Posted By Posting
Apr 03, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
Oral aversion-G tube? Nissen? Therapy?
Please help with your advice! My 9 month old daughter has fallen from the 15% to just below the 5% on the growth curve over the past 2 months, as we can't get her to eat enough. She takes some formula (neocate) by the bottle, but not enough quantity to keep growing. She will take small amounts of pureed solids from a dropper and occasionally a spoon, but very inconsistently, and appears to be on a feeding strike for the past week. She did have a nasogastric tube from 4-6 months that helped her reach the 15% from below the 5%, where she had fallen during her first 3 months of life. We have seen a feeding specialist and a nutritionist who have made some recommendations regarding increasing the caloric density of her food and some feeding tips, but it looks as if we need to make a decision regarding what step to take next. She has tried omeprazole, but it seemed to make no difference and we can't seem to get her to take it anymore. We did try reglan, but it seemed to completely dull her usual happy affect greatly. So now we have to decide between a G-tube and a G-tube with a Nissen, though we would really like to be able to work with someone extremely knowledgable and experienced with oral aversion and be able to avoid the surgery, if possible (though it may be too late). We hear it takes a lot longer to get a child to eat again, after G-tube placement, though the G-tube can be life-saving. Any advice? Thank you, Jennifer
May 18, 2006
liztwingirls
Liz Lyons
I have gone through this and still.....
My daughter is a twin the was born at 27 weeks and she has had reflux her while life. We also tried the reglan and Taylor had the same effects. Then we did prylosec and that had no effect. NOw we are on Prevacid (soluTab) she has only been on this for about two weeks and I think that I am seeing a little change. But I have also heard mothers rave about how well it works for their child. Taylor had a g-tube and nissen done May of 2005. SHe is now below the 3rd percentile. Failure to thrive. She is on Neocate one plus and we mix that at a 45 cal per oz. Whick is the highest it goes. and Is only 16 lbs. She will be two in JUly and way behind in her growth. I have also tried all teh bottles and therapy since she has been home from NICU. Nothing worked that is why I went ahwad with all of this. NOw the nissen is loose and is herniating. She WILL NOT eat a thing by mouth. So now we have to have this redone. I just do not want to put her through anymore pain but..... Needless to say I am getting another opinion and we are scheduled for one in July. O am not sure what you know about the effects that you may have heard but my daughter gagged and wreched all the time but I have heared that it happens with most cases. It is just hard to get used to. I would love to talk some more I know that it is alot to take in when a doc tells you that surgery may be in the future. In fact Taylor is getting another tube they are pulling the g tube and putting in a gj tube and this is supposed to stop the reflux. Maybe do some research on that as well. I know that I have and I still am. I would love to chat some more. If you think it may be eaiser to talk by phone let me know and I would be happy to get you my number.
May 20, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
Thank you, Liz
Wow, thank you for your reply...you are a strong mother in pushing through. It really does help me to hear your experiences. My husband and I were so torn about the Nissen, as we'd heard about the gagging and wretching that could occur. We actually ended up very narrowly escaping surgery. I think the prevacid solu-tabs WERE the key...finally...and I'd learned about them through this network of amazing parents. About 2 weeks after we began, Fiona began to drink her neocate so much more readily (about 26 kcal concentrate) and now 4 weeks out, she is taking formula like she never has in her whole life. Having addressed the medical issue, we started therapy 3x/week with a behavioral psychologist and have actually seen results. It's difficult (watching him hold that spoon to her mouth with head turning, etc.-'escape extinction' they call it), but it is working. After 4 sessions, she is eating about 3 oz of solids 3x/day! He sees many children with g-tubes, etc. and has had some great success. Know this approach isn't for everyone, but just thought I'd put it out there. My heart goes out to you. If I can help in anyway, please let me know. I'd be happy to share my number, as well. Jennifer
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.
fiona's mom, please help us
It helps so much to hear of your experiences. Our GI doc and pediatrician have told us that Ella - our 12 month old is not a good canidate for a Nissen, since she gags and wretches even without the Nissen. My husband and I are not too thrilled about it either, but what if does help. The hard part with all of this si we don't know until we try. Ella has a GJ now, we feed into her JT only continuously for 20 hours and the other 4 hours we hope she will try to eat. We have been seeing speech therapist since Jan 06 to basically teach her to like food and it has not help at all. WE also see occupational and physical therpaist to help with sensory integration. Are we on the wrong path with the therapist, maybe we need a Behavorial Psychologist. How did you find one and do you recommend anyone? We live in Minnesota. We are willing to try anything and anyone so we do not have to have anymore surgeries. Ella still throws up with her JT, now instead of calories, it is stomach acid and bile. It is just hard to watch her be in so much pain from throwing up. She is already on the highest dose of prevacid. Please help with any referrals or suggestions. I am so glad to hear that Fiona is doing so well, and that she is eating. I would love to chat some more, would you be willing to chat by phone? Thanks much Soon
Jul 07, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
To Ella's Mom
Oh, my heart is aching for you...so much to be dealing with every day! I do wish I had THE answer. I can share my experience, but am a bit at a loss myself this week. The prevacid was very helpful and I understand that your daughter is already taking it. We actually also did put Fiona on propulsid for about a month or so. We didn't really notice an effect with it believe it or not, but withdrew it about 3 weeks ago and things have been getting worse. The propulsid IS off the market in the U.S., so it really may not be a viable option now, but just a thought. We haven't decided whether to re-start it or not. As for the behavioral therapy, I think this made a big difference, though still seems not to be very mainstream in feeding disorders treatment yet. It appears the true 'gurus' of behavioral treatment reside at Kennedy Krieger Institute in Maryland (associated with Johns Hopkins). I would love to get Fiona out there, but we live in California and are expecting a newborn son Sept. 1st-ish and there is a long waiting list and it is quite expensive, from what I understand. Anyways, we found a person out here who had spent some time at Kennedy Krieger and worked with him 3x/week for 3 1/2 weeks. Fiona was actually eating about 6 oz of pureed solids 3x/day after this with an average of only one vomit/day...until about 1 1/2 weeks ago when we took her to New York to visit the relatives and now things have fallen apart. Hoping once she's back in her familiar environment and un-jet-lagged that her feeding will improve. Disheartening after some real success.
Jul 07, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
To Ella's mom cont.
But we will forge ahead. I would be happy to talk with you, if you would like. Feel free to e-mail me at jenfirestone@earthlink.net and I can get you my number. Take care and hang in there.
Sep 01, 2006
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
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Hi, My daughter Quinn is facing a Nissen surgery as well. She doesn't have any problems eating. My daughter loves food, but the pain and discomfort and how much she vomits is what concerns the doctors. She is dropping drastically on the growth chart. She has only gained two pounds in four months. Right now she is seven months old. I am so nervous about the surgery because Quinn is doing quite well without it other than the fact that she isn't gaining a significant amount of weight. She's a little delayed, but that's it. She isn't screaming in pain as often as she used to, but we still deal with the vomit. At least 2x daily she throws up a lot of food. Not to mention how often she spits up. She is on Reglan and Prevacid and is taking the maximum amount allowed at this time... and she is on Nutramigen. Our pediatrician is at her wits end. She says there is nothing else she can do at this time. She's on the best treatment for GERD. My question is, would it be worth while to go through with the surgery if she is happy? She is a very happy girl now that the prevacid is taking away some of her pain. I'm scared that the surgery will make things worse. My mother tells me that maybe we should do it, but she is just so happy at this time and I've never seen her so happy before. So, my question is, even though she is dropping in weight, should we still do the surgery if she is a happy little girl? -I'm so happy that Fiona is doing well on the prevacid. That is quite a relief. It has been a while since you last posted, how is she doing now? -Sarah
Sep 01, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
Response to Sarah
Oh, Sarah--how stressful. Fiona, as well, is a real social butterfly. That's a tough decision on the Nissen. I might recommend placing another recent post to get other parents' feedback. How low on the growth charts is your daughter? Everyone's anxiety was at a peak with Fiona when she fell below the 5th%. I have heard both positive and negative info. on the Nissen, so is a difficult choice. I keep hearing that reflux usually improves by 8 months and Quinn sounds so happy...would be a tough choice to go ahead with surgery. Our docs real concern with Fiona dropping below the 5% was brain development and growth. Not sure if this helps, but I'm thinking of you. Fiona is doing pretty well right now, but solids are still really challenging! We actually have an appt. at Kennedy Krieger for an evaluation in mid-Sept. Believe her weight is around the 10% now. We are happy that we were able to avoid surgery thus far, but takes an extraordinary amount of time (and stress) to keep her where she is growth-wise. Haven't been posting much, as just had a son 6 weeks ago. He was actually 6 weeks premature, so we are very busy...and yep, at 4 weeks of age, he developed reflux! Take care, Jennifer
Sep 04, 2006
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
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To Fiona's mom
Jennifer. I'm so sorry to hear that your son was born 6 weeks premature. I know that it is difficult to have a premature baby... especially one with reflux. Was/is he in the NICU? Quinn spent about two weeks in the hospital. That's where we discovered she had GERD and a bunch of other things! Anyways... I know solids are a difficult thing to introduce. We have lots of probs feeding Quinn her Gerber jar foods because she can't keep much of it down. Quinn has dropped below the 25th percentile. If she keeps at the same weight, she will be around the 10th percentile in two weeks. She will be eight months in two weeks and we have another docs appointment around that time as well to weigh her in. It's a drastic difference because when she was four months old, she was in the 75th percentile. That is why the doctor is just a little concerned at this point. Because it is a drastic difference and she has been a little slow at her milestones. Congratulations on the birth of your son! I hope you don't have too many problems with his reflux. HUGS! -Sarah
Sep 08, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
Reply
Hi Sarah, My son was in the NICU for 8 days and I was so thrilled when he was breastfeeding normally for 4 weeks. I thought we avoided the reflux trait the second time around, but no such luck now. I do feel grateful to have experienced the 4 normal weeks, though. Seems like it would be a walk in the park to have a non-refluxer child. Good luck at Quinn's 8 month weigh in--I'll be thinking of you.
Sep 09, 2006
corrington300
Mom of 5 yr. old with nissen and G-tube of 4 yrs.
Advocate for Nissen
Hi everyone, I usually don't take such effort to get into forums like this, but I felt like I needed to state the benifits to a Nissen and Gtube. My son, Clinton, was born at 27 wks. gestation. He had MANY medical issues, and was life flighted to Primary Children's medical Center where he satyed in NICU for eight months before coming home for the first time. He had a Ng tube and quickly learned how to pull it out (making me quickly learn how to place it back in.) He came home on 24 different medications, including Reglan and Prevacid. He constanlty threw up. He was back and forth in his weight gain and the anguish of placing and replacing that tube daily was really wearing on me. I was TERRIFIED to put him through that surgery!! I did not want to do that to him, he'd been put through enough already. We really had no other choice, he underwent the surgery soon after his first birthday, and though he continued to gag, he never threw up again! He has gained weight consistantly, and was able to begin bolus feeding up to 12 oz. at a time. He is now 5 yrs. old, still with gtube, but trying to take his first bites of solid food. He has all but stopped the gagging, and we are able to give him night feedings witha pump, so that he is more hungry during the day, which makes learning to eat more likely. Every situation is different, and I feel that frustration and fear for all of you, our prayers are with you and your children. Just know that there are benifits to these medical procedures, and that one day of fear can lead to a lifetime of better habits for our kids.
Sep 18, 2006
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
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Update
corrington300, it sounds like you have had a very rough battle. Like you, Quinn has had many problems too, but I don't think they even touch base with as many problems as you have had with your son. My heart goes out to you. It's difficult caring for a "sick" child. Thank you both for thinking of Quinn during this next pedi appointment. It was today and I am very sad. For the past few days, Quinn has been refusing her gerber foods and refluxing pretty badly. Resulting in a one pound weight loss. It was so hard to keep this weight on her and now this. Quinn is in the 9th percentile now. It's a let down. I went in there with high hopes of at least a few ounces. I'm okay with a few ounces, but a weight loss... it's heartbreaking. We are going to have another Upper GI and barium swallow and a speech therapist will be at this visit too to evaluate her. It might just be a behavioral problem. The Nissen Surgery is becoming a much bigger possibility... and that I'm scared of. Our pedi told me that if all of her problems are due to reflux, then this is the worst case she has ever seen. I don't know what to think about that. corrigan300, thank you for giving me a little bit of a better feeling about the surgery. If you don't mind my asking, when and why did you decide to get the surgery? How much did he weigh? What were his eating habits during his first year? How was his recovery? I'm sorry for all the questions. I want to know as much as I can about it before I have her go through with it. Thanks -Sarah
Sep 19, 2006
corrington300
Mom of 5 yr. old with nissen and G-tube of 4 yrs.
Nissen response
Sarah, I am so sorry you have to go through all of this stress, I remember those kind of appointments, and how much they would drag me down. It sounds like Quinn is bigger than Clinton was, he had the surgery done just after his first birthday, and the reason we waited so long then was because he needed to be considered stable for it. Clinton has always been fed by feeding tube, he had an ng tube(which is a tube that enters into the nose and travels down to the stomach) and like I wrote before, he was pulling it numerous times a day and I was the one who had to put it back in. After his feedings with the NG he would ALWAYS throw up. It wasn't a question of if, it was a question of when and how much. We waited as long as we could, just to give him the physical stability he needed to tolerate the surgery. Clinton had a g-tube put in ( a tube that enters straight into the stomach), a nissen and two inguinal hernias repaired. He initially recovered very well, he was laughing, playing and jumping around the next day, but we had some devastating issues with his hernias re-herniating. He went from playing to critical condition in about 24 hours. He underwent a second, very risky, surgery to repair his hernia. That was such a blow to us, he ended up staying at Primary Children's for another 4 weeks. But- on the bright side, he had absolutely no problems with the g tube or nissen. Before the surgery he was just below the 5th percentile, but he was never typical with his weight anyway, we just had to judge on whether or not we felt like he was nourished. And from the constant loss of weight, I knew he wasn't. Clinton had many delays, he's much better now, but I can honestly tell you that this was a lifesaver for him. I KNOW how scary it is to even consider, but I never realized how bad he was until he quit throwing up!! It took me weeks to get used to it!! I'd carry a towel with me and never need it. Your daughter may still gag, but that will cease. Please call me, I would love to talk with you- it's hard to type out because I write pages at a time. My email is Corrington300@msn.com, Email me and we can swap numbers if you'd like, I wondered where the surgery would take place, (if you know) and who would be doing it- I know some amazing doctors if you'd be at Primary's. Let me know- my prayers are with you and your family.
Sep 25, 2006
lee tc
Nissan Surgery
My son underwent surgery a year ago - he was 7 months old with severe GERD and also spent the first few months of his life in the NICU after nearly dying from a common virus. I too got tired at home of contantly replacing the NG tube however the throwing up and weight gain was difficult - also the every three hour bolusing. Max was 3rd percentile when we went for surgery and now he is 25th however we had a VERY difficult post surgery recovery. Max woke from surgery and the first day of feeding, starting vomitting - I was so depressed! I thought that he would not be able to vomit any more and here he was doing it. The surgeon stated that this can occur if the wrap is not too tight - which they don't want too tight or else they can't swallow. Max then was intolerant to anything we were giving him via G-tube and the gas / venting issue was a nightmare. It was like having a baby with severe colic - he would wake up screaming from gas pain and if we didn't get in to vent him quick enough, he would vomit everywhere. Max developed what they call gas/bloat syndrome and seeing that they can't burp after surgery, it always resulted in pain /screaming when he got gas. He has only just started being able to burp however most of the time it ends up in him vomiting. Max also now has a volume intolerance and can only tolerate 4-5 oz before vomitting. I don't mean to scare you off your decision - I just want you to go in knowing that it doesn't always solve all the problems. I still think Max needed to have the surgery as he couldn't have an N/G tube for ever - I just wish I knew what I was up against going into surgery. As for the eating aversion, we will be going to Kennedy Krieger in Baltimore for their treatment program and hope it will help us progress Max further along. I hope that whatever you decide works out better for you than it did for my son. I do know of others that went for surgery and everything went well and they now have their g-tubes out within months however I think they are the exception. Please let us know how things go -I'm sorry to be the voice of gloom - I just had such high hopes for surgery fixing it all and that Max would now be eating like a regular toddler - instead we still have a daily feeding battle.
Sep 25, 2006
lee tc
feeding behaviorist in CA
Sorry to fill up so much space with my issues - I just wanted to ask the person who took their child to the behavioral therapist in CA (Los Altos if it's the same one we went to) what your experience was like with him. You can either post your response or send it to my e-mail at leetc@sbcglobal.net I was just wondering if you had the same experience as we did. thanx
Sep 25, 2006
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
Response to Lee tc
I am so sorry to hear all that you have been through with Max...absolutely heart-wrenching. I greatly appreciate you sharing your experience. I have heard some success stories, but also other stories similar to yours. It certainly does sound like you had no other option, though, and I completely understand going ahead with it. I have a 2 month old now with severe reflux (I think even worse that my daughter's) and am hoping not to have to face the same decision. Fiona is doing O.K., but I'm tentative in saying so. She is staying around the 7-8% in weight with A LOT of attention. The stress is taking a toll on our family. We are using a behavioral protocol for her 3 feedings (just pureed solids). She can't really eat textures or self-feed (maybe a fruit loop or blackberry here and there). She is on 30 kcal formula. We are incredibly thankful, though, that we are where we are. I hope things get easier for Max soon!
Sep 26, 2006
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
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Jennifer.... You poor girl! If your son's reflux is even worse than your daughter's... I'm so sorry. You've gone through so much with Fiona. I hope his reflux can be kept under control! lee tc, It sounds like you have had a quite an adventure yourself. After hearing your stories... I do feel very lucky with Quinn. She is able to eat her bottle without any major problems... other than afterwards she vomits... I'm so sorry to hear about Max's surgery. I'm really struggling with what I am going to do about Quinn. In my opinion... she's borderline intervention. But when she has a reflux episode... my heart just sinks. I can't do anything for her and she screams and screams in pain. She refuses to eat... and she gives me those "mommy make it stop eyes". It's heartbreaking. And then I feel like I have a good reason to have the surgery done... but then when she is playing... happy... and eating... feeling good... I think why take the chance of ruining that happy child? It's so hard. At this point... I think her reflux is mangaeable... well... some days it is, other days it's not. Maybe if I add up all the good days and bad days... if she has more good days then bad... then maybe she won't need the surgery??? I don't know anymore.... Corrington300, I'm off to email you now. -Sarah
Jul 28, 2007
jerjonjoe
Oral aversion and gtubes
I am new to this but I am hearing a lot of the same stories. My little one is 12 months just learned to sit a couple weeks ago and will not eat anything by mouth. Ther therapist keep telling me that it might get better and just keep trying. We have been fighting this for 6 months and nothing has helped. She is in the lower -3% for height and weight and only gains 2 -4 ounces in a couple of months. I have to admitt this month it was 1 lbs but doctor said he is not sure that is right. G tube is not as good as everyone told me, and I am really concerned about doing the nissen, this seems to be the next step. her g tube is at 35 ml 26 cal per ounce, we have tried going higher but she vomit god awful. I think we need to back off. With no bottles, not a drop of food going into her mouth her teeth have basically underdeveloped and have no enamal on them. Dentist said we really have to watch for decay and the adult teeth to maybe not be there. For the 1st 3 months of her life she was basically starving to death, we forced fed every hour but not prevail. I am so tired of seeing Children's Hospital I can hardly stand it. Everyone telling you I am baffled and you need to see ...... and then the next one saying the same thing. Now we are off to genetics. This little one had a rough start, she is adopted and was prenatally exposed to meth and not a drop of prenatal care. Mom abandoned her but we were the lucky ones to get her as a foster baby. She was 4 days old with long black hair and the biggest smile you have ever seen. She vomits and smiles and vomits more and smiles. I know now that we have caused some oral aversions and will deal with this for the rest of her life. For all these little ones there has to be an answer, any ideas please help.
Jul 29, 2007
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
support for jerjonjoe
Oh, your poor little refluxer. I am sso sorry to hear all the pain you have been through. It sounds like your child is 1 years old and has a G-tube and how the docs are suggesting a Nissen? I can identify with your description of your child as the sweetest little smiler despite it all. My now 2 year old daughter and 1 year old son (both serious refluxers) have the most open, intense smiles despite everything they have been and still are going through. I wish I had 'the answer' for you. I think that as a parent of a refluxer, you are amazing and will persist to figure out whatever it takes to get your little one through...hang in there. I don't think that there is one answer in particular except...trust your gut. You probably know more as a parent of a refluxer than most of the medical profession. That being said, we have been able to avoid a G-tube and a Nissen for our daughter thus far...it has been an incredibly challenging road, but finally there are some signs she will eat like other kids do eventually. Starting her on the prevacid solutab was very helpful...same for my son (we treated him earlier in life as we knew what was happening the second time around), but we needed to increase his dose quite a bit higher than the docs recommended and placed him on zantac every night. We also went to a behavioral therapist to help my daughter eat without a tube...this was incredibly difficult and may have worsened the oral aversion, but helped us in the long run. Will continue on the next post.
Jul 29, 2007
fiona's mom
Mother of 13 month old with oral aversion due to reflux. Now mother of likely 4 week old silent refluxer. He was born 6 weeks early.
continued support
Anyways, hard to get now, but I do think that in the long run, both of my children are extra amazing little people due to all the attention that they have received as a result of the reflux. We still do not know what the future holds and I would NEVER wish this severe reflux on ANYONE, but these kids ARE special! Hang in there. My heart is with you. Feel free to e-mail if I can help in any way...my husband and I would be happy to find a time to talk with you (jenfirestone@earthlink.net).
Mar 20, 2011
jillgc
To Ella's Mom
The posting I'm responding to is from five years ago, so I hope you are still part of this forum and get this message. My 2yo son has the exact same symptoms as your daughter. He was vomiting all the time, even on a drip feed with the g tube. He has had a gj since August and he still vomits saliva and bile. We are on a waiting list to see a motility specialist in another state, but that is our only lead. Nothing has been revealed from all the testing that's been done. Were you ever able to resolve Ella's problem. She is the only other child I've heard of with symptoms similar to Simon's.
Check with your
doctor first!