SO ANYONE OUT THERE HAVE A CHILD WHO CANT SWALLOW, OR HAS A TRACH AND FEEDING TUBE???

JAY - posted on 06/12/2012

hi Jocelyn, my son had a sucking and swallowing problem at birth, he was 4 weeks in ICU with a feeding tube because of it, doctors told us he would never beable to feed from his mouth and will use a tube or a peg in the tummy for feeding for the rest of his life, i didnt want to hear of that so the day he cam home with the tube i had it then removed by the second day, i just could not deal with feeding him through the tube it killed me, it took hard work and patience and i use to do stimulation on the mouth and checks take 2 fingers and stroke from his mouth outwards 4 times on each side, then put a glove on and do it from the inside, take your 1 finger rub it around his mouth on the gum line and lastly stroke the tounge 4 times, i did this everytime before a feed, i saw a speech therapist do this to another child with a cleft pallet so i thought hell if you dont try you never know, never the less, he sucks and drinks very well now, he does 180ml about 6 bottles a day and eats porriage of a spoon and swallows, there is hope just keep trying, my son loves his food now and sucks his hands, toys, dummy and he has CP and brain damage.

Jocelyn - posted on 06/10/2012

Dear moms, Shoot! I'm crushed!!! My son is only 1 month corrected and having these issues but I was hoping by the time he was 8 months or sooner he would start sucking and swallowing. Have any of you heard of any baby with these issues outgrowing them?!! What tyes of oral stimulation do you guys do?

Tiffany - posted on 06/08/2012

hi jennifer my name is tiffany my son is 5 mo and we having problem too he cant swallow and he has a trach and gtube we are in the pPICU , we been her for 44 days i would like to talk to u more so here my email cegh2012@gmail.com

Jessica - posted on 01/28/2010

My son also does not have a diagnosis. He is going to be 4 in April. He was delivered by emergency c-section and was not breathing. He did not have a suck reflex and needed tube feeding at birth. We were able to get him to feed orally after a few days and were sent home. His feeding was very slow, he would tire and quit after 1/2 oz. He could not get enough nutrition and quit growing completely. We started the tube feeds. He can eat, but now he won't, and nobody can tell us why. It is enormously frustrating!

Celeste - posted on 01/27/2010

My daughter was born at 26 weeks. She had a trach placed in Sept 2006 and recently had surgery to repair her airway so she could have her trach removed which happened May 2009. She has bronchopulmonary dysplasia which is chronic lung disease fancy name for bad lungs and possibly bad asthma. She still doesnt eat any table food....has a very strong gag reflex and is currently taking only stage 2 baby foods. No mashed potatoes or anything pureed. It gets frustrating. Im currently trying to get her therapies to be desensitized but if that doesnt work im lookin into other options to promote better weight gain for her. She will be 4 in June and weighs only 31 lbs.



In other words you are not alone. Just pray and be patient that things will get better for him and if you ever need to talk you can look me up on here. Send me a message or we can exchange numbers. Its always nice to have someone who you can talk to and I hope things get better for you.



Best wishes

Amy - posted on 01/21/2010

my daughter just recently had her gtube removed but she had it since 3 wks old she has cleft palate her syndrome is called digeorge syndrome and von willebrandts disease

Jennifer - posted on 01/21/2010

he has had the nissen-fundaplication done twice, he a bowel obstruction at almost two months old, he had a trachea put in at 4 months and eye surgery at 6 months old, so he has defentliy been threw hell and back since birth, but he is a very happy baby and gets therapy 2 times a week, but hopefully we will get there we got god on our side for sure, and thank you all for help and suggestions please let me know if you have more, thanks....

Jane - posted on 01/20/2010

HI I dont know if i can assist my daughter Kirsten is now 13 she was on a feeding tube for 6 months as she could not suck at all due to low muscle tone and her disability. her diagnosis is under investigation at the momment but she was origanlly diagnosed with Arthgrophosis. My advice to you is to get alot of toungue and cheek exercises is in, by putting your finger in his mouth and playing with his tougne and cheeks. What surgery did he have? Hang in there it is hard but they are worth all the love

Daisy - posted on 01/19/2010

My youngest son 4 now also has a feeding tube,I had a placenta abruption he was born at full term so the reason for that is still unknown. But he was also in the N.I.C.U. for alomost a month after his birth, He had sucking problems and really bad reflux from birth, he stil does so he got a feeding tube at 5 months of age. He aspirates when he swollows even the least bit of food, so we have to be very careful when we allow him to have a taste of a bit of food. He is still a very happy boy. If ever need anyone to talk to feel free to talk to me, he was hospitalized 8 times before he even turned 1 so I can relate to many of us here.

Carissa - posted on 01/19/2010

I have 2 girls who were born with CP. Nether of them eat through the mouth. They both have feeding tubes (mic-key buttons). My oldest is 10. I have been doing this for awhile. Feel free to ask if you have any questions. I will help if I can

Quishan - posted on 01/19/2010

I have a twelve years old son, who have cerebal palsy, who was born at 25weeks, my son had his feeding tube since 1997 and his trachea 2008. My son had the G-tube put n because he kept having gastric reflux, the milk was backing up n his lungs and it would cause him to aspirate, so I'm very grateful that he had it done and doing very well, I dont have to worry anymore about him aspirating anymore!!!

Melanie - posted on 01/19/2010

My son has had trouble swallowing since his birth 2yrs ago. He's having his 1st surgery in March to tighten the hole in his stomach and he will also have a tube fitted then too. He was diagnosed as having Bulbar Palsy in his throat and jaw which means his muscles can't handle lumps. xx

Nicky - posted on 01/18/2010

Hi my son has never been able to swallow. He's 9mths now and he has a NG tube we are waiting for him to have a G tube this year. We've had loads of genetic tests done and all have come back normal. We went to Great Ormond st hospital in london in june 09 and he had a MRI scan which showed PMG (Many small folds)and Schizencephaly ( clefts in the brain) With all these problems he's still a happy little boy.

Jennifer - posted on 01/17/2010

THANK YALL SOO MUCH FOR THE KIND RESPONSES, AND I HOPE YOU ALL GET THE ANSWERS YOURE LOOKING FOR, and ill keep you all updated our journey!!

Casey - posted on 01/17/2010

My son is 19 months ols and is on a g-tube. Hes had swallowing issues since birth. They say its from his large tongue and his hypotonia in his trunk and neck muscles. He can swallow formula but other than that nothing else. It is very difficult, and we regress a lot with swallowing problems which is why we got the g-tube. We have seen genetics for 1 yr now and still don't have a diagnosis. ! wish you luck and I hope you get answers soon!

Susan - posted on 01/17/2010

Have they ruled out Mitochondrial Disease? I"d like to invite everyone to check out a new weekly series coming called "Exceptional Family TV" just follow this link and then past it on http://bit.ly/Exceptional_Family_TV

Belinda - posted on 01/16/2010

Hi, my 1 yr old also has a feeding tube. He was born with a VSD (hole in his heart) and spent 3 months in the hospital. He was born in the hospital in our small town and then transfer to another. He was in a total of 4 hospitals before I got to bring him home. While in the hospital they did all kinds of test and never found a reason for him not eating. They said that with a VSD after a month or so they eat on their own but he didn't and still hasn't. My son won't suck, his swallow is fine. I have been looking for answers myself. I hope everything goes well for you.



Belinda