I have written several shareposts on this site and this one is more of a review or summary type of post. My expertise is that I am a mother of a reflux baby and I understand science (Ph.D. in Biological Sciences). I am not a medical doctor or a therapist but when these experts explain the logic behind their treatment, I can understand it pretty well.
Eventually, we were very lucky to find a good pediatrician and a good therapist (SLP) for my son. As for an update in Avin's condition, he is still sleepfeeding but it's happening more smoothly and every once in a while he will accept a sippy cup for smaller quantities. He is eating pureed solids but again in smaller quantities. He is still on the growth chart following a curve of lower percentile scores but he is growing into an energetic and happy child. He is happy and no longer needs his PPI medicines (Prevacid or Prilosec). He is a fussy eater but he has graduated to being a difficult and fussy child rather than a sick child. He has learned to crawl and he is learning to stand with moderate support. He babbles and says things such as mum, dad, nun-nun (for food), bha (for bye-bye) and so on.
Along with caring for Avin, I also spoke with several dozen reflux mothers, joined many reflux and feeding forums, and met other parents who are in the same boat as us. We got many useful tips from most of them. On the other hand, I tried to stay away from folks who gave unsolicited, irrelevant or aggressive advice about medications or treatments. My logic is that all children are different and only a mother of reflux child, who spends 24 hours with the child can estimate how severe or serious her child's reflux or feeding disorders are. Therefore, I have to confess that this article is from ‘my point of view' and may have certain biases. It's also based on observations of parents of babies who have silent reflux with very little or no vomiting. You may find some things in here that are useful for your little one, and other things that are not applicable to your child's condition. You are the best judge of your baby's condition.
Severe reflux usually causes some sort of feeding discomfort followed by a feeding disorder. Back arching is the most common early reflux symptom followed by turning away from the breast or bottle, being able to feed only while asleep, grazing (feeding small but very frequent meals), gagging, choking and retching while feeding, and finally inability to swallow textured foods once solids are introduced. Proper medication and/or therapy are needed for babies with severe reflux. There are several good scientific articles, books, and many share posts on this website about feeding difficulties arising from reflux.
The key to treating reflux early is selection of appropriate medicine along with appropriate dosing. It took nearly 3 months for us to figure the right medicines/dosages for my son. A good pediatrician along with a good GI finally helped us controls my son's painful reflux symptoms. Conservative dosing led to severe aversions and kept us struggling for a while. A good doctor is essential for successful treatment of all reflux symptoms. Once that was done, we introduced solids and started looking for a good therapist who could help him accept the solids willingly. It has been my experience that therapy is not very useful in infants who are less than 4 months old. A session or two with the therapist and you might realize that there is not much that they can do if your infant does not accept the bottle. Still it might be worth it to do a session or two just in case some therapist somewhere holds the key to helping a child who sleep feeds or refuses bottle.


Sonja,
Once again you have done a wonderful job of sharing your story and helping other parents on their reflux journey.
While my reflux baby was not a sleep feeder, she has similar feeding problems due to silent reflux. Just as you have found, there was no one treatment that helped. Certainly excellent medical care, including medication was key. In addition, supporting her efforts to approach food and eating during a long period of time really helped her. Checking my emotions at the kitchen door was difficult and key. Maybe this was the hardest part too. I felt so defeated by her inability to eat and MY inability to "fix" the feeding.
Thank you again,
Jan Gambino
The Reflux Mom
www.refluxmom.com
Hi Jan,
I can totally empathise "Maybe this was the hardest part too. I felt so defeated by her inability to eat and MY inability to "fix" the feeding" coz that is exactly how i am feeling with my 5 month month old who is having reflux issue ever since she was 3 weeks old. I have an appointment with a Ped GI this month. We will see how that goes.
Meanwhile i am also in constant touch with Sonja who has been such a wonderful support whom i cannot thank enough.
Sometimes i do wonder if she will ever get better although i know that she sure will outgrow her issues at some point.
Thanks to both you and Sonja
Lava
Dear Lava and dear Jan,
Thank you so much for your comments.
Lava, it may be hard for you to accept this right now but believe me--you daughter will be 100% fine.
When Amy D told this same thing to me, I felt no confidence in her statement what-so-ever (and at time Avin was exacly 5 months old). I always wondered whether there would be any light at the end of this dark tunnel. It was horrible and heart breaking and I had to change 4 pediatricians until one of them finally decided to take us more seriously, same thing about the GI's. Sometimes I wanted to fly to Houston and see Dr. Vartabedian (Author of Colic Solved) for Avin. Fortunately, our current pediatrician is a fighter (like me..lol)-- she got on the case of our GI and pulled some strings and got a second GI involved. But by that time the increased dosage had helped Avin tremendouly and we had already begun tapering off.
Initially our pediatrician did not believe that it was reflux (because silent reflux is very hard to diagnose/understand) but she is open minded and she read "Colic Solved" for my sake. I had also taken several scientific publications along, marked the important points and made notes for her to look at. In the end she accepted and once that happened things improved rapidly. So for me nothing was more frustrating than finding the right doctor and convincing her. Fortunately for you, your DD has a good pediatrician, very open-minded. That's as if 50% of your struggle is over. Things will get better.
A 5 mo old reflux child accepts very little solids but do not give up (don't ever force feed though). Slowly but surely the intake increases. I will repeat a statement from Amy's e-mail to me... "One day your little one will surprise you by finishing an entire bowl full of food"...we aren't there yet but I am confident that Avin will do it sooner or later and I am confident that your dd will do it too! Good-luck.
Hello Lava, Is your daughter sleep feeding too? It sounds like she isn't too interested in solids. What have you tried so far?
Jan
Jan, I believe that Lava's dd is on a sleep-feeder's reflux roller coaster. They accept solids for few days straight then for some reason it goes down-hill, then one day is good, followed by a bad day. However, if you look at weekly intake it steadily keeps going up...eventually. Lava, correct me if I am wrong.
Hi Lava,
This is Ritu. I was wondering if I could get in touch with you to seek advice.
Hi Lava,
I saw your posts at healthcentral. Is is possible to get in touch with you to seek advice/share experience as I am struggling with a sleep feeder on hand!
thanks,
Ritu
Hello Ritu,
Have you tried using the HealthCentral email/messaging to reach Lava?
On another note, I know that I missed your call recently. Please try calling me again-ok?
Jan