I have a 15 year old son with autism and cf. He has been struggling to gain weight since he was 7. He is 5ft. 3in. and weigh 72lbs. Recently the dietician said he may benefit from a g-tube to use at night to help. I am curious how this has helped with your children and what to expect with the surgery if we end up doing it. Even though he is 15, he is not that age developmentally. I am wondering how long of a hospital stay, how painful was the surgery and recovery, are they good about pain management? Any information or suggestions would be great. My son needs to be prepared in advance for things that will out of his routine. I just would like to make this as easy on him as I possible if we do decide to do this. Thank you so much, Janelle
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Concerned about getting g-tube for son
- Thread starter jshet
- Start date
mysticrose
New member
Hi Janelle,
Both my daughters have a g-tube. My oldest got hers through a complete surgery when they put in her port a cath and did a fundoplycation. She is a tough nut so for her pain management is really for our comfort because she hides it alot. I will say her nurses were quick with the morphine for the first day.
My second DD got her's with a scope. I can't remember the name of the surgery but it was done by the GI doc. Recovery was quick and minimal pain meds, she is a big baby so pain and her are not friends. She had a PEG tube that her sister later ripped out, it took quiet a bit of force to do it and as a result ended up with a mikey button alot sooner than they had predicted.
Both were out of the hospital with in a day of the surgerys. My oldest has had her's for quiet some time and at most will be 5 ft when she is fully grown maybe 5 ft 2. She is 13 now and about 4 ft 9. It hasn't helped her height but it has helped alot with her weight.
My oldest was resistant to the feeding tube at first but we just made a routine of it. Cleaning it daily, keeping it dry at first and making her feeding bags.
I highly suggest a belly band or something kinda snug on the tummy after he has healed and the pain is gone. My DD's started to slouch over because it felt weird having a tube hanging down at first. Even after it was changed to the Mickey button the band helped a bit. Now they are totally used to it.
I hope that helps some. It was a hard decision to make and we struggled for quiet awhile to make it, now looking back I wish I wouldn't have fought doing it for so long.
Jen. mom to 4. 3 w/cf and 1 lucky red head.
Both my daughters have a g-tube. My oldest got hers through a complete surgery when they put in her port a cath and did a fundoplycation. She is a tough nut so for her pain management is really for our comfort because she hides it alot. I will say her nurses were quick with the morphine for the first day.
My second DD got her's with a scope. I can't remember the name of the surgery but it was done by the GI doc. Recovery was quick and minimal pain meds, she is a big baby so pain and her are not friends. She had a PEG tube that her sister later ripped out, it took quiet a bit of force to do it and as a result ended up with a mikey button alot sooner than they had predicted.
Both were out of the hospital with in a day of the surgerys. My oldest has had her's for quiet some time and at most will be 5 ft when she is fully grown maybe 5 ft 2. She is 13 now and about 4 ft 9. It hasn't helped her height but it has helped alot with her weight.
My oldest was resistant to the feeding tube at first but we just made a routine of it. Cleaning it daily, keeping it dry at first and making her feeding bags.
I highly suggest a belly band or something kinda snug on the tummy after he has healed and the pain is gone. My DD's started to slouch over because it felt weird having a tube hanging down at first. Even after it was changed to the Mickey button the band helped a bit. Now they are totally used to it.
I hope that helps some. It was a hard decision to make and we struggled for quiet awhile to make it, now looking back I wish I wouldn't have fought doing it for so long.
Jen. mom to 4. 3 w/cf and 1 lucky red head.
Thank you so much Jen everything you said is greatly appreciated. One thing I do seem to see over and over on this site is that parents and adults wish they had done it sooner. I just want my son to be as healthy as he can be with as little pain as possible. Unfortunately he views pain from doctors. shots, blood work, ect. as personal. He does not get that it is to help him. So the fact that you said recovery is not that long makes me feel better. Thanks, Janelle
M
Mommafirst
Guest
It was the hardest decision we've had to make thus far. My daughter is 6 and had the tube placed just before turning 3. SHe's done well with it and is gaining on a normal curve these days, but I dond't know if we'll ever be able to get rid of it....she falls off the charts as soon as we try to wean her from night feeds.
I definitely think the tube is a good tool for kids who can't gain weight and it has added to my daughter's good CF health.
I wish you luck with making the decision. Whatever you decide I'm sure it will be what is best for your son.
I definitely think the tube is a good tool for kids who can't gain weight and it has added to my daughter's good CF health.
I wish you luck with making the decision. Whatever you decide I'm sure it will be what is best for your son.
Both my sons have had g-tubes for 8 years. They were placed the same day (back to back surgeries). Of all the CF related decisions we have had to make, this was by far the most difficult. My sons were 13 and 9 when they became very sick with a mycobacterium that was unheard of and therefore had no treatment plan. The thought was that as they become sicker, the extra weight would help sustain them until a treatment option was found.
A year later, the bacterium was erradicated in both boys. The decision to place the g-tubes proved to be the best one we've ever made. They still do feeds at night and hover near a good BMI. Life saving to be sure.
The pain was not too bad. Morphine was used for the first day, tylenol a day or two after that.
PM me if you have any questions! Good luck with your decision.
A year later, the bacterium was erradicated in both boys. The decision to place the g-tubes proved to be the best one we've ever made. They still do feeds at night and hover near a good BMI. Life saving to be sure.
The pain was not too bad. Morphine was used for the first day, tylenol a day or two after that.
PM me if you have any questions! Good luck with your decision.
S
sdelorenzo
Guest
I have an 11 year old daughter who was diagnosed with Aspergers last week. She got a g-tube at age 5. It has been nothing but an enormous blessing. Honestly, I don't even know if she would be here today without it. She went from negative 5% bmi and has stayed around 60-70% bmi since about 5 months after her procedure. It hardly takes a minute to set it up at night and that is all we think about it. It has helped keep her sooo healthy. She started to have lung problems at age 5 and immediately her pfts rose and have stayed high. She got nissan fundoplication surgery the day of her g-tube placement. She was home two days later asking to jump on the trampoline. I was so anxious and worried about the procedure. It was easy for her thankfully. You won't regret if for a minute when you see your son starting to get plump and healthy looking. Such a huge, beautiful change. She uses Nutren 2.0 for the formula and digests it very well. She doesn't need enzymes before or after her feeding since it is predigested. She did try a few other formulas before then and it didn't go as well. If he can just get the button placed first and not the tube that would be an enormous blessing. That would be VERY important to find a GI dr who would do that. My nephew and family friend both have CF and got g-tubes. They got the button placed and not the tube since they were older and it went much smoother.
Sharon
Sharon
I had a G-tube at 12 or so and kept it for about 6 years. At time I was in the hospital for a week. It may have changed some sense then (this was like 20 years ago..) but at the time It was a rather large incision centered just above the belly button (I think in my case they went in though old scar tissue rather then make more.). The G-tube was up and walking in a day or so and eating solid foots in two. Wasn't walking fast to begin with but they got me out of there rather quickly when I snagged a doctors tie pulled him down to my level and said send me home. I was fairly tired for another two weeks or so after, and was about a month be-for I could lay on my belly again. At I think 4 weeks or so after the surgery you go in and have the surgical tubing removed and the more permanent port placed in the opening. This event could be slightly traumatic depending on how it goes.. It was for me, screamed so much my PFT's took an incredible gain from the experience. The last plugs that I encountered using where not bad all in all. I could take it out and put it back in on my own should I want too, did it once my self. The last ones (sorry forget the names of them) where placed then a balloon on the end was filled with saline to hold it in, little KY and they slide right in, fall out on there own if the balloon breaks(and it will) or if deflated and left alone. I had some on going issues with a little stomach acid leaking for time to time, every so often I would roll right and dislodge the feeding line from the plug/port. So investing in a few small hand towels that can be wash and used to whip up the acid off the skin is a good idea, may need a cream if a rash comes from it but I never had that much issues with acid. I highly suggest you get a plastic cover to place over the mattress, I killed 2 via feeding the bed and not my self over night a few times. As far as pain, I do remember a bad trip on morphine. Best of luck with this and I hope that the suggestions help.
T
ToriMom
Guest
Hello Janelle!
I have a fifteen-year-old Autistic son as well! He does not have CF, but my 11-year-old daughter Victoria does--and she has had a G-tube for over nine years. I asked my son what he would think about getting a G-tube if he needed one. He surprised me by answering that his greatest concern about getting one would be the alarms/beeps from the pump at night. Alarms are one of his aversions. I was surprised that he didn't seem concerned about the pain of the procedure, but my son passed a kidney stone without a single tear shed when he was a toddler. His sensory perception is a little off so sometimes he tolerates pain very well, and at other times he is overly sensitive. I would ask that your son have his tube placed with plenty of anesthesia because my son also remembers EVERY DETAIL of negative experiences from his past.I don't know where your son is on the Autistic spectrum, but each Autistic child has their own soothing mechanisms, aversions, etc. For instance, my son is not like the typical teenager who cares about girls or appearance. He will pretty much wear whatever is most comfortable...usually soft materials.I don't think he would be concerned about how the G-tube "looked" nearly as much as he would about how it felt.
Feel free to ask me any questions you might have about the G-tube. My daughter has the MicKey button, and we love it. She was in the <strong>negative</strong> tenth percentile for BMI when we got her tube and fundoplication. After getting the G-tube she gained lots of weight, had less pulmonary exacerbations, and has maintained a perfect BMI for years.It has become a part of her daily life, and she has no issues with it. Her pancreatic insufficiency was very bad.I am thankful every day for the G-tube and definitely would recommend it!
Take Care,
Michelle
P.S. My son is a very picky eater due to his sensitivity to certain textures in food. If your son also has a small preferred "menu" I can see why he might struggle to gain weight. The G-tube will help so much...no more struggles to push more food intake.
I have a fifteen-year-old Autistic son as well! He does not have CF, but my 11-year-old daughter Victoria does--and she has had a G-tube for over nine years. I asked my son what he would think about getting a G-tube if he needed one. He surprised me by answering that his greatest concern about getting one would be the alarms/beeps from the pump at night. Alarms are one of his aversions. I was surprised that he didn't seem concerned about the pain of the procedure, but my son passed a kidney stone without a single tear shed when he was a toddler. His sensory perception is a little off so sometimes he tolerates pain very well, and at other times he is overly sensitive. I would ask that your son have his tube placed with plenty of anesthesia because my son also remembers EVERY DETAIL of negative experiences from his past.I don't know where your son is on the Autistic spectrum, but each Autistic child has their own soothing mechanisms, aversions, etc. For instance, my son is not like the typical teenager who cares about girls or appearance. He will pretty much wear whatever is most comfortable...usually soft materials.I don't think he would be concerned about how the G-tube "looked" nearly as much as he would about how it felt.
Feel free to ask me any questions you might have about the G-tube. My daughter has the MicKey button, and we love it. She was in the <strong>negative</strong> tenth percentile for BMI when we got her tube and fundoplication. After getting the G-tube she gained lots of weight, had less pulmonary exacerbations, and has maintained a perfect BMI for years.It has become a part of her daily life, and she has no issues with it. Her pancreatic insufficiency was very bad.I am thankful every day for the G-tube and definitely would recommend it!
Take Care,
Michelle
P.S. My son is a very picky eater due to his sensitivity to certain textures in food. If your son also has a small preferred "menu" I can see why he might struggle to gain weight. The G-tube will help so much...no more struggles to push more food intake.
Michelle, thank you so much. We seem to have alot in common. I think my son will be concerned how it feels not looks. He like your son can recall every bad detail of an experience and does not seem to ever forget. He is behind developmentally, carries a stuffed panda with him for comfort and wears headphones most times. He does have a very limited diet because of allergies and his own food aversions. If you could live and grow and be healthy eating Popsicles and popcorn I think he would have it made. My husband and I are really considering this since he is no where even near the 3rd percentile for weight. Thanks again your post was very helpful, Janelle
JennyCoulon
New member
Our oldest who is 12 1/2 has a g-button and has had it for about 7 years. He does nightly feeds 6 nights a week over about 8 hours. It has done wonders for him. Our midlle child who is 7 just got his g-button placed just this last Tuesday. He was admitted that morning at 9:30 and surgery was scheduled for 11:30. The OR was running late so it was closer to 12:15 before he went back. He was in surgery for about 45 mins and then in recovery waking up for about 30 mins. He was taken to his room where he rested and rest of the day and they started feeds that night. He was on Kids Essentials and got up to 80 ml an hour. He got to come home the next day by noon. He didnt do feeds the first night home but he did it last night and is doing it tonight. They now do the placement of the button lapriscopicly thru 4 small incisions around the belly button. He was given pain med and actually is up walking around without help. I am waiting to see how much weight he gains because with our oldest he started gaining a lot fast. My oldest is also on an antihistamine as an appetite stimulant and that is really helping also. Both of our boys do the feeds just overnight. Hope this helps.