Posted By Posting
Jul 06, 2006
ellatessasmom
At first it was hard to see her throw up every meal, but now it is getting to be heart wrentching to see her gag, wretch, and throw up sometimes before, during, and for sure after every meal.
oral aversion, GJT feedings
Ella now has a GJ tube and we feed only into her JT and use the GT for venting. She still continues to throw up even with the JT and still will not eat. She is 12 months old now and have been seeing a speech therapist, O.T., and P.T. The speech therapist helps to teach her how to eat, but we think she knows how and just will not do it. It is so frustrating and painful to see her not get pleasure from food and to be in so much pain from throwing up acid and bile, even though she is on prevacid and now started her on Actigall. We just wish that we do not have to put her on anymore meds and put her through anymore invasive procedures. Has anyone heard of behavioral psychologist experienced in working with kids and oral aversions? If so, please share the wonderful knowledge you may have. thanks much Soon
Jul 24, 2006
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Feeding program or clinic
Hello! It sounds like and your daugher have been through a long journey. So sorry. It sounds like her case is quite complex. I wonder if you live near a city with a large hospital or a children's hospital . Often there is a feeding team or feeding clinic. some are in patient and some are outpatient. A team of drs, therapists and psychologists will assess the situation and develop a plan. Email me at refluxmom2@earthlink.net if you want to chat further. Jan
Jul 31, 2006
daoverdyk
Kayties Story
oral aversion
We can certainly sympathise with your frustrations. Our daughter has an aversion also she is six months old and we find she only feeds at night when she is in a deep sleep. Our daughter is on omeprazole which seems to be calming her acid, but not the reflux. Has your daughter had surgery? Does she have or had strictures that have caused her to have this aversion? Sorry to ask so many questions but I would like to know if our situations are similar? It does seem like it is psychological, because she knows how to feed but just doesn't want to. I wish you luck.
Jul 31, 2006
daoverdyk
Kayties Story
Similarities
Jul 31, 2006
daoverdyk
Kayties Story
Similarities
I have just been reading your story about ella. It seems that we do have many similarities, Our daughter didn't get her first oral feed until she was 4 months old. She has had a gastrostomy tube, nasal gastro tube, and nasal jejunal tube. Did the NG or NJ tube reduce the refluxing at all? Have you investigated any other surgical procedures? I guess you would have seen enough of hospitals though.
Sep 25, 2006
lee tc
feeding program / clinic
I sympathize with you. I have a 17 month boy with severe GERD, had surgery and G-tube and has a severe feeding aversion. We went to a local Behavioural therapist however our son's aversion was beyond his abilities. So we flew to Kennedy Krieger Institute in Baltimore for an assessment - they are meant to have the best program. We are now waiting for admission - we will be doing a 6-8 week inpatient program. Our goal is to increase our son's volume tolerance (currently it is only 5-6 oz) and get him off the G-tube (he is currently 70% passive drinking - which is a struggle each day to achieve). My son also will not eat any solids and is just starting to put things in his mouth. We have had all the tests and they indicate that he can eat and swallow - he just doesn't want to. Who new that things could ever escalate to this extreme! Let me know if you want any further information - Kennedy Krieger does have a good website. Good Luck!
Aug 15, 2007
scmomoftwo
Brandi ~wife of Chad~ 09-01-2001
Mom of
Noah (05-16-2005) Fundo, G tube, dysmotility of the stomach and intestines, sleep apnea
Jonah (03-06-2007) Reflux, apnea
Hi, I was reading what you've been through and it's a lot. I know you're frustrated. My question is what is making her throw up, retch, and gag. Something is making her full so she doesn't want to eat (or too painful). Have you looked into motility? How are her stools? What formula is she on? email me if you want polatty@atlanticbb.net...we've been the gj route but never failure to thrive. what meds is she on?
Check with your
doctor first!