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Topic: Help, reflux frustration!
Hi everyone
I will try to keep this as concise as possible. DD is 4 months old. A little over 2 months ago she started having issues with her feeds, kicking her feet, arching her back, rasping, etc. Our peditrician thought she had a milk allergy, so I went off of dairy. That seemed to help some things, but not the rasping etc. They put her on a Prevacid Compound, at a very low dose, but we had issues getting it prepared properly. One went bad and made her pretty sick. I went to a GI specialist and they put her on a Prevacid SolUTab. Half in the morning, half in the evening. The Prevacid seemed to help with her reflux after about a week, no more rasping, but caused a lot of other issues including trouble sleeping at night, severe abdominal cramps, unbelievable screaming, etc. She was miserable, moaning, never wanted to talk etc. She was so exhausted all she wanted to do was sleep. The doc did not think it was the SolUTab causing the issue, but I thought it was. They wanted me to put her on formula but I did not want to give up breastfeeding.
So we switched to Nexium to try that. 10mg 2X day. The first night she slep better, but the next day was rough. She basically went back to square one with horrible reflux and no naps that day, very uncomfortable. She was not rasping, but spitting up, gulping, cringing etc. Then things started to gradual improve. Her night time sleep stayed a little better, but her composure was totally improved. She was peaceful, went down for naps without screaming for half an hour, but still had trouble staying asleep and would gulp away. After a week on Nexium, she started rasping again. It will be 2 weeks on Tuesday, and the last two days have been the worst rasping I have heard in a while. Last night she didn’t sleep at all and today she has been so congested and raspy. I’m wondering what’s going on… anyone have any ideas? Is the Nexium just not going to work for her? Are all the other improvements we are seeing just a coincidence, if it is not helping her reflux?
Other information that might be helpful, she seems constipated on the reflux medications, so she gets miralax every day. Her gums are a little swollen and we have suspected her teething for a few weeks. She hasn’t been drooling that much lately though. I am still off of dairy and now soy as well (3 weeks off soy, 6 weeks off dairy). She will only eat while she is sleepy. This had improved as the reflux improved on Prevacid, but is getting worse again. She is down to short feeds again today. I’m worrying and over-analyzing everything. Just need some feedback from someone please. I am so tired and wore out and worried about her. I took her to the pedi a few days ago because I thought surely all this rasping wasn’t from reflux, but now I am sure that it is. The pedi said that regardless, she thought she might have an upper respitory infection.
I’ll try to get all the details in here without writing a novel.
My first two children had reflux issues that were easily solved. Baby #1 we switched to formula that came as concentrated liquid (dilute 1:1 with water) and for some reason it helped. Baby #2 we switched to formula with added rice starch and that was thick enough for her to keep it down.
Baby #3 (DOB: Feb 1st, 2013) is entirely different. He’s a silent refluxer and he’s absolutely miserable. He screams and writhes in pain for 2-3 hours after each feeding. I say “silent” reflux because he doesn’t spit up much at all, but I can actually hear him refluxing. Sometimes he chokes on it. Sometimes he is gasping for air and making a noise that sounds like the whoop of whooping cough.
Formula we’ve tried: Similac, generic brand soy (Parents Choice, Walmart), Similac Sensitive, Gentlease, Enfamil AR (added rice starch), and for the past 4 weeks he’s been on Nutramigen.
I quit all breastfeeding 4 weeks ago when we started the Nutramigen, because the pediatrician said he may be allergic to dairy that he was getting through the breast milk. Yes I know I could have done dairy elimination in my diet, but I did not want to wait for him to get better while it cleared out of my system. I was hoping the Nutramigen would eliminate his pain, and it didn’t. He’s actually worse, because now he’s not gained any weight in the last 4 weeks. He is only 8 weeks old.
Meds: Started on Zantac at 6 days old. 15 mg/mL, 0.75 ML twice a day. He was exclusively breastfed at this point, and we already knew he was refluxing. He was nursing every 2 hours, getting plenty of milk (had only lost 1oz body weight at hospital discharge when he was 28 hours old), and very screamy for a newborn. At about 7 days old he started getting a little bit of formula. I was exhausted by a screaming, unhappy baby that wanted to nurse every 2 hours, so my husband would take him after a sleepless night and feed him a couple ounces of formula while I slept. The Zantac didn’t help, and the pediatrician suggested we switch to soy formula when he was getting formula. He started spitting that up. Prior to the soy formula, I don’t think he’d spit up much of anything. By 4 weeks we’d tried soy, sensitive, gentlease, rice starch, and he was still an unhappy baby. At that point we had an office visit with a different pediatrician who put him on Omeprazole 2 mg/mL, taking 3mL once a day, and suggested using Nutramigen when using formula. The 3mL dose once a day wasn’t helping, and was increased to 3mL twice a day on March 20th (6.5 weeks old).
March 28th I took him back to the pediatrician because he’s just miserable. He eats, then 20 minutes later he starts screaming. He’ll scream for 2-3 hours, until he is exhausted and falls asleep. He stiffens his body straight like a board and is completely inconsolable. He screams until he can’t breathe. Pediatrician said to add rice cereal to his bottle, and might as well go back to regular formula since the Nutramigen wasn’t making any difference. I asked about Prevacid, and she told me that it isn’t on the Kaiser (insurance) formulary and has to be approved. She said she’d consult with a pediatric GI doc and get back to me today. She also noted that he had only gained 4oz since the previous visit 3.5 weeks prior.
April 1st: Today he is 2 months old and we had his “well baby” appointment. He’s dropped 3 ounces since last Thursday. Actually he’s lost more than that, because today he had on a dry diaper during his weighing. Maybe that is another ounce? He’s still been on the Nutramigen (I was using the last of it) taking 4oz per feeding and adding 3tsp of rice cereal to that. So between March 5th and April 1st he has gained exactly one ounce. I asked what do we do now, and she said the GI doc said no reason to switch to Prevacid. I asked about going back to the Zantac, in addition to the Prilosec, and she said that was fine to try. Of course, the pharmacy was out of the Zantac today, so I have to pick it up tomorrow. She also wants me to feed him more frequently or more ounces per feeding to gain weight.
I can’t feed him more often. He currently eats 4oz every 4 hours, and screams for 2-3 hours after most feedings. He falls asleep around the 3 hours after feeding mark, totally exhausted from screaming and writhing in pain. I’ve tried giving him 6oz (thinking maybe he was still hungry and that’s why he is screaming) and he will vomit it all up during burping. I’ve tried giving him 2oz extra in the middle of the 2-3 hours of screaming, and that prolongs the screaming, and often causes him to vomit it all. Tonight I gave him 5 ounces and he kept it down. I do think adding the rice cereal to the bottles has helped a tiny bit in terms of getting him to scream less.
But now that we know he’s not gaining weight I’m suspecting it is not just the reflux that is causing the screaming. The pediatrician said she wants to check his weight again in a week, and if he hasn’t gained a few ounces then we may need to switch to Elecare, and she’ll want to do “lab work”. She didn’t specify what she meant. I don’t know what she could check via blood test. I’ve read that allergy testing this young isn’t reliable. What else is there to check via lab work?
Any insight? Anyone have/had a baby that screams in pain, doesn’t spit up much, and doesn’t gain weight?