Hi My almost six month old daughter has suspected reflux and is taking Omeprazole and a partially hydrolysed formula. I however am worried because the medication seems to have little effect but still nobody is interested in confirming that she actually does have GORD. The only symptoms that she shows is feed refusal. In fact at the moment this is so bad that she will only drink an ounce at a time and during day times is taking on average 8 ounces a day. We do manage to get her to take maybe 5 ounces whilst sleeping at night, and a few mouthfulls of solids- although not enough to make up for the missing milk.She sleeps fine at night now- although in the early weeks she would wake as soon as laid flat. The feed refusal seems to be generally worse in the mornings-by afternoon she will sometimes take 2 ounces and bed time perhaps 4 if we are lucky.Do you think it is possible it could be something other than reflux as everywhere I read about reflux babies that dont sleep.She did used to be a very unsettled baby- always screaming and going stiff- but this is not the case any more. She also used to back arch and twist her neck to one side (our GP says its typical of Sandifers syndrome) but again is not doing this now on the medication- she is just flat out refusing.Her weight gain until now has been o.k, but the last week has seen the refusal get so much worse so I am sure this cannot continue.I feel some of the advice I am given by health visitors etc is inappropriate. Yesterday at 11am I was told not to feed her until she gave me hunger cues and to wait as long as 6pm. I explained she does not show hunger cues and was told this is only because I feed her all the time. I only feed her so regularly because I am terrified of her dehydrating as it makes no difference if I wait 4 hours- she still takes 1-2 ounces.I am desperate- so unhappy and dont know what to do.Any advice from anyone more experienced than me would be gratefully received. I am so sick of people asking me if I am a first time mum and then seeing the knowing looks. This is not normal- I am a first time mum but surely my intuition counts for something?
Hello Refluxmummy,
Whether you are a first time mum or this is your third set of twins, having a baby with reflux is probably the biggest parenting challenge imaginable.When your baby won't eat, sleep or grow like another baby, it can be very confusing and challenging to figure out how to help her.
Babies only have limited ways to communicate. Crying is one way. Turning away is another. She is trying to tell us that feeding isn't working too well for her right now. Feeding is uncomfortable, scary, hurts, causes discomfort or pain or something else. It seems that the medication and diet have helped somewhat. Either she needs more medical treatment to reduce the pain more or she has some fear of eating from past pain or both. While many babies refuse to eat due to reflux, you and the doctor need to look at all causes for feeding refusal.
If you search sleep feeding here on HealthCentral, you will notice that there are others who are having the same experiences with sleep feeding. It seems to be a "safe" way for a baby to eat until the root cause of the discomfort/fear of eating can be addressed and treated. It is important not to force her to eat when she is resisting. This will only increase her fear and discomfort. Imagine if you ate a big meal at a restaurant and the waiter said you must eat more and started feeding you! You would most certainly turn away and try to keep your mouth closed too!
It is my experience that some sleep feeders learn to eat while awake when the medications are adjusted to increase pain management. Some also benefit from a hypoallergenic diet. Many sleep feeders benefit from feeding therapy. Over time, a sleep feeder may learn to eat from a spoon and drink from a cup, reducing the need for the bottle.
There is much support here on HealthCentral. Let me know if you have other questions or concerns or if you just want to talk it out.
I hope you will visit us often and give us an update.
Best wishes,
Jan
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