Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › I am scared…
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July 19, 2007 at 11:53 am #39534AnonymousInactive
Hi, Meg’s GI appt is on monday, but in the me time I am worried that her reflux is getting worse. She had 3oz of formula at 3:30am and hasn’t had anything till 11:15am. I kept trying….she cried a lot and finally started to sleep, so I decided to feed her while she was sleeping, she actively drank a little more than an ounce and started screaming and crying real bad. She stopped, burped, passed gas and movement. She is fine and playing now. But I look at her stomach, it so down, there is nothing in there 🙁
She is just soothing herself with her fingers in the mouth all the time. I am so worried and scared that I might end up taking her to the hosp.Feeding is becoming a nightmare. And when I see her crying in pain I break down into tears too…I dont know what to do…Mylanta is making her go more often 🙁 so I dont want to give her anymore.She is playing and smiling and normal otherwise….It pains me to see her smile now 🙁 knowing what she is going thru….missing my husband and family…feeling so alone today.Do babies just look at nothing and talk and smile…she does that sometimes…..She is such a sweet baby and it is so unfair that she suffering so much…wish I could help her….my poor little oneThanks for letting me get it out….I keep praying for her to get better…..July 19, 2007 at 12:07 pm #39535AnonymousInactiveOh, I am SO sorry this is so hard for you right now and your sweet baby. My heart is breaking from you. I know exactly how you feel as do many other mommies here you have gone through or are going through the same thing. I don’t really remember your story but is she on any meds right now? Does mylanta help her feeds at all? Is there a way you could get a script for Carafate in the meantime? It’s like super-strength mylanta and though it didn’t work for my baby, it has helped a lot of other kiddos here. It is a prescription though and is just a short-term fix but maybe that would help you both get through the weekend?
Gosh I really understand your feeling of helplessness and feeling so alone. We live in Indiana and my husband works ALOT. I really didn’t have anybody here that I could really turn to or who could come watch the baby while I take a walk or something just to take a breath. This is so much harder then I could’ve ever imagined but I can give you hope in telling you that with the right meds,formula,doses etc… it does get better!!! Hopefully your G.I will have something really great to suggest to relieve Meg.In the meantime, we’re here for you and you can totally do this!! I know you’ll find some answers and I will pray my hardest they come fast. Meg knows you love her and are doing everything humanly possible even though she’s struggling. You guys are going to be okay!!!I know it.July 19, 2007 at 2:18 pm #39543AnonymousInactiveOh, my. I do remember those horrible days when they just won’t eat and you know they just have to be hungry. Is she still wetting some diapers? You have to really watch for dehydration when they get to the point where they are eating so little. Monday may as well be an eternity away when things are so bad. I really feel for you.
If you did end up in the hospital before Monday it might turn out to be a good thing. The doctors will see that something is most certainly wrong and that something must be done. Babies don’t refuse food unless something is wrong.You could try spoon feeding her if she just won’t take a bottle. I know it sounds weird, but I had to spoon feed my son breast milk for a long time. It’s time consuming and messy but it works for some babies.Yes, babies do just smile and talk at nothing or no one. They are having happy thoughts and feeligns. My daugher used to coo and coo and smile like crazy at our ceiling light fixtures. We used to joke that she was seeing angels up there, but who knows, maybe she was.I will say a prayer for your little sweetie.July 19, 2007 at 3:07 pm #39555AnonymousInactiveI’m so sorry that your little one is going through this. I know all too well how you feel and reading your post brings back a lot of difficult memories that I must have blocked out.
The behaviour that you describe sounds a lot like my little one at that age, except that she was never happy. What’s she doing when you try to feed her? I know that she refuses, but does she start out willingly and then arch or pull away or does she scream when she even sees the bottle.I’d call your ped back and tell him/her that you can’t wait until the GI appointment on Monday. I’d also call the GI’s office and urgently ask them for any cancellations. Tell them that you’ll end up in the emerg if she’s not seen ASAP, even though it might not be true.Like Christine said, I’d look out for signs of dehydration, and if you’re not sure, then I’d bring her to the ped to take a look. While you’re there, I’d try to get your doc to prescribe an aggressive dose of PPI rather than zantac or an acid blocker or a motility med like reglan. Check out http://www.marci-kids.com and they have lots of information about PPIs and dosing, and follow aggressive dosing guidelines. My daughter has had a terrible feeding aversion due to her reflux. She was put on a PPI early, but it was a compound that wasn’t being made correctly, and her dose was average. Her pain escalated and the feedings became impossible. I think that when they start showing signs that it’s too hard to feed, they need aggressive dosing of PPIs to get things on track. Also check out Laura’s intro, and know which kind and type of PPI you want, and what kind of dose you’re interested in. I’m glad to hear that she took a bit while sleeping, but be careful of your doctor saying that it’s fine b/c she ate eventually even though she was asleep. Feeding asleep might be a short term solution, but over time it can lead to them only accepting feedings while asleep, which is what happened to my daughter. If you do go to the ER, or if you see the ped or GI before Monday, I’d personally go with a PPI over other meds (as I said before). Often, they’ll weigh the baby and if they’re not losing weight, they’ll send them home with a script for zantac and/or reglan, and say to thicken the formula with rice, keep them upright for 30 minutes after a feeding, and to elevate the crib and then send you on your way. I’m not saying this to scare you, but only b/c I think that knowing this possibility before hand can help prepare you for what to ask for in advance. As I said, I’ve been there, and I really feel for you. Having a refluxer can be really hard, but feeding problems are absolutely terrible and make you feel helpless and scared. How much formula has she taken in within the last 24hours?About the staring and talking etc, yes that’s normal for her age. She sounds adorable. I’m sorry that you’re feeling alone. Is there anyone nearby that can come over and give you a hand and some company? Anyhow, I hope that things improve soon. Feel free to pm me anytime if you need a shoulder to lean on. Keep us posted.July 19, 2007 at 3:32 pm #39558AnonymousInactiveoh my that sounds so familiar I am so sorry your little one is hurting like that . i don’t know if this make you feel any better, but kendra was never happy at that age. she just cried a lot and slept very little. If you have to take her to the hospital, do so. Dehydration is pretty bad and sometimes like Christine said, doctors will do more testing and take things more serious when the baby is in the hospital. Iam sorry i wasn’t of more hlep. i can tell you that it has gotten better with time for us.
hang in there and pm me if you just need to vent or talk about it. iam a good lsitenerJuly 19, 2007 at 3:58 pm #39560AnonymousInactiveThank u all for ur support.
Lori – I took her to the ped so many times in the past two weeks. Every time I took her, they checked her weight and did a physical. Her wt gain has been good so far and looked hydrated, so they send me home with a patronizing smile. (I feel like screaming at them….) She was seen last friday and even on Moday….I called the office on Tuesday ( the lady who answered said – “what today?” Grrrrr) All she coulf say was that it is ok to give Meg Mylanta 5 or 6 times a day. I did not like it. I keep trying to get some thing in her stomach. She had 16 oz y’day with great difficulty. I dont think she will eat as much today. Anyway, I’ve been crying all the time. I tried to get some other GI atleast. Finally, I found one. I am taking her first thing tommorow morning. She is crying a lot today. At 1:30 I fed her 3 oz once she started sleeping after all the crying…..after the feeding she cried, napped for a short time but woke up. She whimpers while playing or cries. She cried herself to sleep on me….I cant wait to see the GI in the morning…*sigh*
July 19, 2007 at 5:08 pm #39565AnonymousInactiveI’m so sorry that you’re going through this. It’s awful. Sounds like you’re being treated the same way I was. I went through so many doctors because no one would do anything but weigh her and tell me the basics that I already knew. Good luck at the GI tomorrow. The best thing I can say is to go in knowing in advance what you want from the appointment. Make notes and be firm. HUGS.
July 19, 2007 at 5:55 pm #39568AnonymousInactiveyep…I am planning on making some notes tonite while Meg is sleeping….thanks to all once again for standing by me…especially since I do not have any help right now…cant wait to see dh tommorrow nite…buy do I miss him!! Will let you know about how the appt goes…
July 19, 2007 at 7:45 pm #39572AnonymousInactiveMeg is so cute!
July 19, 2007 at 7:58 pm #39575AnonymousInactiveJust now seeing this! Wanted to say hello and how sorry I am to hear about your little one (who’s adorable, by the way). I agree with all that’s been posted. Go to the GI armed with info. and don’t let them talk you out of getting her some real help. The doctor’s don’t live with her, and they don’t see how she suffers all the time, so their main concern is the weight gain issue. Stick to your guns and listen to your instincts. I hope your appointment goes well.
July 20, 2007 at 10:16 am #39618AnonymousInactiveSorry I am late in responding to this. We went through the same thing with Brian last week and I was crying my eyes out. Brian is 2 months old and weighs about 12 lbs. He started taking only an ounce or two at a feeding and then he would just cry and cry and not take anymore from the bottle. I was at my wits end. We had to wait a few days to see the GI and she put him on Carafate and it has worked wonders for us!! Definitely ask about Carafate! It is a prescription med and works better than Mylanta (fyi, if you are using Mylanta, try to get Mylanta Supreme not regular Mylanta). Carafate coats and soothes the esophagus so that it is not painful for the baby to eat or burp. We saw improvement the next day. It has been several days now and Brian is finishing every bottle. He still cries when I burp him during a feeding but he will go right back on the bottle after he has burped. I am now a huge fan of Carafate! Brian gets 0.5 ml 3 times a day a 1/2 hour before a feeding. The Carafate has to be given at least 90 minutes apart from a PPI like Prevacid and at least 60 minutes apart from Mylanta. We will be using it for a month and then we have a follow-up with the GI and she plans to take him off it at that point and just keep him on the Prevacid.
Hang in there! I know it is really frightening and overwhelming but it will get better!July 20, 2007 at 2:18 pm #39641AnonymousInactiveHello All,
So I took Meg to the GI today. She prescribed Prevacid 15mg per day (Solutabs – but looks like the prescription did not say that clearly so the pharmacy gave me capsules. I amtrying to return it and get the solutabs…hope they take the capsules back.) GI was open to increasing the dose if the current dose does not help. Also, she asked to me try Alimentum or Nutramigen (sp?). I have decided to try the Prevacid for a couple of weeks before giving the formula switch a chance. Dont want to do both the changes at once. IU was told to give Prevacid 30 min before the morning bottle and axid 20 min before the last bottle for the day. (I might have been giving the axid incorrectly a few times, coz I used to give it right before the bottle. GI said that usually dilutes the medicine.) I also asked her about Carafate, but she said no. She wants me to try Maalox instead. I will give that a shot too…hope Meggy starts feeling better. I have also scheduled a Barium swallow UGI for Aug 2 to check for any aspiration.Thats the update…hope Meggy starts feeling better…I feel like a load had been lifted from my shoulders just by seeing the GI even though I havent started the meds…Guess it is very easy to make me happy…..or sad *sigh*)(even if you guys roll your eyes…Meggy got a lot of compliments today, esp her hair…it IS a lot and dark and silky )Thanks once again you guys…will keep you updated.July 20, 2007 at 8:07 pm #39655AnonymousInactiveShe is a little doll and that hair is amazing!
I’m glad you are feeling encouraged by your gi visit. It sounds like she’s up on the current research because she said he’d increase the dose if it doesn’t work. That’s great.That’s too bad that the pharmacy gave you capsules instead of solutabs. I hope they don’t give you a hard time returnig them. It was their error. If worse comes to worse you can use the capsules by opening them and sprinkling them over applesauce.Well, I sure hope she’s feeling better soon. Keep us posted!July 20, 2007 at 8:42 pm #39662AnonymousInactiveI just read your posts, and just wanted to encourage you and let you know that we have all been there, and you are on the right path! I know its easy to feel alone in it. I used to feel overwhelmed and would just cry, but once i got in touch with the ped GI, and would set plans with them, it made me feel soo much better as well.. as if someone else is working on it with you, and you dont have to solve it all alone. So, she will get better, the meds might take a week or 2 to fully help, but its great you found a GI that will up the dose. Also if your pharmacy doesnt have solutabs, you can tell them to compound the prevacid by the marcy kids standards, that way you dont HAVE to wait the 30 min. .. i know its hard to do with a baby that is still in pain. But, we have had good luck with the solutabs, so hopefully they wont give you a problem! and yes, keep us posted on how it all works!
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