Posted By Posting
Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Silent reflux- how do you know its getting better?
So Hunter has silent reflux. He doesnt wake up with it at night( he is 12 weeks) We are on Gaviscon, Domperidone, and Omeprizole. Thinkg is, I dont know if its working because he still doesnt like to eat, but my feeding specialist said it could take months to overcome that. How can you tell when silent reflux has gotten better and the pain is goinbg away? He still coughs and chokes when feeding.
Oct 12, 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
If you are seeing coughing and chocking while eating I'd ask for a swallow sutdy to "see" what is going on while he swallows. His swallowing coudl be incoordinated. He would ned to work with a ST on that to help.

If he's not waking at night then I'd say you doing pretty good. That is a great sign that things are doing better. but as far as silent reflux, are you seeing wet burps or swallowing??? We used to see the swalowing during the day about 3 months ago. We upped Jedd's meds and it went away. So for him that was the silent stuff. Weird but, we hadn't dealt witht thesilent sutff until then. For the most part he'd just vomit it all back out...LOL

And yes, unfortunately it can take months and years to overcome eating issues. We are in the same boat. It has taken a year to get Jedd to swallow stage 2 foods off of a spoon and to swallow lizuds when I sqeeze them into him.

Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Yeah, he def does the wet burps. I can hear him swallowing sometimes. I can already say that he is incoordinated with his swollowing and feeding in general. Its usually very frantic with fast breathing and then the choking and gulping and then he gets the air and then he gets upset , starts to cry , rinse repeat rinse repeat.....you get the idea. Is that even a reflux issue? Dream feeds are much more rythmic and calmer (obviously cuz the boys sleeping !) What is an ST ?? What can they do exactly?
Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
oh, and sleeping has never really been an issue, so I cant say its improved. His only reflux symptom is this damn feeding. And God knows thats no better :(
Oct 12, 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
ST or SLP Speech therapist or speech language pathologist. Just about the same or slightly different.

I'd get an eval with someone to work on the feeding thing. and I'd make sure to get that swallow study. That can tell you exactly what is going on when swallowing occurs.

Do the wet burps and stuff only happen while he is eating???

if so it could be that it is a sign on an oral aversion. For us, the wet burps were coming on while Jedd was playing. versus while he was eating. While he was eating we'd see the gagging and retching until he vomitted and was competely empty again.

So, we knew it was silent reflux creeping up on us.

Have you done a Scope to see if there is any damage??? We had all sorts of test done before we deemed all of Jedd's issue as behavioral instead of medical. If there is damage all those things can point towards beign uncomforatble. Feeding will not get better until the medical stuff has all been resolved.

Oct 12, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
HI ama
Joslyn is sr'er too. She has been sleeping all night since 2 weeks old (she is now 6 months yesterday!!! HURRAY!!!) She is breastfed with 1-2 ounces of bm after each feeding by bottle. I have over active let down.... so that does not help her silent reflux choking, gasping, fast swallowing, gulping.... ect. Joslyn had a barium swallow done at 5 days old... but no swallow study. She is on Zantac. I can tell that she is not having as much difficulty now since she no longer has "grey faced" episodes. (HURRAY!) She no longer seems to be choking on her reflux. I can still, however, hear her reflux, she has wet burbs (not all of the time though) you can see her swallow real hard during the day too. She will eat better if she sleep eats (which is only a couple of times a week) and she will take a bottle way better than my (ummmmmmm) boob. She is now taking some solids... took those real well from the start. I asked her GI Doc when we would know when she does not need med anymore..... he said when we take her off meds and she is fine..... there is no other way to find out. Sad. She does have a weight gain issue (or lack there of. but we are working on it.......) This crap sucks huh? **Jacky**
Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Hello Jessica and Jacky!
Jeesica- Thanks for that. We have had him evaluated by speech and language . She saw me on breast and bottle and told me "lets focus on the bottle" Although he didnt take much during the evaluation he was calmer than usual. She didnt really see the worst. I def think Im going to ask for the scope. Because I think you are right, there is soemhting going on with that, and maybe thats why hes not responding to meds. Problem is, here in the UK its harder to "ask" for stuff to be done because its free health care, they decide what and when and they havent mentioned a scope yet. Regardless, Im going to be on the phone first thing tommorrow - Thanks!!! Jacky- I have a really fast ltdown as well. And like you Hunter always took the bottle better than the boob. Breastfeeding just never went smoothly (I had to use nipple sheilds as he couldnt latch) I thought it was always just a latching issue , but it sounds now that he had the reflux working against him as well. Does your LO have a bad appetite as well or just takes small amounts, or cries with food? All of the above apply to us , and Im always curious to hear stories of other "poor feeders" ;)
Oct 12, 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
Are you still NG tube feeding???
Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
No, that was only in the hospital. I tell ya , that tube feeding is so bitter sweet- I did nt have to fight him to eat,yet it made me so sad. Especially because he kept rubbing his face and the tube was all over the place. Has your LO aversion gotten any better since on the tube? And did I read that right, are you in Holland?
Oct 12, 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
Ya know alot of Mommies I know that do tube feeds make the sam eremark. that it takes soooo much pressure off of an already pressurized situtation. It buys TIME what people who do not have have tube don't have. The tube buys time. period.

Yes, we are almost in "Holland" LOL Jedd's eating is NO where near normal but life is much easier. We'll get there slowly and surely. :)~

You mentined that the feeding was a bit better after having the NG for a bit. That may be because the proper nutrition was being delivered and there fore he was stronger and more able to eat.Imagine going for days and days and weeks and weeks on end withotu the proper nutrition and then trying to eat. You just don't feel up to it, you don't have your strength. Kinda like how we feel after a really bad illness. Sometimes we have to "force" our selves to eat and then we feel better. KWIM???Hope that makes sense.

Intense in home work it what has brought Jedd out of his aversion. We have along long ways to go but we are soooo much better than we were a year ago at this time.

Not that you want to place a tube, but I do know many many families who do so for the exact reason of taking the pressure off of the situation to work on the oral aversion.

Oct 12, 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
LMAO
NO we are not in the real Holland. We are in VA USA...LOL I thought you meant that poem welcome to Holland...I'll stop typing now, I obvisoulsy need a nap!!!!!
Oct 12, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
I had to use nipple shields for the first week... she could not latch on and did not know how to suck either. But she learned how and all is well. She will only nurse for maybe 10 mins total (has been for about 2 months now.. before it would be 20-30 mins total.) she just gets so much that she does not need to be on for as long it seems. She is a pretty good eater (better with bottle and cereal... now is liking bananas.) If her reflux is acting up she will fight the booby. But when she is done with the first side she will pull off and cry at me.... turned away from me until I put he ron the other side. this can happen at 3-5 mins after beginning the nursing on the first side. Oh bfing is sooo much fun. Too bad I am too darn stubborn to stop! hehe. She does not have as many "bad" feedings as she used to. I think because I am not trying to force her to stay on each side longer.
Check with your
doctor first!