I don't know where to begin. So much has happened in the past four months. I will try to recap as best as possible. My baby was born at 39 wks 1 day. He was very sleepy for the first 3+ weeks. I was initially BFing but after a wt check where he had lost I began going to an LC and pumping and bottle feeding. I could only keep that up for about 4 wks before turning to formula (I also have a 2 yr old to manage). He started refusing and crying when I'd try to BF as well. Eventually he began crying at the bottle and refusing to eat for long periods of time. We started Prevacid, increased it to twice daily, got a Ped GI consult, added Zantac at bedtime, started Nutramigen for milk protein allergy, I took him to ENT to rule out tongue tie, took him to a pediatric feeding clinic for eval with ST, had a swallow study, and an EGD with flexible sigmoidoscopy (last week). Tests so far have revealed nothing but everyone who has witnessed the feeds agree it looks like reflux-so what else can we do? I've tried rice cereal in the bottle-he wont drink it, he wont eat it from a spoon. His crib is elevated. I keep him elevated after feeds. He has chronic congestion at the back of his throat that the ped thinks is reflux coming back up and sitting there causing the "rattling" sound. We have biopsies from the EGD pending that will tell us if he truely has milk allergy or not. He is maintaining his weight some how but has done a lot of feeding throughout the night (which is another issue in and of itself-LOL) I find myself so frustrated and sleep deprived and don't know what to do sometimes. I feel like I have explored every avenue and have gotten no answers or anything to help us. He has good feedings and even good days but always goes back to refusing. Yesterday he went a solid 9 hours without a drop. Here is a short video of how a typical feeding goes. Night feeding go very smoothly with no fussing. Any suggestions are welcomed.
What does your GI say? What form of Prevacid are you on? Some kiddos are so sensitive to milk proteins that they cannot take Prevacid solutabs because they have dairy lactose in them. Also, even Nutrimagen has some trace dairy proteins in it. He may need to be on an even more broken down formula, such as Neocate, or something similar. Also, some kids do not have a true dairy allergy, but they are still MSPI (milk/soy protein intolerant). It's very common. Have you tried the RTF formulas? Sometimes babies can tolerate that easier than powders.
So, some suggestions I have... First, I would consider trying a new form of Prevacid, or even a different PPI, if he's on the solutabs. What dosage is he on, btw? Also, I would talk to my GI about a more broken down formula. You should also be trialing new formulas for 3-4 weeks, except in the case of reaction. It can take that long for the offending proteins to exit the body. If it were me, I would NOT try solids at this time. They are just for practice, and they are not easy for a baby to break down and digest, even the cereals. IMO, it can really make GI problems worse. At this point, all of his nutrition really needs to come from either BM or formula, and since he's having feeding issues anyway, I would not potentially make it worse by trying to add another level of complexity to the problem. (and please know that I have been exactly where you are, almost word for word, except we were nursing at the time)
(((hugs))) momma! I really feel your pain! Your post brings back hard memories of what we went through with my daughter 3 years ago.
CL for Reflux
"That's the promise of America - the idea that we are responsible for ourselves, but that we also rise or fall as one nation; the fundamental belief that I am my brother's keeper; I am my sister's keeper. That's the promise we need to keep. That's the change we need right now."
Thank you for your reply!!! Someone that has been through this that can identify with the frustration I have been feeling helps sooooo much. To answer your questions-he is on the Solutab-15 mg. GI called today and said that all biopsies were normal and no evidence of milk allergy. She is really not that worried about him because he IS growing. Clinically he looks fine but day-to-day care is a nightmare as far as feeds go. She just assumes it's reflux that he will outgrow. She said to follow up in 3-4 months! Granted she is getting ready to take a maternity leave and they mentioned I could see another GI if needed. She said if he did well I could take away the Zantac first and then try him off the Prevacid. WTH! Doing well. At 5 pm he'd only had 8 oz all day! Is that considered doing well? I am frustrated bc she doesn't take me too seriously and I get the feeling that she thinks I am over reacting. The morning of the scope after asking about formula, meds, oz/day she said "well it sounds like he is doing a little better, are you sure you want to do the scope?" Uh-no we drove an hour, spent the night, and got up at 6 am just to walk in here and cancel. I am a nurse so I am an educated and this is not my first child but I feel like I am being blown off in some ways. I want answers and a solution. I'm tired of hearing "he will outgrow it". Will he??? I'm not sure of it unless we determine what the problem is. Could it be an oral aversion? I have no idea. I have tried every bottle, nipple, feeding position-you name it-I've tried it. I haven't tried the RTF formulas though. Maybe I will try that. I know that they are more expensive but worth a try. I like to never got him to drink the Nutramigen. It took several days of him not eating much before he gave in and started eating it some. I do not like the idea of switching again. We have tried Enfamil Premium, Similac Sensitive, Prosobee, Gentlease--GI gave us some samples of EleCare. I have not tried it and honestly financially I don't know...We are already forking over big bucks for him-at least $150/mth for Nutramigen, $57/mth for Prevacid, $10/mth Zantac, $25/mth for Probiotic drops. All of this expense does not even include diapers and wipes bc we haven't had to buy any yet--thank goodness but will have to soon. I don't even know how much the EleCare is but if it's not a milk allergy would he really even need it. I also have him enrolled in First Steps for speech therapy. Hopefully the speech therapist will get to start coming soon. I don't know what she will be able to do for us because we have already determined that it isn't a sucking problem but hopefully will have some suggestions so that I don't feel like I am alone in trying to "figure" this out alone.
I am very disappointed that I have no more answers than before the scope (other than that there is no major problem and no milk allergy) and I don't know where to go from here. Did I mention I'd even taken him to a chiropractor? Desperate times but I've had him evaled by everyone I can think of and am still no better off. Another odd thing is that he eats best for me. When he stays with grandmas he barely eats. He also eats best in the evening time and at night. I am willing to try just about anything. Thank you for your help.
Was your daughters problem reflux and did she EVENTUALLY outgrow it? My first son was a happy spitter and we treated with Prevacid. He spit up until right at a year but eventually outgrew it.
I just went through all of this with my daughter. I have tried everything, the thick formula and probiotics are what worked best until she started getting too full with the thick formula. So then she was only drinking about 12-15oz. per day at 6 months!! Not enough.
So I was on a reflux board on Facebook and this woman mentioned something about the DHA/ARA blend in commercial formula being synthetic. I researched it some more and it's made with bacterial oils that some babies tummies can't handle. Mine happened to be one of them I guess. I wasn't sure but I thought hey, I will try the organic formula that has natural DHA/ARA www.naturesone.com
It's called Baby's Only, I got it at Whole Foods. I tried last night for the first time and Ashlyn slept for 5 hours straight, longest sleep stretch yet! She is the happiest baby today, it was like I traded her for a different child.
Now I know every baby is different but since you are on formula already, it doesn't hurt to try right? That's how I felt at least and man am I happy I did. Also, keep in mind the formula says "Toddler Formula" on it but that's because they are trying to mention that breastmilk is the best source of nutrition for an infant under 12 months. But like you, it didn't work out for me. The minute I switched to formula, the problems started.
Anyway, I hope this is helpful :) Keep me posted if you do decide to try, I would like to see if it helps you.
