Posted By Posting
Jul 16, 2008
cara615
Update about Cole and his NG tube
For those of you who haven't read the back story - here is the link to the thread http://www.reflux.org/reflux/webdsc01.nsf/vwID/VASV-7FMJPU?OpenDocument Well, we had a frenulectomy scheduled for July15th. Since birth we have known that Cole has had a tongue tie. He didn't latch very well but all the Drs. said it was fine because he could get his tounge over his gum. We asked to have it clipped for fear of speech issues later on but our pedi assured us that it wasn't necessary. When Cole stopped eating altogether we asked if it could be the tongue tie and and the pedi said no way. The GI said absolutely not, he hasn't seen that as ever an issue. It was most probably reflux. So Cole was put on reflux meds and got an NG tube. Fast forward to June. We took Cole to a feeding OT. She mentioned the tongue tie. We looked into it and finally got referred to an ENT. He agreed that is should be cut!! UGH!!! Well I made the appt and was told by the OT and the ENT not to expect any huge results in feeding after the frenulectomy. So I wasn't. They brought Cole back to me and he had another NG tube placed in his nose after the surgery. However, he was so ornery from the anesthesia that he pulled the tube right out! Well, he needed to drink 2oz of pedialyte in order to get discharged so I tried a bottle of it. Well, wouldn't you know he downed the whole thing and then took a paci! I was crying from joy! I got him home and he took 4oz of formula and then another 2oz 2 hours later. He has been drinking normally ever since! I took the NG tube out this morning and am in shock that it could be such a huge difference in a matter of one day! IT WAS THE TONGUE TIE ALL ALONG. So to all of you mommies out there with feeding aversion babies that have tongue ties. GET THEM CUT!!!! IT truly helps. Dont' let the doctors tell you other wise. This was a huge mistake on my part for waiting so long and listening to all those idiot doctors!!! I am over the moon with happiness right now!!!
Jul 16, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
Wow! that is amazing!!! I have had experiences like that. Mommy knows best! They truly truly do. Doctors should listen to mom more. I'm so glad that it made such a world of a difference for your sweet Cole. I hope it continues to go so well for him! -Sarah
Jul 16, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
WHOOHOO!!!!!!!!! Great news. So happy the NG was short lived for you both!!!!!
Jul 16, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
I feel for you. My son too had tongue tie. I tried painstakingly to BF him for 3 weeks while in the NICU. But, he would never latch. He was also a very messy eater on the bottle. No one said anything about it. At 2 mo. of age I called a LC because I was going to relactate and try and BF him again. She took one look at him and said he is tongue tied. wtf? so, after 3 LC at the hosipital and 5 NICU doctors and the pedi no one metnioned it. ridiculous! all and i mean ALL babies were checked for this back in the 70s when BF was big. Now, most people don't even care to look becauxe they think it no big deal. 2 days after the frenulum was cut he was eating much better. didn't help with his aversions really but helped with eating a lot. i'm so glad you took matters in to your own hands. so wonderful that the NG is needed no more as well.

i'm a firm believer these days that most doctors are idiots with more schooling than I. very frustrating indeed.
Jul 16, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Photobucket
I am glad Cole is doing so well!!!
Jul 16, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
yay for a happy ending. We could have lost our dd if we had listened to her pedi (and that's another story!!) Go, mommy instinct!
Jul 16, 2008
ann_riley
WONDERFUL NEWS!
SUCH WONDERFUL NEWS and I echo the writer prior to me....yah for mommy instinct!!! What is depressing is how much you worried and fought for this when all along you were right. I too asked my paed about my son having reflux MONTHS AGO and he just said 'no, I can't see it' and thats it....months later and surgery and meds, he does have it....what is going on with the doctors??? overworked? not listening to mothers? Anyway, I am soooooooooooooooooooooooooo really truly happy for you, enjoy your precious baby!
Jul 16, 2008
nanibear
Does this ever go away?
hello
I am so overjoyed for you and your little. I can imagined how excited you were when Cole began eating on his own!
Jul 17, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
YAY! I think the tongue tie can make a HUGE difference (IMO). Good for you for going with you instinct! I am so glad that Cole is doing better!
Check with your
doctor first!