considering a G-tube for my son, pros/cons?

Shanteldanna - posted on 11/13/2012

My 2 year old was born with renal dysplasia and MCDK. He has 30% function of 1 kidney. He was born in april 2010, and weighs 26 lbs. He eats pretty normal. As much as I would expect a 2 year old to eat. However, I am told it is not enough because he has not grown for 4 months. It my son did not eat, or take his medicine I would be all for the use of a G tube. However, I am not sure of the complete connection between calories and growing taller. I an see where a G tube would be easier for those who have problems with meal times. I guess I am just wondering if I should consider it. I really do not like the idea of having more holes in my kid. Mind you, he reminds me of the little boy off of Daddy day care, screaming until he is given the money, running non stop. He is the epitome of active. I guess any advice or thoughts would be great.

Danielle - posted on 08/15/2012

hi nadia, my daughter is 4-1/2 yrs now and has been exclusively tube fed since birth. i would suggest offering her food anytime you have food or another family member has something. food is such a social experience too, so mealtimes have to be inclusive for her. a plate of food for her too. no expectaion to eat it, but kids are parrots! she will taste and tasting will help her get over any oral aversion. and dont forget to cheer her on alot! make big pieces she can suck on, and thick liquids like yogurts and cour cream, cream cheese. something you can get a smear of on a spoon that she can lick off. you have to start small, find flavors and textures she likes and expand on that. it will get better but this is a process that will take years.

i refuse to be pushy on food. i do not want food to cause her or myself anxiety. i expect to tube feed my daughter until she is 6-7-8 maybe longer. i am not in a hurry. food should be enjoyed
and really with all the other things that cause her problems with her syndrome food should be the least of the worries. everyday my daughter eats more and more, she asks for food " i hungee mommy" all the time, she is a totall mooch. loves mcdonalds. i always say she is the most expensive kid to feed who doesnt acutally eat a whole meal. it will get better for you and your daughter, relax and make it fun and social, encourage and cheer her on she will get there when she is ready.

Nadia - posted on 08/15/2012

hi heather,
my 2 years daughter was born with hyperinsulinise ,her eating was well untile she started a medicine called diazoxide ,she refuse eating little by litttle untile nothing at all so they place a g tube for her to get her needs , when she turned 1 year she had surgery pancreatectomy and after she stopted all the medecine she had before , my hope now as mom is to helpe her start eating by mouth i am having diffeculties wiith her ,if there is any tips please let me know

Felicia - posted on 09/04/2009

My daughter has a feeding tube. she has had one since she was 4 months old. My daughter cannot eat by mouth, so the g-tube is her primary feeding source. My only con for the g-tube is research and ask questions on the brand to use. I have used the BARD button and the Mic-key. I love the Mic-Key because it is filled with water compared to the BARD which is hard plastic. The Bard could last longer but if not removed properly could cause stomach damage. My daughter's stomach was ripped when she went in to get her g-tube replaced and had to have surgery. She lost 1 in of her stomach, for her size that was a lot. Then we switch to the Mic-Key. The Mic-Key is easy and I was trained on how to replace it at home. I can now change out her g-tube with NO problems. She has had her g-tube for 16 years now and that was the only problem. I would not recommend the BARD button.

Ann - posted on 08/31/2009

My son has had a g-tube since he was a year and a half old. I did everything I could to try to get him to eat and drink. We would be in the hospital every month for a week because he would dehydrate. I wanted to try to do it myself. Once I gave in and got him a g-tube so much stress was lifted from me. It was amazing! I didn't have to worry about him eating or getting dehydrated I could just push liquid through his tube and he would be all set. He also has kidney disease so he takes lots of medication which he would never take by mouth, all goes through the tube. It has made his life and my life much easier. I never have to worry about him getting enough to eat or drink now. Good luck

Shayna - posted on 08/30/2009

My 3 year old daughter has biliary atresia, which is a rare liver disorder. She got a g-button when she was about 13 months old. I haven't really had any major problems with it. Her's is to give her medicine through because she won't take it orally. If she doesn't want to eat, which is rarely the case, then I can feed her through it as well. They are more prone to catching infections since it is an opening into their body. My daughter had caught MRSA at her g-button site. It has come out about 2 times, but I learned how to put it back in or replace it.

Connie - posted on 08/26/2009

Our daughter who has cerebral palsy was severely underweight and the doctors kept wanted us to do a g-tube. Angela loved to eat and she just couldn't get in enough calories. Finally we had a g-tube placed with no fundo and we were just so surprised at how well she has done with the g-tube. Now we don't have to spend so much of our day trying to get in calories and it is so easy to give her meds. We wish we would have done it sooner. I hope our story helps a little, the g-tupe has made our life so much easier.

Elizabeth - posted on 08/25/2009

My son had his fundo and g-tube inserted at the age of 10 months old. I can tell you that this was the best decision to make for him. He is still on the low side of percentile in weight but that fear of my son aspirating is not completely gone because he aspirates his saliva but for the most part it's not as big of a worry for us. I can also say that if it wasn't for us deciding to this for my son we would have never found the other medical problems he had at that time, which was corrected by surgery. All I can say that its a blessing for the g-tube because my son is here today now getting ready to turn 3. Also I want to include this if you do decide to do it, and when he is being fed please be sure to keep him propped up because the risk of pneumonia is higher.

Heather - posted on 08/25/2009

My daughter has a feeding tube and its the best thing ever! It did take a bit of getting used to but you can "plug " your child in and let the pump feed them and you can get on with your dinner at the same time! It definately takes away the worry of if they are eating enough and any nasty tasting medicines can go through the tube without any problems of them getting spat out!

Just be aware although the drs say the tube is only as a back up - eventually it will be the only way he/she is fed. My daughter had a fantastic appetite before her tube but they wanted to "build her up" for surgery. Its been 6 years now and she eats very little orally. - Just be prepared for that. Hope this helps x good luck

Jennifer - posted on 08/21/2009

My 6 year old has a g-tube and it has been a lifesaver. We also do feeding therapy to strengthen the muscles of his tongue and give him better movement of food. You might also ask about being referred to feeding therapy (speech therapist) to help.

Heather - posted on 08/20/2009

That's what I'm hoping nor Maureen! We're supposed to feed him for 15-30 mins and the rest goes through the tube.... talk anbout a big change from 2 hrs per meal!!!!

Maureen - posted on 08/19/2009

Heather,

I'm glad you son is going to have his g-button done so quickly. Once you both get use to using it, you won't believe how much stress will melt away, not only for your son, but for you, too! I was surprised when my oldest son had his surgery way back in 1989 that the stress feeding him caused all of us. Even the doctor mentioned how much better I looked about a month after the surgery! Good luck!

Carol - posted on 08/18/2009

What side effects? My son takes it four times a day!

Heidi - posted on 08/17/2009

hey there my son has downs syndrome and has had a g-tube for about 2 and a half years he has what they call aspiration which in understanble terms is when he has fluids by mouth it goes to his lungs instead of his stomach which caused pneumonia,chest infections etc so they put the g-tube in so it didn't have to pass his lungs these illneses caused alot of weight loss since he has had the g-tube he is now a healthy weight with only suffering the common cold and is also on a special liquid to help with his weight

Heather - posted on 08/16/2009

Thanks Everyone! We are going in foe the g tube placement on Sept 4th, 3 wks away EEK! But I'm actually looking forward to it- I think it's going to free up a lot of time and make for much more pleasant meal times!

Betsey - posted on 08/16/2009

I'm new on this site, however as a nurse and a grandmom of a baby who has challenges with Marshall - Smith syndrome I believe that the medical staff are on track. There are days that you will need back up. Judging from your photo you have another child who will need attention when you are busy with your 5 yr. old. Therefore the g-tube for back up can relieve the time issue on difficult days.

Terri - posted on 08/16/2009

Quoting Nola:

Hi Heather. My son is 13. He was diagnosed at 10 mos with cerebral palsy, reflux, a floppy epiglottis along with about a half a dozen more. They did a fundoplication and put in a g-tube. Now at first it was the "foley" catheter. It is a long yellow tube with a cap on the end. If you can help it, do not get this tube. There is a chance for the tube to back up into your child and puncture his liver or other organs. Also, your child can pull it out. My son also as gastritis so we have to "vent" him constantly to get the gas out of his belly. Basically just opening up the tube and pushing a little on the tummy to help get the air out. My son doesn't walk or sit up so he can't easily pass gas. We found that the "Mickey" button is much cleaner and easier to use. There is a "bubble" you fill with saline on the inside of the tummy and the sits flush against the tummy on the outside so your little one can't pull it out. There are Mickey tubes and catheters that you use to feed. It sounds complicated, but really it isn't. This is the best thing we could have ever done. And like I said, he's 13 now.

When my granddaughter got her g- button the doctors gave my daughter the foley tube and told her that it was only to be used if the button came out and that it was to keep the stoma open until a new button could be put in. We had so many problems with the mickey buttons leaking at the valve and  the balloon braking , we switch to the EndoVive button the tubing is longer, bigger in diameter and has more flexibility it's easier to get stranded baby foods to go through the tube and the button has a little bit lower profile then the Mickey.

Terri - posted on 08/16/2009

Quoting Jacki:

my daughter has had a gastrostomy button (im in aus so i think u guys call it a mickey button) for nearly a year and is exclusively fed and medicated through it. Although it does its job and is friendlier to use and change than the nasogastric she had for months before this, it has not stopped leaking since we got it, I believe this is not the norm but my daughter is now on medication to stop the stomach acid burning her skin as it leaks out, I have to change the dressing on it at least 3 times per day which is alot considering my daughter doesn't sit, stand or even roll. Its up to you but I wouldn't rush into it if u can avoid it.

switch to the endovive button it is better inserts the same way as the mickey dose.

Terri - posted on 08/16/2009

Quoting Jacki:

my daughter has had a gastrostomy button (im in aus so i think u guys call it a mickey button) for nearly a year and is exclusively fed and medicated through it. Although it does its job and is friendlier to use and change than the nasogastric she had for months before this, it has not stopped leaking since we got it, I believe this is not the norm but my daughter is now on medication to stop the stomach acid burning her skin as it leaks out, I have to change the dressing on it at least 3 times per day which is alot considering my daughter doesn't sit, stand or even roll. Its up to you but I wouldn't rush into it if u can avoid it.

switch to the endovive button it is better, Inserts the same way as the mickey dose.

Terri - posted on 08/16/2009

Quoting Nola:

Hi Heather. My son is 13. He was diagnosed at 10 mos with cerebral palsy, reflux, a floppy epiglottis along with about a half a dozen more. They did a fundoplication and put in a g-tube. Now at first it was the "foley" catheter. It is a long yellow tube with a cap on the end. If you can help it, do not get this tube. There is a chance for the tube to back up into your child and puncture his liver or other organs. Also, your child can pull it out. My son also as gastritis so we have to "vent" him constantly to get the gas out of his belly. Basically just opening up the tube and pushing a little on the tummy to help get the air out. My son doesn't walk or sit up so he can't easily pass gas. We found that the "Mickey" button is much cleaner and easier to use. There is a "bubble" you fill with saline on the inside of the tummy and the sits flush against the tummy on the outside so your little one can't pull it out. There are Mickey tubes and catheters that you use to feed. It sounds complicated, but really it isn't. This is the best thing we could have ever done. And like I said, he's 13 now.

When my granddaughter got her g- button the doctors gave my daughter the foley tube and told her that it was only to be used if the button came out and that it was to keep the stoma open until a new button could be put in. We had so many problems with the mickey buttons leaking at the valve and  the balloon braking , we switch to the EndoVive button the tubing is longer, bigger in diameter and has more flexibility it's easier to get stranded baby foods to go through the tube and the button has a little bit lower profile then the Mickey.

Terri - posted on 08/16/2009

My granddaughter who was a preemie 33weeks 4 days had a g-tube put in when she was about 2 1/2 to 3 weeks old since she has a condition one of several hypoxic ischemic encephalopathy(HIE kids have weak or nonexistent suck, swallow, and gag reflexes).By 8 to 12 weeks old she had a g-button put in and a Nissen fundoplication done. she had to have the Nissen done because when she refluxed she would aspirate,and get aspiration pneumonia.

She also has the microcephaly and cystic periventricular leukomalacia (CPVL for short)and asthma plus a few more problems. Any way the button was a god send, mad it a lot easier to feed her she was getting bolus feeding but now she has a kangaroo pump and she will be 7 yrs old next week.

Karen - posted on 07/30/2009

I dont have much experience, but a friend's little one has had a g-tube put in about three months ago and loves it. Her little one was in a car accident at 18months and has all sorts of complications.

Becky - posted on 07/25/2009

My son's g-tube was placed within hours of his birth since his esophagus could not be connected to his stomach. He is now 2 years old and though he now has an "esophagus" he is still learning to eat orally. Glad you made the decision to get the g-tube because you think it is the best for your son. It will definitely help make oral feedings a more positive experience. It is important to continue oral feedings just with lots less stress. Since he has reflux it would be beneficial to look into getting the nissen fundoplication done at the same time. Also, it shouldn't take 6 months to be able to switch to a Mic-Key. Usually just a few weeks is enough as long as he heals okay. As someone else mentioned, make sure to get a spare Mic-Key to keep on hand and some red catheters (slightly rigid catheters that can help dilate the hole if granulation tissue is a problem when the tube comes out).

Good luck!

Stacy - posted on 07/24/2009

My 5 year old daughter also has Microcephaly, she has had a G-tube since she was 9 months old. The g-tube really helped to get her weight up not to mention the ease of giving medication. She has a feeding team that she see and they mentioned that if her weight got to low she would in return eat less. Also proper nutrition help promotes growth in other areas (learning, dev. etc). It was definitely the right decision for my daughter. She has now progressed and only gets on tube feeding a day. Let me know if you would like to talk more.

Viola - posted on 07/23/2009

My son has had a g-tube for 8 years now. I consider it the best thing I could have done for him. He gets better nutrition from the tube feedings than when he was eating by mouth. He was aspirating food into his lungs and was always sick and now he has only been sick once since the g-tube was placed. Good luck with whatever you decide.

Sherrie - posted on 07/23/2009

my 10yr old son has microcephly with low tones and a eating problem we put him on pediasure to get food in him didnt go for the tube and doing better but still dont eat much but in time they tell me that he might need on then he can have it

Heather - posted on 07/23/2009

hi ladies! We've decided to go w the tube- it's what seems to be best for Jacob, and that's what's most important. I appreciate all the feedback and support!

Heather - posted on 07/23/2009

i know its been a great thing for my daughter Nataliya. She's had her's for 2 1/2 years. when shes sick and needs to take meds its been a blessing. Its also helpped when she doesn't eat for us.

Jamy - posted on 07/23/2009

my son Charlie has reciprocal translocation of chromosomes--his chromosomes are switched up. global developmental delays. only eats pureed foods and still drinks only from a bottle at age 6.
as far as the g tube. If you're speaking of a nasal gastric tube, my 13 year old daughter suffers from crohn's disease and was put on one twice to increase her weight and nutrition. She did really well on it except it got clogged up once and I had to take her to emergency room to have it replaced and that wasn't fun.. make sure you keep it flushed well. Good Luck to you.

Tanisha - posted on 07/23/2009

My son has had a g-tube since he was two months! He's 7 ans a half. He's done really well with it. I can't tell you any complications because he's never had any. He eats 5 cans of Nutrin jr. with fiber and thats it. nothing by mouth. If he needs it for nutrition by all means do it for him. I change it out every few months. I'm not a nurse just a mom who loves her little boy and is willing to do and learn anything for him.

Jacki - posted on 07/22/2009

but I must say it is great to be sure that the meds do get in when u need them too!

Jacki - posted on 07/22/2009

my daughter has had a gastrostomy button (im in aus so i think u guys call it a mickey button) for nearly a year and is exclusively fed and medicated through it. Although it does itss job and is friendlier to use and change than the naso-gastric she had for months before this, it has not stopped leaking since we got it, I believe this is not the norm but my daugter is now on medication to stop the stomach acid burning her skin as it leaks out, I have to change the dressing on it at least 3 times per day which is alot considering my daughter doesnt sit, stand or even roll. Its up to you but I wouldnt rush into it if u can avoid it.

Amanda - posted on 07/22/2009

My 7 month old has a G-Tube and while I can't say I love the thing, it does it's job. He has severe reflux, and had the tube put in during his funoplycation. The only thing I don't like is that it's hard to dress kids with the tube, and I'm a little squeamish so it's hard to deal with sometimes.

Holly - posted on 07/22/2009

Hey! My daughter has medical issues and Asperger's. We had a hard time getting her to eat because she would get so constipated that she had no room. They did an "Ace Proceedure" and it has helped tremendously. It's like a G-tube but they go through the appendix. We don't use it for feeding, we use it for cleaning her out. Her appitite improved and she is starting to look and feel better. I HIGHLY recomend it. Best of luck to you!

Leslie - posted on 07/21/2009

Our son has had a feeding tube for about a year-we are glad we did it but had problems with the balloon always failing (supposed to last about 3 months) and his were lasting on avg 9 days. We went to the one without the balloon that has a "mushroom" shaped end on the inside to keep it in. These are replaced by the Dr. every six months which is fine with me cuz I wasn't especially fond of changing them. Great if they are on meds and especially when they are sick. He also had fundiplication done at the same time as his g-tube to prevent his acid reflux. Good luck!

Della - posted on 07/21/2009

We had a g-tube placed in our son in 2007. It was hard at first, but over time it was the best thing for him. He has double his weight. His reflux is under control. They wrapped his stomach around his eshopus(sp). We put all of his meds through the tube now we know he gets all of them. His seizures have gotten better. Just be careful of certain meds they can block the tube. He cannot haddle bollus feeds ( when you pore milk straight into his somach) so he has a pump to slowly give his feed at night. Its been great and very glad we got it. Della

Christa - posted on 07/20/2009

hi Heather my daughter has had a g tube for aobut a year now and it has helped her alot. We were in and out of the hospital almost every week getting her fluids becasue she wouldn't eat. now we have only been in the hospital with her a couple times in the past year and it was for other issues. Nice to be able to just give her food when she refuses to eat.

Michelle - posted on 07/20/2009

hi heather...my son is also one and has had the tube from 2mo old...he are having a problem with the mic-key though and the people at kimberly clark are amazing and replace the tubes next day air but apparently we were told less than one percent of the population are not compatible with the balloon and my son fits that category...we can't go 2-5 days without replacing it...we are exploring other options at this point...also if you can press having the nissen at the same time as the tube placement i would suggest it because we had the tube placed and just like all of the therapist emphasized he needs to have another procedure for the nissen and we could have avoided it with having it done the first time...we tried to manage the reflux with meds but it just can't be done...also anybody out there on reglan...i don't know if you have heard of the new fda regulations on it but they have placed the severe side effects on the bottle now and my son was just taken off due to the effects and he went through withdrawls...it was insane...has anybody else had an issue with this? thank you michelle

Tisha - posted on 07/20/2009

My son is 1 and has had a g-tube since he was a month old. We love it. It makes feedings so much easier. I'd reccommend you ask your surgeon for a mic-key button though. It's so much easier than the peg types or the foley catheters. Also, ask for a spare button, so you can change it out at home. Otherwise when it comes out (and it will come out) you can change it at home instead of taking him in to the hospital. There's actually a really good g-tube changing video on youtube if you search for it.

Carisa - posted on 07/20/2009

My daughter is 10 and has had a g-tube since she was 4 months old to help with weight gain. I am forever thankful for it when she is sick or having a bad day eating, if she goes all day with not much to eat I can catch her up on calories while she sleeps :)

Kathy - posted on 07/19/2009

MY daughter is 10 and has had one all her life....it has been an absolute life saver at times!!!

Heather - posted on 07/18/2009

Thanks everyone! I really appreciate the feedback. We've decided we're going to do it, hopefully sooner rather than later. It will be really nice to enjoy meals again, and not worry so much about his nutrition and weight. We have to have the g-tube first, and once the puncture has healed we can get a mickey button, apparently takes about 6 mths or so. it'll be nice to get meds and food into him when he's sick as well. The nurse showed us all the material at the appointment, doesn't look difficult at all.

Nola - posted on 07/18/2009

Hi Heather. My son is 13. He was diagnosed at 10 mos with cerebral palsy, reflux, a floppy epiglottis along with about a half a dozen more. They did a fundoplication and put in a g-tube. Now at first it was the "foley" catheter. It is a long yellow tube with a cap on the end. If you can help it, do not get this tube. There is a chance for the tube to back up into your child and puncture his liver or other organs. Also, your child can pull it out. My son also as gastitis so we have to "vent" him constantly to get the gas out of his belly. Basically just opening up the tube and pushing a little on the tummy to help get the air out. My son doesn't walk or sit up so he can't easily pass gas. We found that the "Mickey" button is much cleaner and easier to use. There is a "bubble" you fill with saline on the inside of the tummy and the sits flush against the tummy on the outside so your little one can't pull it out. There are Mickey tubes and catheters that you use to feed. It sounds complicated, but really it isn't. This is the best thing we could have ever done. And like I said, he's 13 now.

Jo Anne - posted on 07/18/2009

as a nurse of special needs children, I find it can be useful while you are trying to teach and encourage your child to eat orally. You can enjoy feeding orally and can make sure nutritionally through g-tube they get what they need. As long as you continue to feed orally. Eating orally right now is a lot of work and a chore for him. If you had the g-tube you can make eating orally fun without the stress.

Heather - posted on 07/18/2009

we looked at doing the fundo, but the dr said at this point he hopes to control the reflux with an increase in meds. We're going to give the meds a shot- we saw another gi doc who was very bad and didn't give us the options that we talked about yesterday. thanks for your advice!

Danielle - posted on 07/17/2009

my daughter is a chronic aspirator and had a g-tube and fundo done fat 3 mo of age, she is exclusively fed thru it. i have had no major issues with it. the fundo was for severe gerd she had as well. it has relaxed enough she can get things down into her tummy but nothing comes up.

Tiffany - posted on 07/17/2009

my son has had a g-tube since he was 7 months old... i love it... when he wants to eat we feed him but when he is sick or does feel like eatting we feed him by tube...and with the g-tube they can do a surgery while doing the g-tube and he will not have reflux... ask the dr about it...