Hi there. So sorry to hear about your son. Believe me, I understand how you feel. I was exactly there- except that my dd was chronically miserable… wouldn’t eat, or sleep. Didn’t want to be held, but didn’t want to be put down either. Fussed in our arms. NEVER cried to be fed and when I would try to feed her after almost half a day of no intake, she still would refuse. Initial symptoms started subtle- thought it was overactive let down. But by 6 weeks things were quite difficult, and by 8 weeks it was a complete feeding strike. I was saying I suspected a feeding aversion at about 5-6 weeks, the ped was pushing the BF problems. When she finally went flat out refusing I brought her to the ped again and told him to try to feed her. I showed him how she refused to nurse, then gave him a bottle of EBM and told him to try to feed her. Needless to say he could not- immediately said reflux with feeding aversion. Your son definitely has a feeding aversion. His prevacid dose may not be enough for him. Hailey was on every kind of dose, didn’t get relief until 30mg daily and higher. Even then, her pain was under control but the feeding problems were too ingrained. BUT we were at 8 months at that point. You are at 9 weeks, so it’s still possible to turn things around. Ask the ped GI to try a higher dose of prevacid. Look at http://www.marci-kids.com . Read about dosing information- it’s aggressive but works, and most kids with feeding problems need higher doses. If you’re giving solutabs- make sure to give on an empty stomach and follow up with a meal 30 minutes-60 minutes later. That activates the med. The problem for us was that due to the feeding aversion I couldn’t get her to feed on demand, so the med wouldn’t work, and also the dose was too low. She needed 3x a day dosing, and also we used CaraCream, now called Buffer Babies from marci kids so that we didn’t need to time around meals. It worked much better due to the feeding problems. But getting her to take the meds was a human torture- she screamed and cried and spit it up after most of the time, so I understand your frustration. It’s very hard. We also did sleep feeding, not by choice. It was a bandaid kind of solution to get us through, but she still didn’t eat easily, and eventually would only feed by sleep feeding, so I don’t really recommend it as a great choice. We were desperate and just kind of fell into the pattern.
About the stress- it’s terrible. It almost tore us apart. Get help if you can, from family members or others. Take a break. Being a new mom can be hard to begin with, so people often attribute the situation to a new mom not being able to handle things. But that’s not it. People don’t and can’t understand unless they’re in the situation. They’ll tell you not to worry, that babies will eat when they’re hungry, and think that you don’t know that. But know that it’s not you. My first dd was not a refluxer, and so I knew what a baby should eat like by the time Hailey- my refluxer- came along. My first was 20 months at the time. Babies who are not in pain cry to eat, and then seek comfort from the fact that they are fed. They open their mouths eagerly to get their food, and eat until they are full, and then they are content. Babies with reflux pain or a feeding aversion may never cry to be fed. They attribute feeding with pain. When we offer them food, they may initially go for it and then pull away and cry or arch or refuse more because the pain starts. They may even go back for more, but continue this. Or they may be so afraid of the pain that they may cry when you try to feed them, and turn away or refuse to open their mouths. THIS IS A FEEDING AVERSION. TELL YOUR DOCTOR. IT IS NOT NORMAL. We were sent to pediatric psychiatrist who tried to tell me that my daughter had a feeding aversion due to my stress, or due to me force feeding her. You will hear lots of wrong things. I did not believe this and don’t believe the things that you hear from others. You will get through this and it will pass, but definitely best to try to get things under control now.
Here’s what I would do:
1) Get a referral to a ped GI if you don’t have one already. If you tell us where you live, someone can recommend someone who believes in higher PPI dosing.
2) See if you can get him on a higher dose of PPI.
3) Read marci-kids and see how you feel about what they suggest. The pharmacist who does the research for marci-kids will call doctors to advocate for higher PPI dosing. Let us know if you want to try this.
4) Ask for a feeding evaluation. This can be done by an OT or an SLP who will look at how your son feeds. They are attune to feeding problems. They will make sure that his suck/swallow/breathe are co-ordinated and that there are no other issues, they’ll make sure that he’s not aspirating etc.
5) Try to feed ds when he’s relaxed or with distraction- i.e. when carrying him, or in front of the TV, though he’s still young. Tell us more about what his feeding looks like when you try to feed him, and maybe I can help more. I’ve been through a lot of feeding therapy with dd.
6) Take breaks and try to get help for yourself.
Good luck. For what it’s worth, my dd had a terrible feeding aversion. It was very hard. I didn’t think I could do it, but we made it through. She is now a finicky eater, but what I’d call almost a normal eater- fussy, but eats a lot of what she likes and we don’t worry about her intake at all. Hang in there! HUGS.
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Everyone thinks that I am over reacting but they don’t see what I see on a daily basis. When will it get better? I hate the fact that I don’t know anything. The meds are not working and my baby is still suffering.
