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Name: shammywo
[ Original Post ]
Anyone have a kid with a feeding tube? My daughter's had one almost her whole life. She has severe reflux but not since her nissen fundo. Now trying to wean her from her g-tube. She is very texture sensitive and is 35lbs. at age 5yrs. Anyone else with these problems?
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Name: TRACEY CARROLL | Date: Feb 25th, 2006 2:53 PM
HI MY SON IS 18MNTH OLD AND HAS JUST STARTED BEING TUBE FEED HE HAS A NASOGASTRIC TUBE.HE HAS A METABOLIC CONDITION WHICH IS CAUSING HIM TO FAIL TO PUT WEIGHT ON. WE ARE NEW TO THIS AS HIS FEEDS ONLY STARTED 3 WEEKS AGO BUT WE SEEM TO BE COPING WE ARE NOT SURE HOW LONG JACK WILL NEED A FEEDING TUBE BUT WE HOPE IT WONT BE TO LONG

TRACEY CARROLL 

Name: Tracy | Date: Mar 17th, 2006 12:23 AM
Hi, my daughter has had a gtube almost her entire four years of life secondary to intractable epilepsy. She did not take oral feeds until she was about 2. I had the help of a feeding specialist and she slowly began taking oral food. She was also very texture sensitive and still is. I utilize her g tube for liquids only now and she eats 3 meals a day. (still mushed up with a fork) but she loves to eat. It took time and patience and a good therapist. iIwas not sure she would ever eat. She weighs almost 45 pounds at 4 years old. I have kept her g tube, which has been a life saver because somedays she has alot of seizures and is unable to eat so I actually grind up her food and put it through the gtube with liquid thus giving her more calories then any formula. Tracy 

Name: Liz Lipski, PhD, CCN | Date: Mar 30th, 2006 11:39 AM
Dear Tracy,
I once had a small client with epilepsy. It turned out that she had a B-complex and B-12 vitamin deficiency; once those were corrected her seizures completely stopped. This was over 5 years ago and she remains seizure free. This may or may not be helpful for your daughter, but you can ask your doctor to check her homocysteine levels. For a small child normal is 3 or less. If it's higher than that, you can give B-complex vitamins and also either B12 shots or sublingual (under the tongue) B12 at 2000 mcg daily. 

Name: kye | Date: Apr 19th, 2006 1:30 PM
hello,
how are you doing there,please mail me back i will help you out kye_mya@yahoo.com.i will be expecting you mail.

cheers 

Name: michelle | Date: Apr 28th, 2006 10:29 AM
my 7yr old daughter has a mickey button(g-tube) shes had it for 3 yrs now she used to eat pured foods by mouth than one day she wouldnt eat anymore. Doctors dont know why. she was 4yrs old and weighed 15lbs before anybody lisented to me. the doctors gave her a ng tube for 3 months to see if shed start eating again but she didnt. Now shes 7yrs old and slowing eating again i never gave up on her. I tryed to feed her every day most of the time shed just spit it out.she now weighs 52lbs.My advice is never give up 

Name: Juanita | Date: Apr 30th, 2006 11:25 AM
I have a 6 yr old son with a feeding tube.He does not have a nissen fundo but i have heard of those.He is severly mentally and physically impaired with a severe seizure disorder as part of it.He got a g-tube as the result of a prolonged seizure 3 yrs ago and lost the ability to swallow sufficiently. Until then he couldnt chew but loved his bottle and mashed up foods :) Im happy youre able to wein your daughter off now if you would like to talk let me know :) 


Name: ana | Date: May 14th, 2006 6:16 PM
hi my daughter is 3 months old and has been put on a feeding tube for about a month now. she also suffers from reflux which i think was caused by her being intibated for 3 weeks. i am trying to cope with this and it's hard to talk to people who have no idea what i go through. it's been rough but i'm getting there. they just put a mickey button on her and its leakage is so bad, as well as the gran. tissue. Could you give sugg. on how to maintain it and keep it clean? I told the dr's that it bleeds at times and they say its ok, is it really ok? i wonder. please email me if you can fflores32@aol.com 

Name: shammywo | Date: May 17th, 2006 12:18 PM
thanks everyone for your responses! We just had a visit with our feeding clinic at the hospital. She weighs exactly the same as she did in July of 2005-down to the very ounce! We have three weeks to get her to gain or its bolus feedings and night drips again! I have cut my work hours to be home with her during the day. Wish us luck! Everyone has always told me this takes time and patience. Well it's been over 5 years now and I keep coming back to square one. No matter how much she tries or what we do she just won't gain without tube feedings. We have an awesome speech therapist and a team of specialists at the feeding clinic at OHSU in portland. Anyone ever heard of the Kennedy Kreiger Institute? Their feeding clinic is intense and has good success rates but it's in Maryland!!! 

Name: Ridsdale | Date: Aug 17th, 2006 3:32 PM
My 15 month old daughter has a G-tube and also had a fundo. We are experiencing very similar issues. She is very defensive and will not take anything by mouth. Her wieght is now very good (20 pounds!! Thanks to the G-tube) She weighed 11 pounds at 7 months old. Please talk to me because I need to know that I am not alone in this struggle. 

Name: RTewesHawk | Date: Aug 24th, 2006 7:55 PM
Has your child been tested for cystic fibrosis?? 

Name: sweetcaramalkiss | Date: Sep 16th, 2006 10:55 AM
Hello my son has a g tube as well also had it for most of his life. He will be turning 4 oct 15 and he's only 27 lbs he has always been under weight. He never got the fundo they said he didnt need it at the time plus i was afraid of all the possible affects that could come from it. My son also has many other problems as well. He cant walk or talk they say cp but its stressful 

Name: goodmommy22 | Date: Oct 11th, 2006 11:32 PM
If you are worried about her weight gain. My daughter also has severe reflux and had a fundo a g tube. They are talking about supplementing her food so that she will gain weight as she needs too. 

Name: goodmommy22 | Date: Oct 11th, 2006 11:36 PM
Also to keep it clean I bought a really thick gauze roll and I fold it over 3 times and cut it and put it under the bolster I do this 4 or 5 times a day my daughter has the same problem with leakage. I hope this helps and I know it is very stressful I feel like I cant go anywhere because people will stare at me if I have to feed her through her tube. 

Name: RachelL | Date: Jan 11th, 2007 9:53 AM
yeah my daughter has a gtube with very bad reflux, the Dr is considering doing the nissen 

Name: babygirlsmom1005 | Date: Jan 11th, 2007 4:05 PM
My daughter is 15 months old and has had both the Fundo and G-Tube done when she was 7 months old. Since the surgery, she has not gained any weight and has actuall lost 1.5 lbs, also has not grown in height and just today was diag. with FTT and has been refered to a endocronologist. We in waiting on when the appt. is going to be. She sees a total of 5 doctors already (well 6 adding the endo in) and 4 thearpist. She also has major texture issues and the Occupational Thearpist she is seeing has done wonders with her (she would always nurse, she's a total titty baby, but would not do any food, a little after 13 months old, she will tollerate pureeded foods oraly - major step). I totally understand what y'all are going through and if you need to talk, just let me know.

Marcie 

Name: redi1956 | Date: Jan 26th, 2007 6:12 AM
hello , my son had a g tube at birth ,he has autism spectrum disorder,he is 8 and weighs 42 lbs he has an eating disorder sensory related he will only eat small dry things he is on prescription pediasure this maintains the weight thst he has I have done every thing to try to get him to try new foods and it gets harder as time goes on .I never expected this to last this longand thought he would have grown out of this buy age 5 but that did not happen and it is very frustrating good luck to you with your little girl you will need it.you might want to look into some feeding programs to help . take care 

Name: jennifer | Date: Nov 12th, 2007 7:23 PM
hi 

Name: jennifer | Date: Nov 12th, 2007 7:27 PM
hello,my son has a g-tube every since he was 2 weeks old now he is almost 4 months he was pucking up blood which at first he had pyloricstanosis had surgery on that then he had severe acid reflux but it was comoflauged from the pyloricstanosis because it has same symptoms... then he was aspirating which means when he eats it goes into his lungs... it is sad but not sure how long he has to keep it they say he will grow out of aspirating it all depends on him... 

Name: Dee | Date: Feb 29th, 2008 6:25 AM
I have a son who was a ex- 26 weeker twin b. He was in the NICU for 4 months. At one yr old we had to put a feeding tube in him. At 11 months old he got a stomach virus and subsuqently stopped taking a bottle or eating anything by mouth. To this day we have no idea what triggred this beside the flu. We only had a diagnosis of Failure to Thrive. No one can give us a answer as to why. Now he is 2 and has had the feeding tube for 1 yr. He vomits daily and we have had very hard time getting to take in even 4 oz at a time. Does anyone have this problem? Do your g-tube kids puke all the time during feeds? 

Name: twinsmomma323 | Date: Feb 29th, 2008 6:35 AM
I would really like to chat with anyone who has experience with feeding tubes. I feel like I am alone in this world. Not even the dr/s give any good advice. I want to find out when you boulice your child during day, do you let it go in fast or slow. No one gave us directions! Also, How did anyone make the transition from soley feeding with g tube, to getting the child to eat fully by mouth and getting rid of the darn thing. How long did it take? .... EMAIL : TBONE1432000@yahoo.com. Thanks 

Name: Rebecca | Date: Mar 22nd, 2008 7:29 PM
yes i am in the same boat my son has had a feeding tube since he was 1month old. Ryan has a nissen fundo and also has severe reflux and has not gotten better. they told me that ryan's lower intestines that the sugear was low that they do not know how to fix it. you can e-amil @ rebecca.hallett@bankofamerica.com 

Name: motherofaprincess | Date: Jul 18th, 2008 5:20 AM
hi we have a seriously ill and disabled daughter and need your help we have just set up a web site and forum for her please join www.foreversmiling.org.uk 

Name: chasity | Date: Jul 23rd, 2008 11:07 AM
hello, i have a 16month old son- he was born with CDH, he has a mickey button, it is a total fight to move up the volume-doctors keep stating he is low on volume (he takes about29oz in 24 hour period) he weighs 22 pds, think he might have lost weight because we tried to change from pregistimal to pedisure-peptim jr, he cant tolerate it, he throws up-which shouldne be able to do because he has the nissen surgery. we deal with retching-which i know all the mothers know what i mean, this is horrible to watch, compeltely breaks my heart. it takes 1hr and 30 min to give him 137cc, he has to lay still, so he wont retch it up. i was wanting to give him vitamins, but not sure what ones are good for young babies, i know the formula is only made for babies under 12months old- any suggestions...we try putting in foods thru a syringe, but its the time issue, because he eats 4x a day then starts a night pump for 8 hrs. he only gets 1hr to 1hr and half per feeding. i notice his hair is not growing and i am concerned he needs extra vitamins... he is a true miracle baby and i want to be able to murish him, even if it has to be thru the tube...... please help on anything you can. does any parent struggle with volume issuse, time it takes to feed?? he has no desire to eat foods, major oral aversions due to 3 months in nicu, ventalitor, tubes in and out, etc. you can email me too at chasity.m.oden@chase.com 

Name: bnapie825 | Date: Aug 18th, 2008 3:00 PM
I am the mother of a 4 month old baby who had the g-tube and nissen fundo done about two months ago. Everything my husband and I read online before deciding to do the surgery was that their baby was so much happier after having the g-tube in and nissen and not having any more reflux. Well my daughter had severe reflux and was aspirating to her lungs and is on oxygen. Since having the surgery done she has been extremely fussy and in so much pain due to having gas pains. We are at a loss on what to do. Any medicine we giver her (reglan, tylenol, gas drops) are given to her through the tube and nothing by mouth. She tightens up her legs and just screams and is livid. I have read online about colic calm and am tempted to buy it but just not sure if it will work. Has your daughter had any problems with gas and if so how did you resolve the problem? Please help!! 

Name: WOW | Date: Sep 9th, 2008 4:20 PM
my daughter is 5 and g-tube fed she will not eat she has server oral diversions it is a battle just to brush her teeth. I just keep offering her food. Then she cry and cry. It is hard 

Name: wow | Date: Sep 9th, 2008 4:34 PM
The gas issue vent her g-tube before you feed and if discomfort vent tube 30 to 60 mi after fed. There is also over the counter Gas meds. just give it right before the child eats.


Does any body have any ideas on how to get my daughter to eat. Like most of you she has had external feeding from birth (G-tube, J-tube , now Mickey button) She was on a Vent but Thank God no more, and her Trach is out. But she will not eat and only says a few words and makes sounds, she trys to humm some songs now. 

Name: bewildered | Date: Oct 15th, 2008 9:52 AM
I have a 15 month old girl who weighs exactly 16 lbs. She' failure to thrive and does have reflux, but doesn't vomit. she's had an ng tube several times and a central line. Basically she nursed poorly and almost quit altogether at about 5 months. The theory was that there was something in the breastmilk that didn't agree with her. She had very mucousy and frequent watery stools. There was also trace amounts of blood in her stool. So the doctor had me put in an ng tube and tried every formula. Alimentum, nutrramigen, ellicare, tolrex, rcf, the list goes on. The results were the same. She would tolerate the formula for about 48 hours then vomit the entire feeding , every subsequent feeding. After about 4 weeks she started vomitting profusely and I called the doctor. I said it was very different and he said we had to put in a central line immediately. so we did and he never even examined her. turns out it was just a virus the whole family got. If he'd waited just a few hours or even examined her, we could avoided this very risky, life threatening procedure. So she was supposed to be npo until 1 years old and we couldn't accept that. so we sought another opinion. The new doctor was appauled. When her local GI doc couldn't seem to get the TPN adjusted for her needs he wanted to do some tests and I said we had already done those can't we share info with the second opinion doc and he fired us. So eagerly our second opinion doc took over and weened her off TPN. He put her back on breastmilk (donor milk) which she had always tolerated fine. Ng tube again then an inpatient feeding clinic. AFter a week they said it would be months before she started to eat by mouth and they had nothing to offer but took out the life-threatening, unnecessary central line. Well luckily I'd had my fair share of feeding clinic experience./ (my older daughter had acid reflux and FTT, But eventuall took a bottle and just scathed by although at 3 years old she takes 30 mg prevacid daily and is dependent on miralax.) so I went home took out the ng tube and she started eating. No baby food and no bottle. But she drank from a sippy cup and we gave her whatever she would eat. She liked strawberries, caesar salad and Amy's nacho bites. She became practically a fruitarian. But oddly enough I offered her pediasure and she took it. And it's amiracle and we can't explain it, but she tolerates it just fine. Okay she still has many many days when she doesn't get even a third of the calories she needs or want to drink fluid. We are always worried but she is developmentally beyond her age. She has amazing communication skills and fine motor skills. If anyone has suggestions or has similar experiences - PLEASE share 

Name: Margaret | Date: Nov 7th, 2008 1:42 AM
It's such a slow process!!! been working on it for 3 years, my kid is 41/2, still gets 75% TF. Lots of therapy, mouth exercises w/nook brush and vibrating toothbrush b-4 food to stimulate oral sensation, lots of salty, crunchy, or chewy foods work best for us. first thing in morning works best, they are really hungry. It's scary to take away formula, but as long as they don't actually lose weight, promoting hunger is not dangerous, run my kid around the park before gt to increase hunger. He's just getting it lately, it's so hard!! 

Name: webs0216 | Date: Dec 16th, 2008 9:59 PM
Our baby has been on a feeding tube since birth and is now 4 months. He suffered a hypoxic event at birth and experienced damage to the area of the brain that effects movement. He will not take any milk from the bottle but he will drink a little from the breast, unfortunately not enough to sustain himself. He is currently on phenobarb for his seizures . He is also extremely sensitive to everything and cries constantly. We don't understand if he cries from the feeding tube, phenobarb, or the brain injury. Like many of the other children i have read about on this thread, our child is underweight and gaining but very slowly. I know that feeling of noone else understanding. I feel very hopeless when he cries and cries for hours straight. does anyone else experience the endless crying for no reason. Has anyone found something that helps? 

Name: lisa | Date: Mar 19th, 2009 12:26 PM
My son who is 23 months has had a mickey (g-tube) for almost a year now. He has something called Eosinophilia Esaphogitis (EE). He only weighs 22lbs. He also has a texture sensitivity and we have been working with a nook brush. It has worked miracles for us. His OT therapist introduced us to it. 

Name: cheryl | Date: Sep 9th, 2009 9:59 AM
I have a 3 yr old daughter who was born 26 wks.. she was in the nicu for 3 months.. She came early because i had preeclampsya? My daughter got her g-tube at 11 months old.. and still has it.. She is pretty much 100% tube fed.. she'll eat very little by mouth.. SO it's a very very sloooowww process, when she left the hospital to come home she was drinking great, 7 0z bottles, but then after a few months went down hill wasnt gaining and not eating enough.. Thank god for this g-tube I'm still nervous about it but it's helping her gain weight she's now 27 lbs at 3.. She still has a problem throwing up and it's not reflux she's on meds for mucus build up and it's helping !! So other then eating, she's a healthy little girl who runs all over the place and keeps us busy :) HOpe to chat w/ other mom's... 

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