tissue around the G-tube site, our doctor has prescribed Carafate suspension. We use a Q-tip to dab this on 2-3 times a day; this works really well. We also clean the site with normal saline (not the kind used for irrigation, but the kind used for cleaning) which is available over-the-counter in a large bottle (which lasts a long time). My 16 year old son has had a G-tube for about 9 years, so we have tried many remedies, but these work the best for us. There is also a very good multi-vitamin available in liquid form that we have used for years. It is Vi-Daylin, and is over-the-counter, but the pharmacy usually has to order it in. - B.S., Opelika, AL

         I have found that using gauze around the G-tube works well to prevent irritation and granulation tissue as well. To avoid having to have scissors handy to make the Ĺ cut, I found that 2x2 I.V. split gauze works great! - C.C., Milwaukee, WI

         Our son is G-tube fed and has had lots of trouble with granulated tissue. We tried everything - cortisone cream, Destin (allergic) and silver nitrate - but nothing seemed to work. We started putting 2x2 gauze, cut in the middle, with Maalox on the area around the tube. By cutting the gauze, you can fit it around the tube next to the skin. This will leave the G-tube site open to connect to the pump. He has not had anymore granulated tissue. This is easy for us and painless for him. At the first sign of irritation, we get the Maalox out. - R.H., Cookeville, TN

         A caution on the use of cortisone cream to treat granulation tissue: cortisone should only be used on an "off-again, on-again" basis, as it is a steroid, and can, over time, cause the skin to become thin and weak. Used three days on, three days off is reasonable. Used only on an "as-needed" basis is best. It is also great to combine cortisone cream with an over-the-counter antibiotic ointment (e.g., Bacitracin) and an antifungal cream (e.g., Lotrimin). This triple-combination approximates a commercial product called Kenalog cream (triamcinolone), which is popularly recommended by many parents on the G-tube mailing list. - S.G., Sudbury, MA

         Our son has a G-tube and has had problems with granulation tissue. I have found that cortisone cream shrinks the granulation tissue, and Desitin heals the irritation. Works wonders for us. - D.B., Dubuque, IA

         Our daughter has a G-Button that continually leaks due to granulation tissue. We have tried silver-nitrate and that didn't seem to help. So we took a disposable nursing pad and folded it into fourths and cut the corner off, leaving a hole in the center. We then cut two vertical lines opposite of each other. We clean her button, dry it, and put Desitin under it. Then we gently ease the nursing pad over the button and underneath it. It collects all of the moisture and draws it away from her skin. It stays in place all day or night. I am pleased to say, the granulation tissue has all but disappeared on its own! - K.T., Avon,

         G-Tube Site Protection: Mix crushed antacids (Tums, Rolaids) with zinc oxide (Desitin works well) and apply to stoma. This mixture will help protect the skin from any stomach acid leaking.

         Granuloma: Use Kenalog Cream (prescription only; may cause yeast infection and/or thinning of the skin if used in excess) to help shrink granulation tissue around a g-tube site. If that doesn't work, silver nitrate sticks or liquid can be prescribed and used at home. Before applying, be sure to put a barrier cream (like zinc oxide or petroleum jelly) on the skin around the granulation tissue to avoid burning and discoloration. Dab granuloma with a tissue after applying silver nitrate.


Preventing problems with the tubing:

         When my son began continuous feeds through the night with a pump, I was worried about the tube wrapping around his leg or arm and the pump alarm going off all the time. Then, I came across an item that holds him in one position, yet he has room to turn and move in. Itís called The Tucker Sling and it has been a life saver!! Their website shows pictures of the sling, and they have various sizes depending on the size of your child. - D.F., Modesto, CA

         To keep tubing from crimping at night due to rolling, I took an old toddler size sock, cut off the toe end, feed the tubing thru it and put it on his leg. This keeps the tubing in a general area and stops it from crimping. I have also heard of using a wrist sweatband. - T.H., Hilliard, OH

         Keep hands away from tubes: Tube tops work well for kids with g-tubes. They keep little hands away from the button, but they're hard to find. We use burn netting---cut it about 12 inches long (enough to fit over his chest and down to above his diaper). Then I put 3-4 gauze pads over the button. This also helps keep the button from opening if the reflux-valve has failed. ~ Lynette

         Prevent Kinks in Tubing: Run tubing through stiff, large diameter fish tank tubing. OR wrap a small piece of self-adhesive bandage around the button plug and the extension tubing to keep it from unlocking. This is especially helpful for children who are fed continuously through the night.

Cleaning gtube or extension tubing:

         To clean the G-tube, pour flat Coke/cola through the tube. It works wonders. Also to prevent leakage and skin irritation, use 4 x 4 tracheostomy drain sponges. They can be purchased at many drug stores. - D.T., Kenner, LA

         We try to make our son's feeding bags last a few days, but to avoid bacterial growth, we refrigerate the bag between cleanings. Works for food, and for food bags! - K.H., Rockford, IL

         My son had a G-tube for years before I figured out the best way to clean the connector tubing. All you need is water and a table knife. WHILE YOU ARE RUNNING WATER THROUGH THE TUBE, hold the tube between your thumb and the dull side of a table knife, and act as if you were curling a ribbon on a birthday present. Press the tube hard between your thumb and the knife and run the knife/thumb the full length of the tube, in the direction that the water is flowing. The pressure of the "ribbon curling" action will loosen all the gunk, and the water carries it away. It takes 10 seconds, and it works on all tubes, even tubes too small for a pipe cleaner. This method also unblocks plugged tubes. - D.M., Traverse City, MI

         To clean the extension sets for G-tubes, use extra-long pipe cleaners and hot soapy water. The long pipe cleaners can be bought in craft supply stores and work really well to remove the build up from inside the tube. - M.O., Ontario, Canada

         I use the wooden end of the long Q-tips to clean the extension tube to my son's G-tube. I just put in a drop of soap and then rinse well. Also, once a week, I soak it in 1/2 strength vinegar and then wash. - T.H., Hilliard, OH

         Feeding tube Build-up: If you notice buildup in any part of the tubing, first run hot water through it (not the gastrostomy tube or button itself) and try one or a combination of these suggestions courtesy of the G-Tube Listserv members:

         Cut about a 30" length of "weed-eater" cord (bought from hardware store) and snake it through the tubing. ~ Terry

          Use pipe cleaners.

         Run a denture cleaner mixture through the tubing and rinse well.

         Make a solution of meat tenderizer (Adolph's is best) and water, suck it up into the tubing with a syringe, and let it sit for a while. Rinse well. The papaya enzyme in the meat tenderizer eats away at the protein in the tubing, which is why it tenderizes steak. ~ Kate

         Pour white vinegar through the tubing, clamp it off and soak. Rinse well or the next feeding may curdle.

         A little dishwashing detergent and hot water can help, but rinse very well.

         To sanitize, use a weak bleach solution (one part bleach to ten parts water) and rinse well.

         With warm soapy water in the tubing, use a small roller up and down the length of the tube.

         Rinsing & Draining Bags: Buy inexpensive adhesive-backed plastic hooks to put near the sink to hang tubing or bags. ~ Naz

         I have a teacup hook in the bottom of a shelf inside the cabinet over my sink.  I hang the feeding tube bag from this when I need to rinse it out: itĻs high and itĻs over the sink.

Innovative Ideas for tube feeding away from home

         Bolus-feeding: when my son needed to be bolus-fed or vented with a 60cc barrel, we attached velcro to the barrel, and the corresponding piece to his feeding chair. For travel, we attached the corresponding piece to his car seat and his stroller. - L.S., Altadena, CA

         As far as traveling with my son, who by the way was a continuous G-tube feeder, it was very difficult until I got the hang of it. I made a hook out of a coat hanger for the bag to hang on and put it on the handle above the door with the pump on the floor. After stabilizing the pump, we were ready to ride. It is a process that takes practice getting from the house to the car and back again, but it can be done. I got tired of being home thinking I needed someone to help us go some place - being dependent on someone else's schedule. So, I experimented when I did have help, just in case I needed an extra hand to figure it out. Now, my son is fed by mouth only, and the G-tube was removed in December '98. Everyone isn't as lucky as we are, but if I can help one person out there with our quirky ways of doing things, I have accomplished more than I realize. - C.M., city and state unknown

         Recently, we took our 15 month old daughter, who is G-tube fed, on a trip to Australia to visit her grandparents. She gets a bolus feeding every few hours, so we have to take her tube and syringe with us, whenever we venture out. I had tried wrapping them in paper towels and putting them in her diaper bag. They usually ended up unwrapped and at the bottom of the bag or worse yet, on the ground, after we had rummaged through the bag a few times - yuck! We found a travel case in K-mart for a toothbrush and toothpaste that fit perfectly. If you detach the tube from the syringe, they lay on top of one another! Now you have a wonderful G-Tube travel case. - K.T., Avon, IN

Giving Medications via gtube:

         For those of you crushing vitamins, I have a better solution. I crushed them for years until one day I decided to try placing the vitamin in a little medicine cup and adding about 10cc of water. The next morning, the vitamin is dissolved and needs no crushing. - J.P., city unknown, SC

         For those who don't want to go through all the hassles of crushing vitamins, we have found that Shaklee makes a water soluble vitamin powder, called Vita-Lea. It dissolves readily and stays in suspension pretty well. The directions suggest mixing a teaspoon with several ounces of water, which can be a lot of additional fluids to administer. We use a smaller amount of water to mix the vitamins, and follow each syringe-ful with a plain water chaser, to keep the tube clear. - B.R., Forestville, CA

         When mixing medications for G-tube use, dilute the medication with a small amount of fairly warm water and when the medication is dissolved enough, add a small amount of cool water to make it a comfortable temperature. Most medications will dissolve well this way. - L.A., Colts Neck, NJ

         My daughter, who is G-tube fed, needs to take a multivitamin with minerals. The best ones I have found are the Bugs Bunny brand. They are sugar free and crush much easier than the others I have tried. Another plus is that they are cheaper and a child under 4 only has to take Ĺ of one instead of a whole one! - J.J., Denton, MD

         HeatherĻs uses compounded baclofen.  Her container was always spurting some out after I took out the syringe, so I was told to pre-dose the amount and leave the syringe in the top.  The next time I use it, I just pull out the syringe, squirt it into another syringe, replace the syringe, re-shake the bottle and pre-dose it again.  That way it was ready and settled for the next time I needed it.

General Gtube information

         I stumbled on this site after my son's G-tube was removed, but kept the address. It is a great site for new or old G-tube users or people dealing with a loved one that has one: www.iinet.com.au/~scarffam/gtube.html .

         Try putting a coat of clear nail polish over the numbers on a syringe to prevent them from washing off. - R.B., Calgary, Canada Where do I put this dripping end of the feeding bag tubing?

         Tape the plastic cover of the adapter to the IV pole and set the adapter inside when you aren't using the feeding bag.

         Priming the Tubing: Pour formula into feeding bag (set) and close lid. Turn bag upside down, holding the clamp open until all air is out. This is a good method to use with continuous feeding.

         Dribbling button: If the button leaks just a little bit after disconnecting the tubing, next time use just a tiny bit of air after the water flush. This creates an air pocket which prevents formula from leaking out.

         Clogged tube: Let a small amount of Coca-Cola (or any carbonated soda) work at the clog for 10 to 15 minutes, then gently flush with warm water. ~ G-tube Listserv Members

         Retching: To stop a child from retching or gagging, manipulate the ear. It is supposedly based on an acupressure point. I've tried it, it works!!

         A yardstick and a clamp from a hardware store make a nice IV Pole in a pinch.  You can put a nail or screw in the top of the stick and then clamp it on to a wheelchair or whatever.  I also use this to tape Jason's venting tube to when I have my hands full of other kids and Jason needs a good burp.

         I had to leave my IV pole at my sister's when I worked night shift. And I had a shelf I put the pump on and hung the bag on a screw (or nail) on the wall, when I was home

         We do the same thing as we donít have an IV pole (hospital didnít have any to give to us) so we just put a nail in the wall above wherever we are feeding Noah - we now have three places in the house - above his bed, above ours (as he has been in our bed more than his lately! LOL) and above the couch in the lounge room.

         We use the 3m sticky hooks for everything!!!!  They can be put up anywhere and come down when you need them too!!  We also use the plastic hooks (links) from 1st years, fisher price and many others to hang toys, tubing, feeding bags, monitor cords, etc.  They work great on pack and plays and portable cribs, swings and many, many other baby items!!!

Using Tape:

  • To remove adhesive residue from skin or tubing, use a bit of mineral oil, then wash with soap and water.
  • If tape irritates skin, dab a little Milk of Magnesia on the site and let dry before applying. Try Johnson & Johnson's waterproof tape. It leaves no residue on tubing.
  • Also, the best tape ever to hold the gauze against the skin (or an NG-tube to the cheek, or a nasal cannula) is Hypafix dressing retention sheet tape. The adhesive is very sticky, but doesn't hurt when pulled off, and it's hypoallergenic. The fabric is pliable and doesn't poke and it does need scissors to be cut. Most hospitals don't know about it, so you should ask for it to be ordered.

Venting (Decompression):

         Attach an extension tube to a feeding bag, but leave it empty. Connect to the g-tube or button and place the bag lower than the stomach (make sure to close the cap on the bag). Open all valves. After venting takes place, re-prime the tubing and replace stomach contents. This is great for avoiding messes! ~ Carol

         If bubbles won't come out easily, put a small amount of water into the stomach using the bolus method and try again.

Oral Feeding Tips:

         My son is 15 months old and requires all of his fluids to be thickened for him to tolerate them. I have found the best product so far (after trying a number of them) to be the Novartis Nutrition/Resource Product Range. They supply Thicken-Up powder and also pre-thickened juices - which are very convenient for traveling. Also, they have a product called Dairy Thick. They have an office I believe in Minnesota. - N.B., Brisbane, Queensland, Australia

         When your child is just beginning to eat, or if your child has some feeding problems, use a baby food grinder to grind up small portions of your leftovers. Freeze them in ice cube trays to use when your child needs a quick nutritious snack. - C.U., city and state unknown

         baby cereal, like what you get from WIC, makes a great thickener for oral feedings.  We add it to Jason's baby food until it's the right consistency.

         Instant mashed potatoes also make a great thickener. I used it to thicken soups or certain baby foods for Pauli

 

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August 16, 2001- January 12, 2005

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