calling all G-tube moms!

Jessica - posted on 04/05/2009 ( 29 moms have responded )

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I couldn't find a g-tube community so I started one. If you want to talk about tube feedings search for "G-tube parents" in the community search and join. Thanks!

~Jess

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Maria - posted on 11/01/2013

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My nephews g tube (mickey) came out and my sister/ his mom cant put it back.in. What
should She do?. She called the hospital and they said to call them back in an hr..

Heather - posted on 11/09/2012

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My daughter has had a G-Button since she was 5 months old and she will be 4 in January.

Jessica - posted on 11/05/2012

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My son has a g-tube. He got in a week before his first birthday and now that he's three we are trying to wean him. He is doing well but it's a long road.



Does anyone else use probiotics? What kind?

Heather - posted on 08/24/2012

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My daughter is 3.5 years old and has had a G-Tube since she was 5 months old. She had the Microvasive Button until April 2012 and then we switched her to the Mickey. She knows when its feeding time as soon as the pump comes out. She's on continuous feeds at night but bolus feeds during the day. She can eat by mouth just soft things. I don't consider her any different than my nieces. We have a baby on the way and im curious to see how she will react to see the baby eating a bottle and not a pump.

Dana - posted on 08/20/2012

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If anyone is looking for special formula, check out www.star-medical.net. They have a ton of formulas that are hard to find as well as enteral feeding pumps and buttons. I hope that helps!

Laura - posted on 06/21/2012

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My son got his g tube when he was only a few weeks old. He is now 4 years old and I was wondering if he needs to ever be resized for his mic-key

Tina - posted on 06/14/2012

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@ Evelyn my daughter was on g tube as well, same calories, same problem. They figured out her stomach wasn't emptying very well and the stomach acids were not breaking down the formula. We tried stomach emptying meds, Miramax, changing feeds nothing worked. So in Jan she got a gj tube instead she has a special formula that's aready broken down. The gj bypasses her stomach and goes directly into intestines, jajutem ( spelling) she is doing great!!! No vomiting, gaining weight and her bm are more regular. She still has the g tube for meds, and to burp her. She has a Mickey it looks the same just has an extra hole for j feeds. The only down side to it is the rate must be much slower going in j verses g so she is on machine a lot longer. But they make super mini back packs my daughter is 2 yrs old and only 26 pounds and she can still run and play. Also im sorry I forgot your child's age but if he's eating any food stay away from meats, vegetables, fruits anything high in protein, fiber, natural sugar. If you look at the ingredients of what he has now for g feeds you will see its high in protein and fiber. His stomach can't break it down. I wish you the best!!!

Sharlene - posted on 06/13/2012

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My daughter is also on pediasure but does'nt have that problem,Are you with a feeding clinic. Maybe talk to them if so.

Evelyn - posted on 06/13/2012

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hi im a mother of a 3 yr old boy his had a g tube placed for a year now the issue is he is trowing up to much not after every feed but after most his on pedia sure 1.5 calories im very overwhelmed and doctors dont seem to see whats wrong any suggestions

CYNTHIA - posted on 06/03/2009

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MY OLDEST DAUGHTER HAD HER FIRST G-TUBE PUT IN BEFORE SHE WAS ONE AND BEFORE THAT SHE HAD AN NG TUBE. SHE WAS BORN WITH A DIAPHRAGMATIC HERNIA, AND HAD SEVERAL MOR PROBLEMS AFTER THAT. KESHIA IS STILL VERY LITTLE, SOMETIMES HER WEIGHT DROPS DOWN TO 69 POUNDS , AND SHE IS 19 AND HALF YEARS OLD PLUS SHE NOW HAS A 18 MONTH OLD SON, SHE HAD HER BUTTON AND G-TUBES FOR A COMBINED TIME OF13 PLUS YEARS. HER SON WAS BORN AT AROUND 24 WEEKS AND HE COULDN'T EAT SO HE GOT HIS FIRST BUTTON ON DECEMBER 2007. ALEX IS DOING GREAT; WE HAVEN'T USED IT FOR SOMETIME BUT THE DOCTORS WANT TO MAKE SURE HE CAN HOLD HIS OWN; HE FINALLY PASSED HIS SWALLOWING TEST FOR THIN LIQUIDS LAST WEEK. THE MIC-KEY AND G-TUBE SURGERIES SAVED MY DAUGHTER'S LIFE AND MY GRANDSON'S. CHILDREN'S HOSPITAL IS THE BEST!!!!!!!

Bridget - posted on 05/21/2009

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Wow! you go mom, and what a cute little boy you have there. Thomas is going for another eye appt., and I think we will be going to get glasses. He also has the quad CP, vision problems, and so far the seizures aren't shoing on EEGs, but he does things that make me think he is having them. He does some signing, but his hearing is ok. With therapy 6 times a week we get really busy over here. It took over half a year before he g-tube stopped all the leaking, and irritation it caused. Nice talking to you, and good luck with everything.

Eliabeth - posted on 05/21/2009

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My 8 yr old son has his button fitted at 2, due to asperating fluids, which was causing muliple lung infections.

He eats mashed food extremely well, and we are considering stopping his overnight feeds of nutrini milk due to his stable weight, but he will always have his button for fluids.

He was born at 25wks gestation and also has severe quad cp, lung disease, is oxygen dependent, epilepsy, a vp shunt, nystagmus, no central vision, and audiotory neuropathy.

Any body needs to chat, drop me a line :D

Malissa - posted on 05/17/2009

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My 10 year daughter has had a g tube for about a year. She has Down's Syndrome and Celiac Disease. In the year she has only gained 8 lbs. She is only in the 10th percentile for girl with DS in weight but height she is in the 80th. Doctor said she may have to have it for her whole life. I pray she doesn't but will love her the same. Is 8 lbs " normal " weight gain for a year?

Bridget - posted on 05/17/2009

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How probable is it to actually be able to get the g-tube removed? My son Thomas has had his g-tube for almost a year now. He can eat solids, but cannot do liquids. Is it very likely for him to grow out of needing the g-tube? I worked special ed for 13 years before having to quit due to having my own child with special needs. All the kids that I worked with had the g-tube for their only source of nurtition, and I was just wondering how likely it is to be able to have it removed.

Jenny - posted on 05/15/2009

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My daughter was diagnosed ar birth with T.E.F. We were devasted as we had no clue before than. She got a g tube at 2 weeks but it was removed at 4 months. We still see her specialist for swallow tests and dialtions.She still has many problems swallowing and eating, it becomes almost impossible when she's teething as she gags and chokes on everything even bottles. I've had to quit my job to stay home and take care of her as she still has a very big pouch and her stricture is at 11 cm. I'm constantly afraid that she's going to swallow something she's not supposed to and rip something or her esophogus will close up again and we than have to put her back on the tube. Her doctor said it would be more risky to reinsert the g tube. Does anyone know if this is true? I'm afraid they took her off it to soon as she's so young that she can't understand what she can and can't do as she's only one. From what I've read most kids stay on their tubed for a while the doctors nurse even said they normally leave it in untill they are at least 3 by then most kids with that condition are able to eat by mouth without problems they just leave it there so they have it if needed. She said they take it out than because the kids keep pulling it out, Unfortunetly I can't ask that Dr because he moved to the Bahamas and didn't let us know. Her new specialist doesn't really know her very well as he only has the info we have been able to give him, Can anyone give me any advice on this?

Melissa - posted on 04/22/2009

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My daughter was born at 24 weeks and has had "artificial" feedings ever since. She was born in May 2007 and had an NG tube until Feb 08. That's when we realized she was not getting better and opted for a G-tube (mickey button) It is our life saver!! I am also a nurse so if anyone has any questions related to NG or G-tube let me know. I sometimes still have emotional difficulties trying to get through it day to day. She will be 2 in a couple weeks. She wants to tastes things but not just yet. She aspirates and would have no clue what to do as she takes nothing by mouth. I'm glad to know that I am not alone. I'm glad to have connected on this site!!!

Lori - posted on 04/21/2009

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My son is 7 1/2 and has had a gtube since he was 3 months old. He got RSV and had to be intubated and they placed the tube then. He had previously had no problems eating, but the intubation damaged his vocal cords and he still cannot pass a swallow study. How did you get rid of your sons after 13 years? We tried vital stem therapy last fall, but he had to have emergency surgery before we could do a swallow study. He wants to eat SO bad and has no mouth sensitivity or aversions. I want to help him be able to eat SO badly. I don't know what to do anymore.

Jamie - posted on 04/20/2009

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My 7 month old son is getting his "button" this wednedsday! He will not take his bottle, unsure oof reason why. He does has reflux (not terrible) and used to aspirate which was only for a short time. He has had an NG tube in for about 6 weeks. It's so frustrating that he will not eat. He was 5 wks early with IUGR, weighing 3lb 5 oz. He does have some muscle tone problems and is in PT, OT, and speech for feeding. How long is the g-tube recovery??

Candise - posted on 04/20/2009

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Hi,

I would not call myself an expert but close! My oldest son had a Gtuge for 13 years! He is now 16 and it is gone but we had our share of drama with that tube!

Michelle - posted on 04/20/2009

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My son had an NG tube from when he was 6 months old till he was 11/2 then they placed the G tube for about 3 months and now he has a G button wich makes his feedings so much easier. My son is 6 now and just had a small bowel transplant in January of 2008 and we are very hopeful that he wont need his G button in a couple of years. That is once he starts eating enough by mouth to not need it anymore. It is more difficult to try to teach a child at this age to eat than when they are younger. They are so use to the tube that they dont even know why they have to eat.



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My son had his g-button removed last week and we are so excited. He had his for a while so he had to have the lining of his stomach sutured back together and is recovering well. Should only take about 3 weeks for his skin to mend and then he is done with feeding tubes ....yeah.

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My daughter has had a g-tube since she was 3 1/2 months old. she will be 2 in july. it has helped alot. she is now off her continuous overnite feed and eates everything by mouth. the g-tube is still needed for her meds though cause she cannot swallow fluids unless it is thickened. i dont no if i can put thickit in with her meds. but i do plan on asking the doctor

Kindra - posted on 04/19/2009

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My daughter had a g-button placed in November during her 5 month NICU stay. She is now home and we are dealing with the feeding issues. We are practicing PO feedings but she is really having a hard time. ECI is working with her and speech. Just wondering how you deal with the frustrations of feeding issues and g-button? She is doing the best she can but I still get discouraged from time to time.

Michelle - posted on 04/18/2009

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My daughter has had a G-tube since she was 5 months old. She is now 4 and 1/2 years old. We started with a G-J tube and transitioned to a G-tube in August of 2007. She's thriving and doing well with it and is on a blenderized diet and not formula. Please let me know if you have any questions!

Dena - posted on 04/17/2009

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My 2 1/2 year old has had a g-tube since she was 7 months old. We are so thankful for it, as it has helped her thrive. We are getting ready to change insurance, which means probably a change in medical suppliers. I am hoping to have the same pump, but I guess I get used to another one if I have too. We are currently using the Zevex Infinity, and I really like it. Previouly we had the Kangaroo is was okay, but much more bulky than the infinity.



Brandi, it is good to hear your Mika is doing so well.

Brandi - posted on 04/16/2009

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My Mika had her G-Tube placed in 2006 at age 2. We're going on our third year and she's finally on the Standard Well Child Check-up Growth Chart!!!



 

Krista - posted on 04/05/2009

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My son Dewayne had a g-tube for about 1 1/2 yrs. if anyone wants to talk or has questions about them just write me and Ill try to help you.

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