| Name: cheryl | Date: Sep 9th, 2009 1:59 PM |
| 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... ↑ |
| Name: Racheal | Date: Sep 16th, 2009 4:12 PM |
| My son just turned 3 in july and has always had a g-tube and had bad acid reflux. Reflux was so bad he almost passed away. He now has a nissen fundo. he has been approved for no liquids by mouth but can have stage 1 babyfood. I am to scared to start feeding him on the account of microaspirating. Any tips for a scared mom? ↑ |
| Name: peaches | Date: Nov 14th, 2009 3:11 AM |
| i have a 15 month old she has had a feeding tube since she was 2 months old she has acid reflex and she can't eat or drink anything she vomits it up they don't know what's wrong with her she had 5 surgery and she been losing weight and her sugar goes up and down every test that they did on her comes bk normal they wants us to go to ohio cuz they pretty much have given up on her it's been hell she on 3 different meds, 3 times a day she is really happy baby not really growing she is off her chart she weights about 22 lbs and 6 onces, she also reflex in her sleep then she is up every half hour and she can't poop it hard for her to push it out and right now she is not really peeing a lot so now we have to take her to Pittsburgh on tuesday ,well that's pretty much going on right now if anybody has had this problem please let me know thanks ↑ |
| Name: Kimberly | Date: Nov 19th, 2009 11:20 AM |
My daughter has had a feeding tube since 5 months old and is not soon to be 5 years old. It is so hard since we finally get her eating better and she gets sick ... another set back. She is also about 32lbs. at almost 5 years old. I think constipation and lack of good BM's and maybe she still has a little reflex ... which was really bad as an infant and until she was 2 years old. She is starting to learn how to eat different textures and doing ok with them. I feel at a loss with all the colds and phelm ... it really sets us back. I tried to start with removing one tube feeding and taking those calories and replacing them with 2 crackers and high calorie cheese spread. So she would eat that in the day and it would eliminate me tubing her at night. Any ideas for me let me know. We have a great speech therapist, and those are hard to find!
Wishing you the best!
Kimberly ↑ |
| Name: Erica | Date: Jan 21st, 2010 3:20 PM |
My son is 9 months old and has had medical issues since birth. they have recently found out that he tested positive for pepsin in his lungs and now needs to have surgery to correct it (fundoplication) I am new to the medical talk. Has anyone child have the fundoplicationn? Do you know if he will need to have a g-tube b/c of the surgery? He has been admitted before for failure to thrive b/c of his weight loss and has troubles eating to this day. If anyone has had anything like it please email me and we can talk. He has been seen by different specialist and has 2 therapist that come out to our house to help too.
erica ↑ |
| Name: Jami | Date: Feb 20th, 2010 4:53 PM |
| My son was born 8wks early b/c of preeclampsia and hypertension caused by pregnancy. He was 4 mos old when my husband found him blue in his crib. He began breathing again, but the lack of oxygen resulted in severe brain damage to almost every part of his brain. He cannot talk, sit up on his own, or walk. He was 5 b/4 we did the g tube and nissen surgery. He ate by mouth b/4 this, although not well. he weighed 24 lbs when they did the surgery. His mickey came out 2 ties in the last three days. Scared me a bit. Put it back in and everything seems fine. He is now on the ketogenic diet to try and cut back seizures, so we can cut back on meds hopefully. I understand what the lady posted a few months back about her son on phenobarbitol for the seizures and crying constantly. My Travis did that as well, he was on the pheno from the time he was 4 mos when the injury occured until he turned 3. Then the neurologist switched his meds and stopped him cold turkey. He screamed in withdrawal for 7 days. I was an emotional wreck. Somedays even now I cry at the drop of a hat. I am his mom and I'm supposed to make things better, and I can't fix this. I feel guilty somedays b/c you can only hold him when they cry and scream for only so long, and then I just have to put him in his bed and turn on classical mucis and let him work it out. The dr.'s said it could be from the cp, or the seizures. Both a result of the anoxic injury. Our Neurologist at Vanderbilt in Nashville said that the seizures do not hurt him physically, but imagine being asleep and someone shaking you awake and then you get upset and cry. Then there's the possibility of the muscles spasming causing him to be upset. You give him what meds he's allowed by body weight and still no better. Sometimes floating in a hot bath helps, sometimes it doesn't. I am a stay at home mom with him, so the stress level can get up there. Just wanted to say that I understand how every one of you feel. People with "normal" children do not understand what it takes to be a mom or dad of a special needs child. Travis has no life expectancy, the dr's cant tell us how long we'll have him. He may outlive all of us. But we have met a few other parents with children like Travis and they passed between 15-18 yrs old. He's 7 now. I make myself take it in 5 yr increments, we made to 5 so now we have to make to 10. So on. I just do my best to not lose my patience, it's not his fault, and I know that I am a good mom, no matter how hard I am on myself, or how much he cries and I can't fix it. You do what you have to do for your child. If there's anyone out there new to this experience or might have questions that I may be able to help answer, as a mom who's been dealing with this since he was 4 mos old feel free to e-mail me at [email protected] Please put reference to Travis or this forum in subject box. Keep up the hard work. ↑ |
| Name: Ron | Date: Mar 18th, 2010 6:53 PM |
I (we) have been through it all with my daughter. She is now 14 and just passed 80 lbs. finally and is scheduled for surgery to close the g-tube hole after going through 6 weeks of mess, burning and pain while waiting for it to close on its own.
We learned a lot over the years and had many setbacks. She had the nissen surgery at 3 months of age originally because she would not take a bottle nor swallow well. The reflux permanently damaged her larnyx and she has a raspy thin voice to this day. She had to have her nissen (fundo) re-done at a better hospital at 3 years as the original one herniated. The surgery though is still the best way to go and stopped the reflux. In fact she couldn't even burp until she was 10, which she was very proud of. Oh yeah, she started swallowing at between 2 and 3 years and though she still needed the assist of the night feeds by the g-tube, it gave us hope that she would go off the tube someday, which is this month. A bit of advice is that you should ask them to do the closure by surgery without the misery of waiting the customary 5-6 weeks as hers had been in for 14 years and it did not even want to close on its own. She missed nearly a month of school during that stupid experiment, and only after repeated visits to the doctor did they admit..."Duh, I guess we will have to close it surgically". The office we went to for many years did very little to bring about this day where she was growing well enough to have the tube removed. It was us that kept up the pressure for her to eat, try new foods, and to be conscious of her own condition that she would take control. We hooked her up to the machine up until she was 13 and she knew it was up to her to do that after that point, which she did. Fortunately, in her case, she started really chowing down when she hit 14 and took a liking to Burger King Whoppers of all things! She is 4'-10" now and passed 80 lbs. and for the first time in her life has some meat on her bones. It is really tough on a kid to be as diiferent as this un-named syndrome is on children. She is catching up though. There is a light at the end of the tunnel. There were times I could barely handle the heartbreak and can recall running the to the hospital emergency ward when she was 3 months old in the middle of the night sunctioning her airway with one hand and steering with the other trying to keep her breathing. We were told she may never grow up, be normal, or even survive on a couple of occasions. She overcame it all. She straightened out her crooked little legs and neck that were not straight at birth (full 9 month - not preemie) She had a VSD - a small hole in her heart which closed on its own, with no further problems. The worst thing was the slow growth and watching her friends mature. She did grow a lot in the past year and is finally catching up. She will always have the bad vocal chords which were damaged by the reflux. My warning to parents is to get the nissen Early so the esophagus does not get scarred up like hers did. Also, the tube through the nose can only be a short term answer, and that will disfigure the nasal passage if you do that for too long.
Anyway, I searched for years before this internet access got so good that you could find other people with these same type of kids. On that note, I would love to help answer questions since I have nearly 15 years of experience with it. After all the years doctors still can't pinpoint what causes this syndrome and we had her tested for everything known to mankind. They even took muscle samples from her leg when she was a baby. I could (and should) write a book.
Ron Wrolson
Tacoma, WA
[email protected] ↑ |
| Name: Lori | Date: Apr 18th, 2010 10:19 PM |
| My friend runs an orphanage in India for disabled kids. One little boy is very sick and needs a MicKey tube. I can buy one and ship over but I need the size. They don't have them in INdia so she doesn't know. All I know is that he weighs 25 pounds. Can someone help?? ↑ |
| Name: anna | Date: Sep 9th, 2010 6:36 PM |
| Name: neela | Date: Oct 11th, 2010 11:29 AM |
| i have a little boy who used to be on ng tube ,peg and then mickey button .he now eating by himself but still only weighs 32 pounds and he is 5 and half . ↑ |
| Name: sal | Date: Oct 19th, 2010 5:52 PM |
I also have a 5yr old who has reflux and has a fundo We just had the g-tube removed in May .
My daughter dislikes textures as well, but it is getting better. She does not like large mouthfuls of food either. She also only weighs 34lbs . ↑ |
| Name: Jamie'sMom | Date: Nov 12th, 2010 11:27 PM |
| Hi everyone.... First time writer long time stress sufferer! Just going through all your ladies posts i feel very at ease. I knew our family wasnt the only onewho delt with these kind of stresses and countless doctors trips and surgeries and weight checks, But i have never actually spoken to or reached out to others in our same position. So i would like to start off by introduceing us a bit. Jamie was a 2.5 Lbs 30 weeker who did extremely well in his first month at the nicu. It all seemed to go downhill from there. By four months he was haveing seizures twice a day at least and was dependant on Ng tube to sustain a 5 Lbs weight. He was constantly in hospital for aspirated pnamonia due to his Gerd issues. He aswell has severe Asthma and dermititis which turns very nasty very quickly with just the slightest cold! He is Immuno difficient so if any siblings come home with a cold its alllll over for him.He was diagnosed with EE this past year and is now limited in the things he is allowed to eat.. and of course what he wanst he cannot have!! GRrrrrr He has always been under the third percentile for his weight and at age three was fitted with a gtube. he is now turning five next month and is still way way underweight, for all those out there saying your kids are ubove thirty pounds quttos to you!! very difficult job!! We are lucky to be twenty five lbs and thats only if we can stay healthy enough and out of hospital long enough to gain anything! If your situation is anything similar to ours or even if its not and you just needed someone to talk to.... Im always around and finally open to communicating with others about our jurneys. e mail me at [email protected] ↑ |
| Name: paige | Date: Feb 6th, 2011 8:08 PM |
| My 6 year old is about to get one does it effect there speech? ↑ |
| Name: Tina Ouellette | Date: Mar 23rd, 2011 5:58 PM |
I work with a woman in her lat 20's with lissencephaly('smooth brain' ) and she is tube fed with Jevity. I find around lunch time when she is fed minced food orally, she begins to have small spasms and what seems like mini seizures and it can continue throughout the day.
Does any of this sound familiar to you? Is there anything I could be doing to prevent this from happening, at her parents request, she is not taking regular seizure medication, just PRN.
[email protected] ↑ |
| Name: dakotacody | Date: Apr 22nd, 2011 4:28 PM |
Hi, my Son was born 12-2-07 with C.D.H. he was at chicago children's memorial from the day he was born until he turned 9 months. he needed a trach with vent support, came with with that and a NG tube. At a year and a half he was not gaining the weight needed to wean off the vent. he was and still is on prevacid for bad reflux, he Got the nissen/ mic-key button, now at age 3 he is vent free/trach free..
Now we are dealing with the mic-key button feeds, his day feed is 200Ml rate 95 during naps. for the past 3 months he has been eating so good, finger foods and other foods i can feed him. he is still learning how to use the9toodler) spoon/fork. he use to drank from his sippy cup. now he will not touch it, When i try to put it up to him he turns his head. i dont want to MAKe it, knowing that would make this worse.. we do have some nursing and i am hoping it's not a nurse who gave him to much by the sippy and make this turn into something bad. when wehave no nurse during the day he will eat like crazy by mouth, his finger foods and eat for me. when the nurse trys to feed him he wont.
I was wondering if anyone has any ideas. he had speech from age 3 months until age 3. now in preschool he has speech.. the talking is also what we're working on.. i cant complain to much, since he has come so far.. and now its just the tube feeds..
Thanks beverly (codys mom)
www.codysfoundatio
n.com
www.dakota-cody.com
↑ |
| Name: sherif | Date: Aug 15th, 2011 1:07 PM |
| Name: Fati p. | Date: Sep 20th, 2011 4:13 AM |
| My name is Fatima Patel. I am doing my Master's research on epilepsy at Depaul University, Chicago. I am interested in opinions of parents who have kids with epilepsy and a G-tube. I am trying to network with parents to help me complete my research regarding epilepsy and gastrostomy tube (G-tube) The survey is really easy to complete, only takes 5 min. The link is as follows for the survey: https://www.surveymonkey.com/s/Y35N9NF. Please help me connect with parents to complete this very important project. Please help!!!Thank You in advance. ↑ |
| Name: twinmom2011 | Date: Dec 12th, 2011 12:11 AM |
Anyone have a kid with a feeding tube in Oregon? Anyone knows anyone that has been weaned at the OHSU feeding clinic? Please share.
Thanks ↑ |
| Name: dongluavang0086 | Date: Jan 3rd, 2012 4:29 PM |
| Name: josette | Date: Feb 9th, 2012 6:35 PM |
please email my grandaughter,she needs the support and info. Her son 16 mo. an havin a G tube 2/23
[email protected] ↑ |
| Name: Brenda | Date: Mar 1st, 2012 11:37 PM |
| My son is 4 mths and has the Mickey button. When we do the boulus feeds I do it slow. They told me at Vanderbilt to take 20-30 min with each feed. ↑ |
| Name: Brenda | Date: Mar 1st, 2012 11:40 PM |
| My son had to have the Mic key button put in when he was a few weeks old because he was aspirating and now at some of his feed he cries and screams like he is pain. He is 4 months old now. They wanted to start the continuois feed but when we went to the pediatrician he has went from 9 lbs 7 oz to 9 lbs in 7 days. I am a nervous wreck and don't know what to do. They are going to admit him when a bed comes available anyone else with this problem ↑ |
|
|
