Tube-Fed Children

Chauntel - posted on 06/09/2012

my daughter also has a MIC-KEY placed jan of this year she is now 14 months old and like your son was failure to thrive... My daughter suffers from Alpers Syndrome. she is home and I care for her all the time and her older siblings as well.

Allison - posted on 12/02/2010

my son has a gtube and a nissen. he has horrible gas and if we can't vent him before the gas gets too bad, he vomits. he had the surgery 6 months ago and the gas has gotten worse since we've compressed his feeds down to 45 minutes. how can i make a balance between his food schedule and/or beating the gas?

also, since they don't make button down sleep sacks, i made my own. was also wondering if its a good idea for me to start selling these to help with bills since now I have to stay at home to care for him.

any help would be appreciated!

Melissa - posted on 12/02/2010

Our son is had a g-tube and nissen in jan 2010. He developed an oral aversion to food. From the start we knew we only wanted the g-tube as a temporary fix to help him gain weight. Remember sometimes its better not to listen to the docs and go with your gut. If we listened to everything our sons doctors and nutrionist said he wouldn't be doing as well as he is. He would have the g-tube for years. We have cut back on the amount of his tube feeds because he was never hungry and wouldn't eat. Now he is more interested in food and eats before the feed. We are hoping in the next couple mos. to stop using the g-tube all together. Leave it in for 6 mos just in case he gets sick and if all goes well remove it for good. As parents, we really do know our children better then anyone else. Even those who have degrees..contact me if you have questions...good luck

Lisa - posted on 11/04/2010

Hi!I Have a daughter she is now 18yrs going to be 19yrs in Jan.she,s doing fine shes had the fundoplication also has a mickey.rarely never any problems.If you would like to know more you can e-mail me at mccallumlisa@hotmail.com.

Marissa - posted on 11/02/2010

my daughter has a g-tube and has had the fundo she is 10 years old now and is doing great!!!

Sheryl - posted on 10/12/2010

My daughter had an NG feeding tube in at 2 months to help her I did not like this so during one of many surgeries we had the Mic tube put in, she did amazing with it. She had it for 5 years till she had gained enough weight for her open heart surgery and after recovering from that the doctor's sent us to a feeding study where my daughter and I stayed at the hospital for a week in a special room and were both trained on feeding her "real food" Was the best thing we did, we were there in case she aspirated and they were able to watch her food digest. She is now 12 and has been without it for 7 years and eats me out of house and home! She does still have the little hole in her belly but she just tells everyone she has two belly buttons!

Iridescent - posted on 10/10/2010

A g-tube is a gastrostomy tube - the MicKey would be one, the first one that is usually placed that is long (PEG) is, any tube that goes directly from the abdomen, through a surgically cut hole, into the stomach, is a g-tube. If it goes into the stomach and jejunum, it's a gj-tube, and if it goes directly into the jejunum, it's a j-tube.

Georgina - posted on 10/10/2010

Hi i have a 7 year old daughter who has a Mic-Key button in.She had had it since she was 3 due to not gaining any weight at the time.Since putting the button in she has not had anything by mouth for she has lost that action now.Why feed by mouth when u get it straight into the stomach.It was the worse thing i had ever done for she was eating by mouth before she got the button in. IT has not made that great of a diffence in her weight gain over the years, For the formula that she is on makes her reflux all the time and the doctors keep putting her all different medications to help reduce it. I live in in ausralia and i was wondering if someone could tell me what a g-tube is?

Erica - posted on 10/07/2010

Ava was NG at birth to 4 months, then she got her Mic-Key at 9 mos. We did the fundo at 23 months and we have seen a huge change! Unfortunately after the fundo she was diagnosed with dumping syndrome so it doesn't look promising as far as a weaning plan is concerned..... She does eat PO feeds as well. Let me know if there is anything I can help you with ;)

Erin - posted on 10/06/2010

My daughter Maggie nursed well as an infant but never went on to eat real food. She got her g-tube just after her 3rd birthday when she was failure to thrive. She used to cry the whole time we were feeding her and I used to cry at how hard it was on both of us to beg/bribe/cajole/threaten/force her to eat. I LOVE her g-tube and feel its the best thing we ever did for her. She's been so healthy since getting it and is so strong and healthy now. She shows little interest in food but we encourage her to taste food and hope she'll develop an appetite one day.



Just a caution: we had the Bard originally. Maggie had a critical illness and gained about five pounds while in the ICU and during her recovery. She would scream at night and we were trying to rule out whatever could cause the screaming but she had been on so many meds in the ICU that we thought it was just weaning from the meds. Maggie is completely non-verbal and has epilepsy and appears to have a high pain tolerance. Her surgeon was confident there was nothing wrong her g-tube button, she had it examined several times and always said it was great and that if anything was wrong, Maggie would be in extreme pain. Finally, formula began coming out of her stomach from AROUND the g-tube. It turned out the Bard had migrated out of her stomach and was embedded in her abdominal wall, where it had formed an abscess and was infected by the time it was removed. We think her weight gain in the ICU caused this to happen because for the first time, she had a bit of abdominal fat so she outgrew the Bard all of a sudden. She was borderline septic by the time they discovered this. She had to have a PEG for a while to form a new stoma. The surgeon convinced us to try the Bard again but about 9 months later, Maggie began appearing to have pain again, so we removed the Bard. Since then we've tried both the mic-key and the Nutriport. My favourite is the nutriport. The Mic-Key has such short connector tubes that clog fairly easily compared to the Nutriport. If you have an active, wiggly kid, the Nutriport connector tubes are much longer and easier to maintain.



PS: My girls have g-tube dolls to play with and I've donated g-tube dolls to Maggie's preschools and kindergarten class. They are always a huge hit in the housekeeping centres! You can take any vinyl baby doll, puncture a whole in the stomach and insert a Foley catheter to make a g-tube baby. Or you can make a "button" by using the little white removable piece that comes on the connecting end of the Bard. You just insert the part of that piece that connects into the button itself during a feed, into a small punctured hole in the baby's belly. Then you connect the connector tube itself to the button for each "feed." I think that having these dolls has helped normalize the g-tube for Maggie's classmates and sister.

Iridescent - posted on 10/05/2010

I hope things go well for you, too, Cassandra. My daughter Cassandra has a tube (3 years now, almost). We started with MicKey and went to AMT Mini ONE Capsule non-balloon this year. Our son Justin has become allergic to all foods at this point, and is on formula for his entire diet, so we're also familiar with that. He is 3 and we are going to both their GI appointments on the 13th. Please let us know how things go for you and your son!

Cassandra - posted on 10/05/2010

My son Justin(19 months) is getting a MIC-KEY button and a Nissen done on Thursday. I hope everything oges well for him. He won't eat anything by mouth and he has tons of food allergys. No diagnosis yet, but I hope we are on our way.

Denise - posted on 12/13/2009

Having a child with a feeding tube is challenging for us so I appreciate knowing all of you also have special children like this! We feel like our daughter's tube feeding schedule dominates our lives. How have any of you dealt with that? Also, my duaghter's mic key button has been leaking alot. Anyone have some tricks on how to deal with this? One more thing...my daughter (she's three) hasn't really ever eaten by mouth although there isn't a physical reason why she shouldn't (she's had corrective surgeries on her esophagus and a fundo). We know it's a behavior thing now and I'm wondering how other parents have gotten their tube fed children to eat. Our biggest problem is communication because she is deaf (due to being on a ventilator for a month) but I'l still like to hear other parents' comments. Thanks so much!

Heather - posted on 12/11/2009

I have two little boys with peg tubes. MIC-Key's are the best. My second son had a bards at first and had nothing but trouble but now he has a mic-key and it is so much better.

Loretta - posted on 12/11/2009

My son Noah had a NG-tube at birth until he was 5 months and then a G-Tube and a fundo was placed after that. He had a trach tube in which it was hard for him to swallow. He still had his MIC-KEY button up until he was 4. Now he is eating anything and everything...We started to wean him off of it when he was 3, only doing night time feedings and having him eat small amts through out the day. We let him eat at his own pace, and eventually he got the hang of it.

Tiffany - posted on 12/10/2009

My daughter had swallowing problems as a result of being a premie. She got a MicKey and Nissen when she was a month old and had it until she was almost 2. She's now 26 months and eating great. We are so lucky and I understand the trials of leaky buttons and late night spills- not to mention the dreaded Foley catheter when it comes out. I wish I had found this community 2 years ago to help through the tough patches. But, I am happy to offer support and hope if I can be of any help to other moms.

Cynthia - posted on 12/08/2009

my new born has been on a feeding tube for bout 3 weeks now after her open heart surgery and she will keep it till her next surgery at 6 months , i would like to talk to other moms with this as well as if ne one whats to ask me anything .

Annette - posted on 12/08/2009

my daughter is 20 years old and she had a fundo also but she kept having a break threw so they did a double fundo they wrapped it twice so it would break threw she has had 34 surgeries now so we have had a long road but it was worth it she is such a blessing to all of us. if I can help anyone get threww some of there trials let me know i needed help along the way and i am always willing to help in any way i can.

Denise - posted on 12/08/2009

My daughter has had her g-tube since she was 3 weeks old (she's 3 years old now). She has tracheoesophagal fistula (her esophagus was deformed at birth) so she hasn't ever really eaten by mouth. She also has a fundo because of severe reflux and aspiration. We've also been through several speech and occuapational therapists with no success. We've been told her refusal to eat is a behavior thing now.

Annette - posted on 12/07/2009

yes Brittani thinks it is funny to disconnect her g-tube also and yes it is a big mess. but you know i feel great to clean up those messes because at least she learned how to unhook it it is a mile stone that the doctors told us she would never be able to do anything and she can and she can laugh about it. she has a personality of her own.

ANGELA - posted on 12/06/2009

MY DAUGHTER HAS A G-J TUBE IN I'M TRYING TO GET A BETTER UNDERSTANDING OF THIS TUBE AND THE FEEDINGS..

Rebecca - posted on 12/06/2009

my daughter who is 16, has had a mickey in since she was 5. She has CP, seizure disorder, and a multiple of other disorders. She has had her formula changed twice and has had many accomplishments with her weight. Although, she does try to help feed which can be a mess and she thinks is funny or when she disconnects her feeding tube at night and makes an even bigger mess. But wouldn't trade it for the world.

Annette - posted on 12/06/2009

hello I am a mother of a handicapped child well shes not a child anymore she is 20 years old she has had a mic-key button sense she was 2 years old I guess you can call me a pro ha ha ha!!! My daughter has went from a bottle to a g-tube so it is pretty much a part of our lifes.

Suzanne - posted on 12/06/2009

My son has a mic-key PEG and has also had a Nissens. He had the PEG put in because he was in danger of aspirating and had had a few chest infections so needed to protect his chest. The Nissens was for reflux. He was a good weight but because of his mutiple disabilities needed to protect his chest foremost. He had is 3 and 1/2 and had the operations 8 months ago.

Melisa - posted on 12/04/2009

My daughter has had a mic-key g-tube for 3 years now. She also had a fundo done when the G-tube was put in because of her severe acid-reflux. We also think it was the best thing we could have done for her.

Terry - posted on 12/04/2009

My daughter has had a MIC-Key button in since she was three months old. She is now 2 1/2. She did the same thing. At 1st she ate great than all of a sudden she stopped, than she would eat again. So, after being in and out of the hospital for 3 months we had the g-tube put in. It is the best thing I have ever done for her so far. She don't eat anything by mouth but she gained 12lbs. in two months and is a happier child. At least we can keep her nutartion up.

Melanie - posted on 12/04/2009

My son is due to have nissen fundoplication and a valve put in in mar 2010. I'm hoping things go smoothly. Any help on this are would be greatful xx

Andrea - posted on 12/03/2009

MY DAUGHTER HAS HAD A MICKEY FOR ABOUT 5 MONTHS AND WEVE SEEN HUGE CHANGES IN HER.

Amy - posted on 12/03/2009

My son has had a MIC-KEY button for almost 3 years now, and is doing well. He got the feeding tube because of failure to thrive, but we are working on weaning him off of it. As of now, he only uses it for water at night -- just for extra fluids, and we are starting to reduce that also. We have had lots of help from various medicines, feeding clinics, nutritionists, GI docs, speech therapists. When he started with the MIC-KEY button, he was taking about 2 oz. by mouth. Obviously every child is different and has different diagnoses, but there is hope that things will improve. Just keep working and try to stay confident.

Jennifer - posted on 12/03/2009

My daughter has a gj tube, it goes into her small intestine because of a reflux disorder. they said orthopedic doctors are gonna work with her to get her to eat she only 8 months

Janet - posted on 12/02/2009

My son has a G-J tube, He is 21 months old, and has had it for 9 months. He had o have multiple surgeries and He got the feeding tube to help him gain more weight. We are attempting to wean off of it now, but he is never hungry so he doesn't eat much

Karla - posted on 12/01/2009

My son John had a mickey button placed at age 8mths.. He is going on 5 now and we are still using it, having trouble still getting him to eat by mouth.

Sarah - posted on 12/01/2009

My son has one as well....it was placed at the age of 3 he is now 5 he has the Bard. I love it ...he has gained 23lbs since its placement..and he was also diagnosed as failure to thrive at 2 months old. What are your sons other diagnosis? And does he have any diagnosis?

Bobbi - posted on 11/30/2009

my daughter had her G-tube put in after her stroke 8 yrs ago. They wanted to put the nissen in but I refussed it because it is more miserable for the child then help. My friend had it done for her son and I think she regrets it now. feel free to contact me if you have any questions. Bobbi