Feeding Gastrostomies (G-tubes)

My son is autistic, has mild CP and wears leg braces in addition to having a g-tube. He is very uncomfortable being approached by other children with questions, even if I answer for him. Sometimes he just wants to go to the pool and relax and be left alone. No one else there is having to discuss their body parts. I know kids are curious, and we are matter of fact about it, but my son tires of the questions and it certainly doesn’t help the social problems of autism for him to be singled out as different by other kids, “special” or not.

Never mind that at pools that don’t know us someone always walks up and sees his bandaged g-button, assumes it’s an open wound, and starts off by saying “He can’t swim with that.” They don’t know what it is till we explain, and then it’s ok, but until then my son hears that he can’t swim. I have to do what’s best for him, not for the other kids, and right now that means minimizing the differences so he can swim in peace and not want to leave just because he’s being overwhelmed.

Kelly

VLCAD mom

My son had his mic-key g tube put in two years ago (at age four months). Nothing has to be done to it when he swims. It looks a lot like the part you blow into when inflating a beach ball. It took me two years to get up the nerve to change his tube, but now I do it and it is NOTHING! It is so simple! A little advice, carry an extra one with you at ALL times. If it comes out, you should get the new one in him ASAP (or else it is difficult for you and painful for him, the site actually starts closing!)

Gina

VLCAD mom

My son also has a mic-key. How often do you have to change it? His can go about 4-6 weeks and it starts getting clogged up. He has to be sedated and screams hysterically when the doctor changes it, his site also requires frequent cauterizing due to granulation tissue, and he really hates that. We used to do those things ourselves but it took two people to hold him down. We’d rather he sees the doctor as the bad guy, not us. Some nurses have told me to put coke through it but that didn’t seem to help. It could be his formula. It tends to clump easily. If you have any ideas for how to keep it from getting clogged, I’d appreciate it. Thanks.

Kelly

VLCAD mom

I bet the pain your son is experiencing when his tube is changed is due to the granulation tissue. Otherwise it should be fairly painless if all the water is taken out of the balloon. Our daughter also used to have this problem. One time years ago when her doctor changed the tube he actually went into the hole a teeny bit with the silver nitrate stick and she has not had any problems since! Also the fit must be near perfect…if it is too long and moves up and down a lot this is what causes the granulation tissue to rise. I am so sorry it is such a big deal for him…one more thing they must tolerate…are you flushing with warm (almost hot) water frequently? Our daughter’s last about four months. Hope this helps.

Lisa

VLCAD mom

My daughter has had her G-Tube for four years She started with a mic-key button but we had problems with the tubes becoming clogged and breaking so decided to try a MIC-G which dosn’t have this problem, providing you flush her tube occasionaly and change her balloon water weekly. It lasts for up to six months. She also finds this tube more comfortable against her tummy. Our problem starts when her tube needs changing. She has a very good stoma site and has never had an infection. She has the occational granulation problem but this is soon cleared up with treatment (I use sofradex eye or ear ointment).When we change her tube she needs to be held down and because she is so tense it makes it harder to pass the tube. It has become worse since last year when her balloon popped during the night. Her tube came out and by the morning her stoma had almost closed and i couldnt pass a tube at all we ended up in hospital for the day to have it reopened, but because of her chest problems they couldnt sedate her and it took three people to hold her down and several attempts to reopen the site. Since then it seems more difficult to pass a tube and she frets about her balloon popping all the time asking me to check it three or four times a day. She also hates having her stoma site cleaned and has to be held down and comforted. Regarding tubes getting clogged: I have also heard of Coke being used and you can also use a small amount of lemon juice plus regular flushes are a good way of stopping clogging and a good way of getting extra fluids into your child. I hope this is of some help.

Clare

GA2 mum

I talked with a Zevex rep here in Austin and they have a button that might solve this problem – it is made with a different material (silicone?) instead of rubber? Don’t know much but we are going to try it and I will let everyone know the results! The Zevex pump is the greatest thing since sliced bread! We do use the backpack also at night though – I fill the bag and turn it upside down to prime it – this gets all the air out of the bag – then put it on our daughter’s bed. That way if she needs me (she is upstairs, I am down) she can get out of bed and carry the pack. Plus I am hoping one day she will learn to wake up to go to the bathroom in the middle of the night – is anyone else getting frustrated with their “big” kids having to use pull-ups still? With all this liquid I sometimes feel like their bladders will never be trained! P.S. That is what is so great about the Zevex pump and backpack – The video that comes with it shows kids rollerblading, etc. and hanging upside-down on the jungle gym!

Lisa

VLCAD mom

We do the same. We just attach the pump (very easy to do) to the IV pole at night. While visiting last week, we just stood the backpack up in bed (propped it against the bed rail). It worked great. I think it is impossible to say if having a gtube would have prevented a hospital stay. You might have been able to put him on a slow drip at the first sign of stomach troubles, and this might of saved you the hospital visit. Having the calories he needed, given to him VERY slowly (to give the tummy a chance to rest, as opposed to a bolus feed from a bottle) might of done the trick, but if his diarrhea was severe enough, he would of need a total rest from food and just IV glucose to get his electrolytes back in order. My doctor wants our son to continue having his Portagen formula throughout a hospital glucose IV–stomach virus ordeal because she said that it is vital he gets the MCT oil that is on the Portagen (he is VLCAD not MCAD). A few times he was so sick that while at the hospital I took him off the Portagen for a SHORT period to give his gut a rest. The using his g-tube I would ever so slowly start to drip it into him. That is why I am thankful for the g-tube, because I am in control during a crisis. I am not saying a g-tube is the right decision for every family/child. But for him, it was a good choice, especially because he had MANY, MANY stomach viruses during his first two years. I did notice from reading these e-mails that most MCAD children do not have g-tubes, while it seems that many VLCAD and LCHAD kids do. That was interesting to me.

Gina

VLCAD mom

At the first sign of illness I hook our daughter up to a continuous drip of her formula. This has kept her out of the hospital on numerous occasions–if the gut can handle it I have been told that this is better than IV. Of course if vomiting or diarrhea is not controllable, dehydration will come quickly, then IV for sure. Each illness may be different.

Lisa

VLCAD mom

Our son has a mickey button. He started with this at 1/5 yr old and all it kept doing was popping (3 days/1.5 months). So the Doctor said we would try a Bard and we tried two types. We found them not very good as he moves a lot in his sleep and kept coming unconnected and he was not getting all his feed during the night. So we fought to get the mickey back. We have it now and it still pops (5days/ 2 months). Can anyone help with a different make of button?

Belinda

LCHAD mom

We have the Bard button and we had the problem of it coming disconnected also. We started putting split gauze beneath the button and then taping the tube to the button and gauze. It has not come out since. It’s been two years.

Kimberly

LCHAD mom

How much does your son take at night and could you give us your feeding times. Our son is doing 800cc over night and we have not been able to find a company that has the little pump/backpack with a feeding bag that would hold a large feed at night. We may need to talk about changing his times around along with amounts.

Teresa

LCHAD mom

I just wrote about my strong feelings for g-tubes, but I forgot to mention that our son eats a normal (low fat) diet, by mouth. However, the amount of formula he would need to drink is A LOT (400 cc every 4 hours), and I don’t know how you can get a 2 1/2 year old to drink when he isn’t thirsty! Besides, it tastes nasty (oils and carnitor and vitamins mixed in a water and powder solution…yeck! Never mind how it could damage his teeth, especially at night). For us, the g-tube and the backpack-feeding pump have been a true blessing. We love them and he is doing great. His CPK’s are perfect too.

His doctors (Dr. Roe from TX and Dr. Seashore from Yale…both specialists in FODs) agree that continual nighttime feeds, are not only helpful now (for various reasons) but they are also helping their chances for stronger muscles (less breakdown) in the future. It was explained to me that many times a child will deplete their glucose store (VERY easy to do…happens very quickly) and then we feed them to restore it…so their bodies are always playing “catch up.” With frequent feeds (He now wears an adorable little backpack hooked to his g-tube that feeds him 400 cc every 4 hours — it takes 1 hour and 15 minutes to run it into him) their bodies don’t have to play this game that is damaging.

The backpack looks just like book bag backpacks – no one knows what is going on, and I can relax and not have to worry about getting enough food into him…especially on hot days when all he wants to do is play outside and not eat or drink much. I just throw his backpack on and he goes about his life. He can do ANYTHING in it (except swim!). We tried different backpack feeding pumps and the ZEVEX is the absolute best – there is no comparison. It is so simple to use, that my 9-year-old hooks him (2 1/2 VLCAD) up all by herself – sets the pump’s computer and everything. I am just so excited about this pump, and would not of known about it if it was not for other FOD support group members…so I just wanted to pass it along too! 

Gina

VLCAD mom

Our son eats normally during the day and the overnight feeding is to prevent periods of fasting rather than to provide supplemental feeding. I realize that he is quite unusual in still using an NG tube but as it works so well for us we have stuck with it. We did consider a G tube when he was a baby but it wasn’t warranted at the time (because he was so well) and we haven’t really felt the need since. Just as a matter of interest, of the UK families who use G-tubes (about half) many have had problems with them – often from the time they were placed – there seems to be quite a variation in the expertise available in the UK with some centres doing better than others.

Pam

LCHAD mom

We had our son (LCHAD) on an NG tube for about six months, when he was about one year old. It is doable and becomes easier with practice. Don’t be intimidated by the procedure, you will become very comfortable with it. Please be encouraged that the NG tube is not painful after it’s inserted. He has since then had a G-Button. The G-button is very easy to take care of also, even with swimming and other activities. It has been a hassle at times, obviously, but we know he is doing so much better because of that constant nighttime feeding. Otherwise, he gets achy and lethargic. We only used the cornstarch when we were in the process of moving. His formula at night includes: one cup of polycose powder, two T. MCT oil and two cups of skim milk. He will be starting 1st grade this year, so we will make sure a mixture of cornstarch and fructose is added before he takes off for school all day (along with making his own lunch). We believe that the continual infusion at night has enabled him to have a sustainable, normal level of activity all day long. Hang in there, you will have your ups and downs, but you’ll make it.

Scott

LCHAD dad

NG Tubes/Buttons

Ethan has a Microvasive button. Instead of a balloon, it has a hard plastic piece behind it so it absolutely cannot come out! The outside looks like the part of the beach ball you blow up. It means we have to have it changed every year but as much as Ethan plays with it and pulls on it, we would be going crazy with the other kind. You might ask your doctor about this if it’s something you think might be right for Rachel. Ethan is 17 months old so he plays with his a lot, but we’ve had it since March and have had no problems.

Mary Beth

MCAD mom

Jamie is 9 yrs old and G-Tube fed at 85mls per hour for a total of 20 hrs. This means she feeds right through the night via a flexi-flow pump that needs topping up every 2hrs 20 minutes with a 50 ml water flush every 4 hrs. Lewis (2½ yrs) has 4 X 250 mls in 24hrs. These are gravity flow feeds and take about 1hr 20 minutes ~ any faster for him and he vomits. With a 20 ml water flush before and after the whole process, it takes around 2 hrs. Emma the closest in age to your Nicolas, but still a lot older, is like Lewis ~ gravity fed 4x200mls per 24hrs. Emma was also tube fed at around Nic’s age and each feed with water flush would take around 20 minutes. But if night feeding is a real problem for you, but no night feeds represent a problem for your child, then my advice to you would be to ask your Dr for info about feeding pumps, work out Nic’s needs with your dietitian, set the pump at a suitable flow rate, switch on and away it goes ~ your baby feeds while you get some much needed rest with one ear ever open for the odd problem that can happen when feeding any young baby. Hope this may be of some help.

Woody

UK grandfather of GA2 x 3

Just thought I’d put my two cents worth in on the night feeding issue. Ethan has been on a pump for his night feed since his diagnosis at 7 months. He gets 40cc’s an hour for 10 hours. It’s wonderful. Once we figured out how to tape the connecting tube into his button so it wouldn’t pop out, we’ve had (virtually) worry free nights. Is there any reason why Nicholas couldn’t be fed with a pump? It would definitely be worth asking your doctor. I don’t know if feeding him 60cc’s in five minutes is very good for him but if he’s not spitting it back up, I can understand why you’d want to get it over with and get back to bed. If he goes on a pump at night, it might help getting him to take the bottle during the day because he won’t be used to getting it so fast. You might want to check and see if there is a feeding problems group in your area. Our local hospital has one. We haven’t been to it but I understand they discuss things like the problems you’re having getting him to take oral feedings and you might pick up some helpful ideas.

Mary Beth

MCAD mom

At school, the office secretary gets the feeding ready ~ attaches the formula bag to the pump and then Kyle plugs himself in and hits the start button. The school told us that “only a nurse” can administer the feeding so we got around that by teaching Kyle how to “plug in” and hit start. If there is a problem with the pump (beeping, etc) then the office staff problem-solves and if they can’t fix it, they call the school nurse. Actually, I’ve been sending Kyle’s feeding in gatorade so he is no longer using the pump at school. It has been a lot easier.

Michelle

SCAD mom

According to Public Law 94-142, the school system is supposed to provide the support needed for a child on a feeding pump. Medical problems are part of the child’s disabilities and the school system is responsible for providing a nurse etc. This may mean that your child will go to a school that is out of district but I would contact the Special Education Coordinator for your school system to discuss these matters as he/she is trained to explain and deal with these matters. Just because your child may not need to be in special education classes does not mean he/she does not qualify for special assistance. Medical needs are part of their learning needs. Your child’s medical needs must be met in order for him/her to learn in a least restrictive environment. Sometimes school systems get away with a lot more than they should with respect to providing for the medical needs of children. You are the best advocate for your child.

Beth Morley

I would strongly suggest a pump! And the only one I would recommend is the ZEVEX (link on the FOD website). Brett has one and wears it in a little backpack. Nobody knows that the backpack is actually a feeding pump! It is very cool looking. Then at night we hang the backpack on a pole (or screw the actual pump to a pole and hang the feeding bag on the pole) and fill him up! We have it figured out to go off at 3:30 am so when he wakes in the morning he is hungry for breakfast with the family.

This past week he has had a heavy-duty chest cold and refuses to eat anything. So, instead of being stressed out, we all went about our lives and he was fed 24 hours a day through his backpack.

It is expensive, so be prepared for a good fight. Zevex will provide you with a good sample letter to have your doctor rewrite and send to the insurance company. Our insurance company bought Brett one because I complained that the Kangaroo one they originally sent him was not suitable for a 2 yr old (it was too large and heavy for him to wear on his back). In regard to feeding through a tube, Brett vomits if it goes in too quickly. Also, I once remember a nutritionist telling me that feeding a child too quickly for a PROLONGED period of time can result to damage to the kidneys, but I think she meant setting a pump at too high of a rate on a daily basis.

Gina 

VLCAD mom