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I should’ve asked for help before now. I’ve just been feeling so heart broken
Couldn’t put anything in to words.So we went to the GI a few weeks ago to “demand” the Zegrid(we were on 22.5 of solutabs and doing my absoulte best to dose them correctly, better then the doc even said I had to). Anyways, first thing doc said was maybe it was time for Alimentum. I said no way how was he sure that was it. I am very good about the diet. He said Eli should be responding to the tx better than he is. So, doc decided to do upper GI and ph monitor. Well the upper GI was normal except for 1 episode of mid espophogeal reflux. The ph monitor experience was horrible. We we suppose to have it placed at 10:30 am on a Mon. morning so Eli was NPO 3 hrs. prior. Then the nurse messed up the admitting procedure so he didn’t have it place till 11:40 didn’t ge to nurse until 12pm.
He was very upset. The morning is usually his biggest nursing time. We then had to stay at the hosptial overnight. This was so hard bc he not used to being away from home. Strangers kept coming in as if it’s not hard enough to bf a reflux baby. His urine output actually decreased dramatically. No wet diapers overnight. And I knew by 11pm he wasn’t refluxing that bad cause he wasn’t taking in the volume. The probe was removed about 9:30am and we went home.(the weekend before I bumped the dose to 30mg out of desperation. He seemed to start doing better, but about 5 days later back down hill.)We followed up with the doc. (2weeks ago) Said Eli refluxed 25 times (non-acidic) but the behavoirs did correlate with the reflux. So e-mycin but caused terrible stomach pain for 3 hrs. When I called doc. said formula again (Neocate). I said I don’t understand rationale since he keeps flip-flopping. So asked to switch doc. (we go to Cincinnati Childrens) It took a week to get another appt. but we are seeing Dr. Rudolph tommorrow. He worked us in even though he isn’t seeing pt. this week. I usually feel hopeful before appts (7 in the last 2 mos.) but I just don’t anymore.
I just don’t know what to do? I think Eli’s on the edge of a feeding aversion(been there with Evan). It takes ALL day to nurse him. He doesn’t sleep at night. I’ve eliminated milk/soy/beef/nuts/wheat/eggs at this point. I break down and cry many times a day b/c I feel like I have no timewith my other kids and I miss them soooo much.
My husband has had to start working at night so he can be home during the day. We can’t keep going like this. Eli’s had about 2 good days after each med change and thats it.Any advice or doctor recommendations, would be appreciated?
Jennifer
Jennifer, I feel so badly for you. I don’t have any advice or help, but just wanted to let you know that I will pray that this new doc is able to give you some guidance that is worth while for you and that Eli feels better soon.Jennifer,
My heart is breaking for you and your lo. I sure know how frustrating this is. Kate’s been through specialists and doc appointments almost every week for the last two months. It’s exhausting and I only have one
I TOTALLY understand your frustration with the diet. I did milk and soy free for three weeks and TED for almosta month. Have you tried TED? It didn’t do a think for Kate so we’re pretty sure there’s no allergy there. If you want to keep nursing, what helped me most when my docs were telling me to just switch, is just exhaust every possibility….which you probably already are doing Kate was on max dose of prevacid(30mg)for almost a month with no change and I had to pull teeth to get that. We’re now on Zegerid and I’m rambling but my point is just be peristant. If that doc isn’t listening to you and willing to try other meds and work with you to continue nursing, switch. I know it’s hard, we switched THREE times and like I said, I just have the one. You are so strong for just continueing to nurse this long, it is so incredibly hard to nurse a reflux baby and not feel partially responsible for their pain…well that was just me anyway. I will pray extra hard tonight that you get a good doc who’s willing to work with you and that Eli gets relief really soon. You’re being so proactive so I hope you will avoid the feeding aversion. I hope you are able to continue nursing too! I did and still do get panic attacks before I nurse Kate because it’s hard now but was so much worse for so long. Bla,bla,bla, I’m done. It’ll all work out I’m sure, hang in there
Gosh, Jennifer, I’m so sorry to hear about all of this. What a mess, and not having a doctor on your side has got to make even more stressful. Hang in there though. Breastfeeding a refluxer is really the best thing you can do. They can digest your milk so much more easily than anything else. I think Claire’s suggestion about TED is a good one. That way you could at least find out if anything else could be bothering him and gain the satisfaction of knowing that you have tried everything you can. How long have you been on your current diet?
My guess is, however, that he just needs higher meds. Now you just have to find a doctor to listen to you. Maybe print out the Marci-kids info and take it to your new doctor? Hopefully, he will be willing to listen.
I know how it feels to miss your other kid(s). I only have one other, but it’s been hard watching her grow up so much this year, and feeling like I have had very little to do with it.
Hang in there.
I’m originally from Ohio, and, ironically enough, my mom’s a radiology tech. at Cincinnati Children’s! I’ll ask her if she has heard anything good/bad about gi’s in the hospital.
Thanks so much for all the thoughts and prayers. I am very anxious about tomorrow.
I did start the TED last week. I don’t think I was very prepared. I ran out of food by the third day. I also got really dizzy and felt very sick. Don’t think I was getting enough calories. My milk supply went in the toilet, still working on rebuilding. It’s hard though cause I am getting to the point that I don’t feel like eating. But, I’ve been off milk since begin. of Feb. Soy-March. Beef and nuts April and May. No wheat or eggs in almost 2 weeks. I know he has an issue with milk (bloody stools, lots of spitting and tummy grumbles). Beef-mucousy stools. Soy and nuts not totally sure, they were just on the way to the others
I don’t think his uncontrolled reflux symptoms is all allergy induced. I think the poor guy was refluxin before we got out of the delivery room
I’ve bf all my kids so my milk starts coming in during delivery
I’m just so frustrated with this doc. as he is probably with us. His nurse told me yesterday that he wasn’t really sure this was allergy induced or aggervated either he just doesn’t have anything else to offer us.
I hope the doc. tomorrow can shed some new light on this. Maybe we just need a fresh set of eyes.I don’t want to give up nursing. I don’t know how too. It’s all I know
Good thing is Eli has been gaining well. I hope it continues. Evan was ftt by 8 mos. and almost got a feeding tube at 10mos. I just kept nursing started syringing some solids and he pulled through. Anyways sorry to ramble….Naomi-that would be great…I’d love to know who’s really good and who’s not. They place the ph monitors(impedance) in radioloy, so maybe she would know.
I’m so sorry to hear your struggles. I hope the new Dr is on your side. My only advice is to stick to your guns. If you want to continue breastfeeding do not compromise. Ask that the meds be tried first and if that doesn’t work you will look at options then (of course you still don’t have to but that might sound like a compromise to the Dr
). Another idea is, perhaps a combination of PPI and H2 for awhile. At one time Alana was on the marci kids dose of prevacid and the max dose of zantac for her weight.
Goodluck.
hang in there with the breastfeeding! it’s so hard bcse it may or may not be your diet. in our case it was not my diet. in others’ cases it is their diet
.Dr. Putnam at Cincinnati is supposed to be THE BEST!
Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
Hi all-
Laura-Dr. Putnam is supposed to be one of the best. He’s booked till November
The only way for someone to get an earlier appt. is if they’re dealing with EE or FPIES. He is very knowledgable about food allergy and intolerance. I hope we don’t need him. Thanks for your reply.Naomi-We’re familiar with Dr. Kaul. He’s the motility guru. Couldn’t get an appt till August. I don’t think we can go that long without a plan. Thanks so much for asking.
Our appt. with the new doc. was kinda comforting. We seem to be on the same page and he’s easy to communicate with. He says he believes in doing whatever it takes to keep babies breastfeeding as long as it’s not going to become unhealthy for them.He wants to scope Eli next week. He wants to see if there is inflammation and if so, allergic or acidic. He said if it’s allergic then we may be able to treat the symptoms with steriods and continue bf. If it’s acidic then it’s just a matter of finding the right drugs and dosing. Eli might just have a faster metabolism.So…..I wish we would have found this doc. 3 years ago with Evan. He seems to be eduacated as well as having some common sense. My husband and I both feel like he’s a good match for us. We both like that he laid out the possibillities. Most of all he promotes breastfeeding.The bad….Eli has to be off his meds 5 days prior to the scope. As much as the don’t make things good…It’s going to be hell without them
I am soooo scared. Lots of nursing in the shower, I guessThanks for all the replies.JenniferYay! Glad things are looking encouraging for you guys. When we found our G.I who also seemed pretty awesome from the get go, it was such a relief! Especially when you’re bf and you find one who really encourages you to continue. I’m so happy for you guys and I’m sure Eli will be okay. Tests are no fun especially with no food or meds for a certain amount of time but hopefully this will get to the bottom of what’s going on with Eli and you can all get some relief.
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