Long Term Tube Feeding of an older child (toddler)

[scarlet121]

It is really good we live close, we have the same GI and get together every now and again! Miki is a cutie pie!

[Mikenzees mum]

teresa we will be new PEG mummies together soon, im so nervous im used to NG feeding and im glad she wont have tape on her face anymore but at the sametime in nervous cause its difernent

are they doing a peg or a butten on your dd, our surgen said she will try and do a button straight away on mikenzee but may need a peg first for a while just depend on what happens in theartre

[Mikenzees mum]

we are still waiting on an exact date for her surgery hopefully sooner rather than later as she isnt doin gwell at the moment

i dont know about the zoton kenz did better on losec that zoton and the same with parker rachels boy

[Mikenzees mum]

kenzees surgery has been put off now as they dont know why she is doing so badly so got more ***** to go through i dont know what yet i wil update when i know

the motility study was a night mare but was very worth it as we now know what we are deaing with, hasnt helped fixed her yet but we know what going

[Mikenzees mum]

whats NFI mean is is no f*** idea roflmao if so that it i think im not sure waitng on a call from the GI she will tell me whats going on

[Kirsty EW]

Hi guys,

No changes with us on the eating front at this stage. Still continuing on with our NG feeding regime - three bolus feeds via syringe and continous overnight feeds. We offer Gus meals three times a day and snacks for morning tea and afternoon tea. So far no luck. He's just not interested, or indeed hungry. As Gus is still very underweight and small for his age our team have advised that it is not yet the right time to challenge him to feed orally by reducing the volumes of his NG feeds. Gus currently weighs 8.3kg. DH and I are still going to remain with the NG tube feeds for another few months rather than move to the g-peg. We will reconsider this once we see how Gus goes over the winter with weight gains/eating. I am really keen to hear how you guys go with your pegs.

Whilst on another forum I'm a member of I stumbled across some information relating to gastrostomy pegs. Thought it may be useful. I understand this information has been collated by one a mum with a child with feeding issues. She seems to have done a really good job, so hopefully she won't mind me copying the article here in case it can be of some use to you guys when you start feeding Em and Kenzee with a g-peg.

Hope you guys are well.


"Practical tips for caring for someone with a gastrostomy

These tips have been gathered through either personal experience or from Internet feeding forums. As everyone has a different feeding regime and different equipment for their child, not all tips will be relevant to your situation. I have broken up the tips into groups as follows:
• Stoma / Site Care
• Button Changing and Care
• Clothing
• Equipment
• Travelling
• Preparing Feeds
• Cleaning equipment
• General
• Useful Internet sites


Stoma / Site Care
• Use 5cm square folded gauze between the button and skin while feeding to catch leaks from stoma, but change often or leave off for a while to let dry out again. Cut a slit to centre and use micropore tape across slit so that tape is not touching the skin. Can also use cut IV gauze, lyofoam (medicated smooth material), makeup pad, tissues, or a breast pad. Some health professionals believe this will act as a wick and make leaking worse, but just about every parent on all the forums listed below find this helps reduce irritation and granulation tissue.
• Stomahesive powder, calmoseptine, diluted eucalyptus oil and eczema cream are all good for helping skin irritation around stoma. Severe cases may require antibiotics.
• You can swim with a gastrostomy, but you should steer clear of stagnant water like still lakes. Clean and dry the site well after swimming.
• Fill the bath to just above the gastrostomy to keep it very clean.
• Don’t forget to turn the button every day to stop skin attaching (like earrings)

Button Changing and Care
• Record or memorise button type and size in case of emergencies. Carry a spare button and emergency pack as detailed under Travelling.
• Buttons won't look the same every day. They may stick out more or less. Nurses should teach parents what is too tight or too loose, and that anything in between is OK. The variation sometimes depends on whether a child has just been fed. Gas will also cause a button to be too tight.
• Sometimes you may get a button with a slight fault: a valve with a slightly worse seal on it, or a ‘lid’, which pops open very easily. Strong or frequent retching or vomiting can sometimes make the valve on a Mic-key button start to leak sooner than you would expect. All valves tend to leak over time.
• If the tube you connect to the button hangs at an awkward angle, or your child won't stop playing with his toys long enough for you to connect the feed, you can turn the button until it is at a convenient orientation.
• Use lubricant when replacing or changing a button. If a button comes out, check the balloon is okay by deflating and inflating with water, then if okay rinse under clean water, apply lubricant and place in stoma. You may need to get the angle right and the child should be relaxed.
• Give pain relief 20 to 90 minutes before a planned button change. If it hurts, the more tense they get, the tighter the muscles and the smaller the stoma. Tickling or joking can help relax them.

Clothing
Some people prefer to have the button or tubes easily accessible at all times, eg continuous fed children, others prefer to hide the button during the day, like overnight pump fed children, so there is a wide variety of suggestions here.
• Use a bodysuit or overalls for childcare to stop other kids seeing or accessing button. Otherwise a body stocking type bandage around their middle.
• Use a bodysuit (with press-studs between legs) for sleeping in to feed tubes through to stop them wrapping around neck and body, and to stop button being pulled out.
• Use a sleeping bag that zips from top to bottom or has harness holes to stop them getting to tubes while being fed overnight and keeps tubes from wrapping around neck and body. Use the shorter 30cm extension tubes as the join stays inside the sleeping bag where it can’t be played with.
• Use an old sock or wristband to keep tubing straight down leg during feeding.
• Use a full one-piece swimming sunsuit to hide the button at pool / beach
• Wear a vest / singlet under a ballet outfit or gymnastics leotard, as it helps to stop the button stretching when lifting arms above head.
• Some people cut a hole in the front of all in one undies to have easy access to the fitting if they don’t have to worry too much about the child pulling on it. However another mother puts her kid in an all in one and then unpicks a small hole in the side seam so she can feed the extension tube through it for access but still keep the button covered.
• Commercial adaptive clothing is available, eg the Tummy Tunnel patches mentioned in useful Internet links.

Equipment
• If fed in bed the bed should be at a 30-degree angle. Use a pillow under the mattress or bricks under end of cot / bed. I found Shea moved around so much he would end up head down if angle was too high, so I just use a pillow under mattress now he is sleeping with a pillow on top of mattress as well.
• Use a commercial product like a Tucker Sling (link in Useful Internet Links) to position child semi-upright in their cot & keep them still. This is like a Velcro strap that allows them to roll over but keeps them straight. It comes with an optional wedge to hold semi-upright.
• Use a cot as long as possible to ensure they don’t move around too much when connected. Run tubes through the rungs of the cot from pump on small table beside cot close to mattress height to allow maximum room to move around. Portacots tend to be difficult to get tube length and mattress angles right.
• Use a 3M removable hook to hang the bag at correct height above pump (particularly useful when travelling), or a coat-hanger hung off a picture, mirror or lamp. You don’t need a big IV pole.
• If child is still small, use a rocker or bouncer for gravity feeds, or a slightly reclined highchair. They should be semi-reclined so the stomach is not cramped up when the formula goes in.
• Ask if your child can have a backpack for their pump. It means they can be mobile instead of having to spend hours each day sitting still.
• Practice priming your pump bags with water until you get the hang of it. Be prepared for lots of alarms until you work out the idiosyncrasies of your setup.
• There are different kinds of pumps, all with their advantages and disadvantages. If you don't get on well with one (the alarm is too sensitive, it is too bulky) ask around about other kinds and see if you can get a different brand.
• Kangaroo Pumps have a volume control for the alarm.
• Common causes of flow errors on a Kangaroo Pump:
o Splashes in drip chamber. Ensure formula in drip chamber is not too high, if it is you will need to empty the bag into a jug, drain the tubes, and start again. If level is okay, clamp tubes, remove from pump and run the formula around the drip chamber to coat the inside. Splashes run away easier then.
o Shake the bag and check for lumps
o Knees or hips leaning on tube
o A kink in the tube (like when you want to stop a garden hose)
Travelling
• Carry an emergency kit containing antibacterial gel, micropore, syringe, sterile saline and water vials, and lubricant with you at all times. Depending on your needs it may also include hyperfix pre-cut, buttons or tubes, foley catheter. I use a plastic pencil case that fits in my bag or the nappy bag. The micropore can be used to hold in the button until you can get to a spare if the balloon bursts.
• Take a spare button on holidays (local hospitals aren’t likely to have a paediatric size available) or more than an hour from home.
• Carry flushing water in a baby bottle when out and about, or make up pre-prepared 30ml syringes with screw caps on the ends so they don’t leak, or carry small vials of sterile water like they use in hospital. Using pre-prepared syringes means you can measure exactly how much water you use if you are on a strict fluid intake.
• Leave some of the flushing water in the tube for gravity feeds, i.e. clamp when water gets to join of syringe / tube, so tube is primed for next use when out and about.
• Hang the pump bag off handgrip above door in car if feeds are required while driving. Pump can be placed on floor if necessary.
• For gravity feeds syringes can be Velcro’d or taped (micropore or hyperfix usually stick well enough) to highchairs, strollers, carseats etc rather than holding them at correct height.
• Dreambaby make a bottle clamp to hold the bottle of feed on a pram, wheelchair, door handle, tree etc. Link in Useful Internet Links.
• Use a plastic toothbrush and toothpaste travel case to transport syringes and tubes.

Preparing Feeds
• Not all kids can tolerate the volumes prescribed by the textbooks. Parents need to watch their child. They'll learn when the child is almost full by the child’s actions. Some will squirm and act uncomfortable. Let them decide when they’ve had enough.
• Use warm water to dissolve tablets rather than crushing them, and then cool to a comfortable temperature once dissolved.
• To avoid lumps if using Pediasure formula, mix using refrigerated water only, and stir with a fork after each couple of scoops, then add more and stir again.
• Tips if you need to thicken the formula:
o Add Karicare thickener 12 hours ahead of when you’ll need it. It will thicken and separate, but tends to stop thickening any more after about 12 hours. Just before use stir really well, crushing lumps with a fork if necessary, as lumps will cause a flow error.
o Use the pump to prime the tubes, as it will not run through when thickened.
o For a bolus feed you will need to use the syringe to very slowly control the rate the thickened formula runs, to imitate gravity.

Cleaning equipment (it is against manufacturer recommendations to reuse bags and tubes but government funding will not provide bags and extension tubes to be replaced daily)

• Clean bags and tubes with hottest water possible (slowly syringe through some hot water to clean extensions). Although soapy water was recommended, the detergent seemed to make the formula stick more next time, and built up quicker than if plain hot water was used.
• Use a pipe cleaner to clear blockages but be careful of putting wire through side of tube. Fresh Coke (not diet coke or pepsi) can also be used to clear blockages, but not if your feed contains a protein called caseine. You can also use a teaspoon of bicarb of soda, mixed well with 30mls of tepid water. Allow it to stay in the tube for at least 20 minutes to neutralise all feed and meds. Then you flush with fresh water only.
• Clean tubes with blunt side of knife (run knife along tube in same direction as hot running water). This can be adapted to use a fingernail or just squeeze the tube instead.
• Refrigerate bags and tubes between feedings when at home. Kangaroo bags and tubes fit nicely in a 2l ice cream container with the flushing syringes.
General
• Stoma’s tend to leak when the child has a fever. Some parents believe that certain medications can cause it to leak more too. Rarely - the child may be allergic to the material the balloon is made from, and have to change to a different type of button.
• It’s possible to get skin conditions such as chicken pox inside the tract. Can’t do much but give painkillers and cut back on feeds if it hurts.
• A coat of clear nail polish over the numbers on a syringe will stop them washing off.
• Give half a gravity feed, wait 20 minutes then complete the feed.
• Don’t be embarrassed about feeding in public. Most people won’t even notice, and if they do ask about it a good response is ”wouldn’t you like to get your food this way and not have to taste your vegetables?”
• Ask for an out of date button to put in a teddy for your child to get used to the idea. Decide first if you are happy for your child to play with the button or not.
• Find out what your insurance or public funding will cover. Some health funds will cover some of the cost of spare buttons and bags until the PADP funding comes through. They may also cover syringes or formula but most will not. You may need to discuss with a supervisor or manager rather than just a call centre worker.
• Having a button does not mean your child can't go to a mainstream school or pre-school. The school may be willing to learn to do the feeds, and the other children won't be bothered about your child's button. Note that in NSW the SUPPS / SNSS funding is not allowed to be used to employ someone to administer tube feeds. The childcare can choose whether or not they will do it. In some areas the community nurses may agree to administer feeds, but generally can’t guarantee an exact time.
• Even for tube fed kids, it's good to include them in mealtime, even if their meal is liquid. Meals are very social events.
• For some fortunate children, the tube is temporary. Parents in that happy position always need to think of the habits that are being formed with tube feeding. There are very few resources like books to help those parents however.
• Birthday parties – be creative if your child is nil by mouth, or is allowed limited oral intake, e.g. if they are allowed lollypops you can have a lollypop cake made by sticking lollypops into a covered piece of foam. Plan the party at a time when the other kids won't be hungry or thirsty, and put on the invitations that out of consideration for the birthday child, there will be no food or drink available. "

[Kirsty EW]

No worries Theresa. xx Glad to be able to pass on the wonderful work of another mummy. As to Gus, yes his weight is increasing. We've had a couple of operations this year and several hospitalisations from really bad viruses so they have set us back quite a bit on the weight department. He is definitely getting ahead now. We saw our paed for our weighing check-up yesterday and he is actually quite a bit heavier than I thought. He was 8.53kg bare weighed and 77cm tall. Yippeeee!

BTW, The article had listed some useful sites relating to tube feeding. I'd be happy to forward the list through to anyone who might be interested.

[Mikenzees mum]

you can get the tucker sling link on the Infantrefluxdisease.com web site its under products then generaly products ther is the tucker sling ar pillow and the comfy lift bed

Not sure on dates yet teresa we had an apointment with a noew dr this week for a second opinion and we see him again in a week and a half with the Gi as well hopefuly get some answers

[Mikenzees mum]

thanks kristyfor all that info your the best, im sorry to hear guss is still not doing well how old is he now sorry i forgot

[Kirsty EW]

Mikezee's mum, Gus is 22 1/2 months old. he he, pretty light for his age I know!

[Juliane]

Hi ladies! I found you're forum through Google, and I hope you don't mind if I ask some questions. I hail from the States (suburb of Philadelphia) so I hope I don't get anything lost in translation...

First and foremost, I give each and every one of you credit and kudos for all that you've been through. You're responses and your concern for each other is the reason I'm posting here.

My youngest (of 3), Jake, is my only son. He is 21 1/2 months old and weighs ~19.5 lbs (~8.9 kg). He was a good eater but always on the small side. Over the last six months, he has fallen off the growth chart and hasn't gained any weight. Our Pediatrician asked that we see a GI and a Nutrionist (scheduled for June 20th), however, in the meantime, we are trying our hardest to fatten him up. Our biggest challenge is that he has lost all desire to eat.

He is otherwise healthy (bloodwork came back "negative" for whatever they were checking for). He is active (very) and sleeps very well. He just doesn't want to eat. Typically he would eat yogurt, a sandwich, fruit, etc., but now, nothing. It's a struggle to get him to eat cheese. We put butter, whole milk, heavy whipped cream, anything fattening on everything, and he's not interested.

We've been having him drink Pediasure and Carnation Instant Breakfast (mixed with whole milk or Pediasure) per our pediatrician's recommendation.

What I'm struggling with is "why?" Is something wrong with Jake? What are the long term effects of his refusal to eat? I know it's not a texture, color, etc. condition, so I've ruled out (in my mind) some things, but otherwise, why?? And of course, I wonder about the feeding tube. This is what the Pediatrician told me we'd need to do if Jake doesn't gain weight fast (overnight via the nose).

I know no one who has had this problem - and there isn't much information on the Web for me.

Can anyone help? Please be as realistic as possible.

Thanks everyone!!

[scarlet121]

Hi there and welcome!

Like Theresa said few and far between at our bubs age. So I am glad that you have found someone.

First off, does he have any reflux issues that you could be aware of (sorry if I am barking up the wrong tree but my sons FTT was through reflux) ignore me if he has, but I see you are seeing a GI, so I think that is a really great place to start.

My son was a fantastic eater and of good weight till he was 9months and did a similar thing to your son, just basically stopped, and for him it was the reflux, initially he used food to soothe himself, he would eat to take the pain away, I beleive he realised that he was in pain so he decided not eating was the way. Because he was of good weight, it wasn't until he was 12months that we started seeing a pead, who then referred him to a GI at age 13months. He was tested and diagnosed at 14months, and we were put back on zantac, this maintained his weigh, but his eating was still really hit and miss, we wen't on prilosec (our losec) at 16months and we haven't looked back.

NOW I can see all his problems with eating, ear infections, sleeping, apnea etc... were related to reflux, because although they didn't all go away overnight, they got better with the prilosec.

So having that med behind us is what helped us out of the FTT category. From what you are saying it sounds like you are doing everything to get the calories in, you are doing a good job. A lot of people don't even know to try that. So if you are going to a GI, and it is reflux, then the above reason could be why he isn't eating, and if that is the case medication for the reflux is what he needs.

Other things it can be are things like celiac disease, which could be what they were looking for in his bloodwork. Esinophillic Esophagitis, which is basically an internal allergy and the only way to diagnose this is with a endoscopy with biopsy, this is rare, but becoming more prevalent these days.

The GI will probably ask a lot about his bowel movements, this could indicate other diseases that he could have and why he isn't gaining.

But, and this is just me, but in my expierience babies have a reason for being FTT, hopefully the GI can help you work that out.

I wish I could tell you WHY Jake, I often think the same of Parker, but again there will be a reason why. WIth the tube feeding again I only have the expierience with refluxers (and Parker has never needed one) but generally they are a good thing, if not a little annoying, a lot of children do really well with them, but sometimes with a refluxer they don't do so good cause although they are getting it in, they reflux a lot on it.

I know I will probably get told off, but here are some tips for tube feeding
... links edited out, refer to forum guidelines.

Good luck!

[Juliane]

Thanks for the feedback girls, and thank you so much for the Web sites. Having to wait six weeks for the GI and Nutrionist appointments is making me ill.

Jake was born via c-section and was "normal" for all ratings. However, at four weeks, he had an incredibly high fever which landed us in the hospital, which in turn caused him to stop breathing. He was revived and we were sent to DuPont Children's Hospital in Delaware (one of the country's best children's hospitals). We spent the night in PICU then the remainder of our stay in isolation. He ended up being diagnosed with meningitis (not spinal though - thank God).

But honestly, that's all that I'm aware of. When I think of reflux, I think of pain. I don't see him in any pain. He was breastfed and bottlefed with formula, but he's always has been on and off Pediasure to gain weight (I have hypothyroid so my breastmilk supply was always out of whack). Speaking of the hypothyroid, I can assume they (the Peds) also test for this (duh - guess I should ask).

Is it possible that he has reflux and I don't know about it? I'm also assuming they tested for diabetes because when I researched some of the common terms from this forum, that kept coming up.

I'm not resigned to the feedtube, but part of me would be relieved if he were put on one for the mere fact that he needs the calories, fat, nutrients. I'm afraid if we battle for the next 2 years with solids, he'll pay when he's a teenager. I'd rather suck up and deal now for his benefit down the road.

Is it bad? Learning curve on both our parts? Typical length of time used??? Oy. I have so many questions....

Hope your kiddies are doing well. I hope I'm not coming off selfish.

Thanks girls!!

xoxo,
Julie

[scarlet121]

Julie it is so hard because it depends on why he is loosing weight, there are heaps of reasons, but stopping eating is an aversion of some type, the old adage a child will never starve himself is not always true for some kids.

Again I can only use reflux as an example it is all I know, but here the tube is sometimes good and bad, I know when I first thought about tube feeding I thought it would be great because they are getting the nutrition and at least you know, but in reflux cases some do great and some do bad, they still vomit or are in more pain cause they have food in their tummy.

Is it bad to want to have him eat and gain and then take it away, of course not, I think all mums would do the same thing, but the tube could cause problems with him feeding himself later in life and that leads to lots of therapy, some kids have it a month or two, others have them for years. And it wont solve the reason of why isn't he eating in the first place KWIM?

Reflux is pain, so it doesn't fit that your little one has it with no symptoms, but it is possible still.

Loosing weight when they are eating fine has a lot more causes it could be absorption problems or different diseases etc... but to stop eating, makes me think there is something going on, maybe even pain etc.. for that to happen.

Have you thought about a feeding therapist (or is this the same as a nutritionist) and with the wait 6 weeks is quite a long time, is there anyway you can ring and see if they can put you on a cancellations list?

Good luck again!

[Mikenzees mum]

Mikezee's mum, Gus is 22 1/2 months old. he he, pretty light for his age I know!

oh i wasnt meaing, lol i get sick of being told how tiny kenzee is she is TINY TINY girl LOL I just couldnt remeber how old gus was thats all

[Juliane]

Hi Girls.... Rachel - you nailed it. They're checking Jake for Celiac. They took blood to check for the Ig Antibodies, then we're waiting to get scheduled for the biopsy via endoscopy. The GI really thinks it celiace because Jake "flatlined" on his weight right about 6-months, which is typical for when I introducted Cheerios (cereal) and bread.

Crazy. Now I have to maintain a diet which may be causing his malnourishment for up to eight weeks so I don't skew the results of the biopsy.

The other thing the GI said could be in issue, either related to Celiac or standalone, is a zinc deficiency, which greatly reduces the "want" to eat because it completely dulls taste. We still are waiting for those results.

Regardless - we're on status quo until the biopsy. In the meantime, she gave me hints to fatten him up: margarine and olive oil on everything; and add nonfat milk powder to whole milk (dry milk) - basically it's a cheap way to make at-home Pediasure.

Thanks for kind words and help. I'll keep you posted!!

Julie

[scarlet121]

Good luck Julie, I hope that the biopsy reveals some clues as to what is going on. My brother in law is celiac and things have changed so much and so many people cater for gluten free, and there is a whole gluten free section now, which makes it a lot easier. We have been gluten free with Parker for a while, and it wasn't as hard as I thought it would be.

Great advice on trying to fatten him up, we have done the same thing and it works great. Keep us posted on how he doesn.

Coincedentally my little one is having another endoscopy July 2nd.

[Missy]

Hi all.

Just wondering if anyone has heard from Kristy about Gus and how he is going. Im really abit worried as she has only came on once to let us know how Gus was after his op!! Id really love to hear from her. If you can reach her can you ask her to mail me please at
julie-matt@hotmail.com

Thanks