I have a 3 month old baby girl with acid reflux. I have done a lot of research in desperation trying to find answers to my baby's behavior from birth pretty much. She had been extremely gassy and fussy from the moment she was born and has gotten worse and worse. She has a lot of the symptoms that are typical of GER babies....spitting up, fussy, not sleeping well unless held upright, congestion sound in her throat, contant drooling, sudden crying episodes at anytime of the day or night, and most recent a hoarse voice. when she was about 1 1/2 months her Ped prescribed Zantac and now has her on Prilosec. She still is not any bettter. Does anyone have any solutions or advice? She is currently breastfed and formula fed. I have eliminated mostly everything from my diet and Dr. has her on Nutramigen. I am desperate to find relief for my poor baby girl. If anyone can offer any solutions or advice I would greatly appreciate it.
Oh my. How frustrating to see her symptoms getting worse and worse. That is not good. Certainly changing the diet and trying medication are typical treatments for gastroesophageal reflux disease (GERD). I wonder if the doctor has tried splitting the dose of the PPI or trying another brand. Sometimes parents tell me that one brand works better than another. Is the medication compounded (crushed and made into a liquid). Sometimes the compounding makes the medication unstable and it needs to be made every 1-2 weeks rather than once per month.
It sounds like her diet has been modified quite a bit. Sometimes diet makes a huge difference, sometimes not as much. When a mom tells me their baby is gassy, it makes me think the food isn't being digested properly. Sometimes this is a food allergy, sometimes an intolerance. There is a fine line between modifying the diet to eliminate triggers and affecting your nutrient and the baby's nutrient needs.
Some breastfed babies are gassy due to an imbalance of foremilk and hindmilk. Make sure she is draining each breast at each feeding. Some babies only drink from one breast at a feeding, especially if they are eating small amounts or nursing frequently. Also make sure she is not eating all of the time. Let her stomach rest a bit and then resume eating. If she is really fussy, it could be hunger or something else.
I have given you a lot of ideas to think about. Let me know if you want me to give you more information. I have written quite a bit about these topics on this site. You can search on this site to locate the posts.
Please give us an update when you have a moment. I know you are busy but we hope you will come back and let us know how you are doing.
The Reflux Mom
Thanks for your response, I appreciate the support. I hope you don't mind but i'd like to tell you a little bit about her history. First off she was born 3 weeks early. After a week at home, she was re-admitted because of jaundice and stayed in the hospital for 3 days under lamps. Because she was jaundiced, she was extremely lethargic and did not eat well at all so therefore, I had a hard time producing enough milk. Not to mention she wasn't a strong nurser anyway. I stayed in the hospital with her and pumped like crazy to build up my supply and in the meantime the doctor ordered the nurses to start her on formula to get her weight up which was dropping. That didn't help my supply issue either.
Anyways, since then I still have not been able to produce enough milk to breastfeed only. I tried going to a lactation consultant and did everything she recommended and just haven't been able to catch up with my baby's needs. Because she is supplemented with formula as well as breastmilk we went through so many formulas trying to figure out which one is best for her. She's had a hard time with many of them. The doctor thought she might be sensitive to milk and might be a little colicky so he put her on Nutramigen and that is what she is still on. I've been seeing a pediatric gastroenterologist and he recommended for her to stay on this formula since it is the most easy to digest. I am curious to see if she really is sensitive to milk and try a milk for acid reflux babies like similac sensitive r.s. or nutramigen a.r. What do you think? What I wish is that I could just have enough milk for her. She does much better on breastmilk. After every bottle she still spits up a huge amount and it comes up kind of goohy or slimyish. She always sounds like she has phlem in her throat and she coughs and sometimes chokes on it. She'll even stop breathing momentarily and after she either swallows it or spits it up she breathes real fast trying to catch her breath if you know what I mean. It's hard to explain.
I'm thinking about buying her one of those AR or tucker positioners that are elevated 30', do you know if they really work. They are quite expensive and I have a feeling my baby won't like it. She doesn't sleep on her back most of the time. She always rolls and turns to the side...since birth she's done that. I know your not supposed to put them on their tummy but every now and then I do as long as i'm right there with her the whole time. She'll sleep a little longer that way sometimes. Otherwise she sleeps horribly. Little cat naps....5, 10, 15 minutes or so. If I get her in a good sleep she'll sleep longer either in my arms upright or in a front baby carrier. That is what she is in right now so I can finish sending this message to you.
It's taken me about 2 1/2 hours to type this comment to you. She had another episode from 5:50 to 6:20p and is now asleep. What I did notice right now is that I tried feeding her some formula at before her episode because I knew she was hungry but she kept fighting the bottle like she usually does in the evening. She wants it but keeps wiggling around then spits the bottle out over and over again. I went into the kitchen and made another bottle and gave her the breastmilk I pumped and she drank it with no problems. Then she nursed and fell asleep. She takes the formula fine during the day, maybe she's starting to really know the difference and wants the breastmilk. I'm sure it's easier on the tummy, especially when it comes back up. I just don't have enough milk to make sure she has enough every evening to make her full.....very depressing for me. I went through ajor post-pardum because of my lack of supply issues. Up until now, my whole life revolves around pumping and getting my supply up along with these acid reflux issues.
Regarding the medication she's on, it is compounded. The doctor had me go to a special pharmacy in our area that makes it. It is Omeprazole 2mg/ml and a total of 115ml to be given twice a day before meals. I have to shake it really well. Before the Prilosec she was on Zantac...she actually seemed better on the Zantac now that she's on Prilosec but I don't know if it's all coincidence you know? Are you thinking another brand like Prevacid, is that comparable? I will ask my doctor about making less at a time and maybe trying a different one. Thanks for the tip.
Regarding her gas issues, the GI doctor had me start giving her a teaspoon of pear juice in each of her bottles since she wasn't going #2 everyday. She was going every 3-4 days. He said all that #2 was creating gas because of the bacteria and she needs to go #2 everyday. It is working as far as making her go everyday. Sometimes twice. She still has a ton of gas but it is usually followed with a BM.
As far as foremilk/hindmilk issues, I do feed her and empty each breast before offering her the other. I wasn't before, my LC told me about foremilk/hindmilk and I realized after that that there are 2-3 letdowns before I am completely empty. I also pump right after if she'll let me or I pump while feeding her a bottle. I've kind of just had to except that I will not have enough milk to just breastfeed only. Very weird, I had plenty for my son.
Anyways, sorry for talking your...eyes out but I do really appreciate your support. I am so desperate for answers and most of all to get her some relief. She is in obvious pain when she cries and it breaks my heart. She is doing this everyday now and yesterday did it twice. Hopefully she's done for tonight. Thanks again for your words and advice. I am curious to know if you had the same experiences. Would love to hear your story.
Thank you for taking the time to send your message. I am sure you are exhausted taking care of your little girl and another child as well. I can certainly relate as my reflux baby never, ever slept and I held her constantly. My other children were 3 and 5 years at the time. I was so tired that it hurt. I ended up writing it all down in my book, Reflux 101. I can tell you that you will survive and your baby will get better. Key for me was taking one day at a time. If that was too much, I just took one moment at a time.
One thing that I have learned from talking to hundreds of parents and hearing their stories is every baby is different. Your journey will be similar to others but the treatment plan will be unique for your daughter. Unfortunately, there is no one size fits all treatment for reflux. You and the doctor will need to work together and try one thing at a time to see what makes a difference.
Here are some areas to discuss with the doctor:
1. Positioning: I am hearing that she has trouble sleeping and seems better when elevated/held. Ask the doctor if a wedge in the crib or for day time positioning would be a good idea. Often insurance will pay for this with a script from the doctor. I have described some of these products in articles on this site. The AmbyBed has been recalled so that may not be an option right now.
2. Constipation: Constipation can make reflux worse. It is important to address this issue as it can affect eating, sleep, fussiness and the severity of the reflux symptoms.
Some babies have slow digestion or motility.
3. Gassiness: May be due to constipation or food intolerance. You and the doctor may need to revisit this again. Sometimes a change of diet can help. I have had success with probiotics with my girls for gassiness and overall digestive discomfort. Probiotics may not "fix" the gassiness but again it is something to look at.
4.Breastfeeding: It is a great deal of work but it sounds like her "comfort food". My daughter was the same way. I wonder if there is a way to get more assistance for you- I used to go to bed for a day to increase my supply. Exhaustion, lifting toddlers, etc, etc made my supply decrease. Be sure to explore other self soothing methods for her too. Is she still hungry or seeking comfort? My daughter was a real comfort nurser and wanted to nurse 24/7. It helped her push the acid back down-she was trying to fix the reflux. I ended up wearing her as much as possible.One of my reflux babies liked a pacifier, the other did not.
5. Formula: there is no one formula that works best for all babies with reflux. I know, it is so disappointing. But there are several good options. If you want to revisit this with the doctor, it is worth a try. Diet can make a big difference for some, whether or not there is an obvious intolerance/allergy.
6. Medication: Compounding Prilosec is fine but if you notice a worsening of symptoms after a few weeks, it may mean the medication needs to be refreshed more often. I know the compounding has improved over the years.
7. Choking, etc during feeding. With the history of nursing issues and the choking, coughing, etc it might make sense to talk to the doctor about evaluating her swallow. Sometimes the doctor will do a swallow study or upper gi test. A speech language pathologist with training in feeding can evaluate her feeding and look for sensory or swallowing problems that might affect her ability to nurse and digest properly.
You and the doctor will spend quite a bit of time together during the next few weeks/ months as you look at each treatment option and slowly try one thing at a time. This will feel like slow motion but it will lead to a reflux plan that works. You will eventually get the upper hand on this!
I find that it really helps the doctor if you track symptoms. This may be hard to do every day but maybe you could choose 1-2 days to write down every feeding, medication, waking, sleeping, crying, choking, etc.
One more thing-has she had any reflux testing? Just wondering.
Big hugs to you-
keep in touch-ok? If it is easier to talk on the phone rather than type, send me a message privately and I will send you my direct line#.
Hi Jan, Thank you. That was a lot of information. I don't know if you received my personal message. I may not have done it right but I would like to talk with you sometime when it is conveinent for you. I'll send you my personal email address and you can give me your number that way. firstname.lastname@example.org
I look forward to hearing from you.
Hello! I did receive your private message and I will call you today.
I wanted to thank you first of all for your call and all the great information. It is so comforting in this difficult time to know I have support from people who really care and are trying to help. So thank you.
Her appointment went well...I guess. He is insistant that it's reflux and said that sometimes babies just don't respond well to the compounded Prilosec but he didn't want to start her on Prevacid until she was 3 months. So now that she's 3 months, he gave me some Prevacid samples and a script and told me to start with that. Then, if she is still uncomfortable and the Prevacid isn't working great then he told me to start Zantac and give it to her in between. Prevacid in the morning and at night and Zantac in the middle of the day. He also gave me an order for a barium swallow and said that if the Prevacid and/or Zantac fail then to take her up to the hospital for the test. He explained that he likes to medicate with these "safe" meds first and if she gets better or isn't in pain anymore than we know that it's just reflux and are now in control of the acid. But if she's not better then we'll know that she has a more severe case and needs further testing. So, he has me all set up and i'm to follow up with him in 3 weeks or if we have the test done, 2 days after the test. Soooooooo, what do you think? Exactly what we thought he was going to do huh?
I wanted to ask you if you think I should go ahead and start the Prevacid now or wait until she starts having symptoms again? I didn't give the Prilosec yesterday or today and she is much more content. She's fussed a little but not hardly as much. Is it common for it to kind of lay "dormant" and come back with a vengeance? It's kind of strange how she seems a little better now.
Also, he said that I could buy over the counter Mylanta or Maalox and give that to her for immediate relief. He said all would be safe to give her. What do you think?
When I asked him about yeast overgrowth his reaction was kind of funny. I can't remember exactly what he said but he basically said "no, she has reflux".
Anyways, hope you're doing well. Hope to hear from you soon. Thanks.
I am so glad we had a chance to talk by phone before your appointment. It sounds like you had a very productive visit with the GI specialist. He is taking things one step at a time-the best approach when a baby has GERD. It can seem like slow motion to us because as a parent, we want quick and 100% effective results. Unfortunately, reflux doesn't work that way. The doctor gave you many options for the next few weeks until your next follow up appointment. That is wonderful.
It is interesting that she is better without the Prilosec. Sometimes there is a better response off of medication. Other times, the symptoms return in a matter of days. In any case, you have some other medications and medication combinations to consider. I think he said start with the Prevacid and then add Zantac if needed.
I will try to reach you by phone on Friday so you don't have to type so much.
Sorry it took me a while to get back to you. It was a rough day today. My mom broke her foot yesterday so I had to drive her to the doctor and the baby also had an appointment today. It was just a hectic day and i'm exhausted. Hope all is well with you though.
I think you're right about symptoms returning in a matter of days. She had a horrible day today. Extremely fussy and unhappy. I think one of the hardest things for me right now is getting her to drink the formula they want her on. She is starting to refuse it more and more. She really wants to nurse but gets frustrated when I run out and she's hungry. I desperately want to breastfeed solely but just can't get my supply up. I'm sure the stress of all the reflux problems is not helping my supply issues either. I just don't know how to not stress when i'm dealing with this day in and day out.
Another problem right now is getting my husband to agree to start her on the Prevacid. He thinks that the Prilosec failed and since she did worse on it he is against any more medication. He didn't want to do any meds in the first place but the doctor convinced us that she would get better and since she didn't he's feeling like medicating her is not the right route. Any advice on what to say to him?
Also, what do you know about Prevacid and Prilosec containing milk or milk protein? I'm not absolutely sure if the baby is sensitive to milk but if she is then those meds won't really help her will they? The pediatrician that I saw today looked up the Prevacid solutabs and said that they contain lactose. That's the only reason i'm a little hesitant to start her. Also, the GI doctor told me that if I wanted to I could introduce milk back into my diet and see if she really is sensitive. I'm afraid to though. What she goes through now is enough, I hate to see her worse you know? He also said that if I don't want to do it that way then I could try her on a sensitive formula like Enfamil Gentlease or Similac Sensitive which contain more broken down (whey?) and is easier to digest. I'm just so overwhelmed. What do you recommend?
Well, I know it's a lot and I probably sound like a huge stress mess but I do appreciate your help. My husband told me that I need to stay off of the computer because i'm stressing myself out more, but I told him that I actually feel more relieved talking with you and other moms who've been where i'm at. It's comforting you know. Plus, the best info is from real experience. Anyways, thank you again. I think that the phone number you called me from is a Maryland phone number. I am from California...is it a 3 hour difference? Just in case it was I didn't want to call too late so I will talk to you soon.
I will try calling you today. I am in Maryland so we have a 3 hours time difference.
I think the reflux treatment is really complicated. There is no "one size fits all treatment"-every baby is different. Also, there are several treatments such as diet, medication, positioning and homecare techniques. The doctor will have you try one or several. Sometimes the doctor will start with a high dose of medication and back off. Other times the doctor will start with a low dose and slowly move up to a higher dose. The doctor is taking into account your report of the symptoms, the physical condition of the baby and what has been tried so far to assess the needs and the best course of action. At this point, you have several options. You and your husband and the doctor need to decide on a course of action. Maybe you need a phone consult with the doctor at a time that your husband can be in on the phone call?
I am concerned that she is having a hard time drinking the formula and nursing. This is often a sign that there is some pain/discomfort with eating. Sometimes a change of diet is helpful, other times it is medication. Some babies need both medication and dietary changes. Again, no clear path. I am so sorry...
In contrast, I used to be so happy when the doctor announced that one of my kids had strep throat. It was so easy-swab the throat (easy test, fast results), write the script and in a day or two, there was 100% improvement in symptoms. No mess, no fuss, no repeat visits to the doctor, change of treatment plan or additional worries. So different than reflux.
Hang in there.
Hello Tanya, Oh my. I will call you in a moment. A visit to an urgent care or ER might be a good idea today. Jan
Hi Jan, hope you're doing well. I wanted to update you on what's going on with the baby. I received a phone call from her Ped last night and he said that her bloodwork showed that she is a anemic. He is starting her on some iron and will retest her in 6 weeks. He called this morning with her urine culture results and said that they were negative for growth but positive for contamination. He had me stop her antibiotics that she started yesterday. I'm a little unsure about the urine results because the first test came back positive and the office dip came back positive but the culture came back negative. I also hope that starting and stopping the antibiotics doesn't mess her up and make her more susceptable to something else or to a UTI if she does have one and makes it worse. He said that it showed contamination because his assistant went to catch the urine when she started to pee and touched the specimen cup against her skin. I hope he's right.
Well, I hate to say it and jinx it, but the baby is doing pretty good on the Prevacid. We did start her on it a few days ago and she seems to be doing well....well enough that everyone is noticing the difference in her. I just don't want to give my hopes up you know, but I really hope it's working and she continues to improve. I'll keep you informed on her progress. I have to thank you again. I really want you to know that you helped me more than you know and I appreciate it. If anyone ever needs to talk to me or if I can ever help anyone I would be happy to try. Talk to you soon.
I was just thinking about you and your message popped up. Excellent timing! I am glad the Prevacid is working. You and your little one need some pain relief right about now. I hope you both take a big nap today and wake up feeling better. Make sure "taking a nap" is high on our To Do list-ok?!
Now the anemia is interesting. Some babies have anemia due to reflux and Milk Soy Protein Intolerance. This will need to be watched.
Not sure what to make of the urine testing. I know you are going back and forth to the doctor quite a bit but if the fussiness returns or she has other symptoms (fever, poor sleep, fussy, etc), call the doctor.
Thank you for your offer to support other parents. Other parents can contact you by clicking on your screen name and they will be able to send you a secure message through HealthCentral.
Hi Jan, I will make sure to get nap time in. I am starting to work a little from home but will take a nap with the baby in the afternoon. You know, now that you mention "poor sleep", she has been sleeping horrible the last 2 nights. I mean, waking up constantly and kind of fussing and rubbing her face like mad. I thought maybe her face was itching or something or a tickle in the nose. She has a slight rash on her face but it doesn't seem to bother her in the day at all. The weekend is now approaching so I hope it's not anything more serious....like the UTI is back and on a friday. Well, hope you're doing well. Talk to you soon.
Hello Jan, just wanted to say Hi! Hope you are doing well. Baby is doing pretty good. She still has her days but not as bad as before. Well, I hope the weather out where you are isn't too rough. Talk to you later.
Happy February! Thanks for the update. It was great to hear from you! Do you feel like her symptoms are more controlled? Is she still having those choking episodes? I hope she is sleeping a bit more.
Take care and keep in touch when you have a moment!
Hi Jan, I feel like her symptoms are much better. Not completely under control but much better. She still has bad days. No choking episodes, but she isn't sleeping great yet. She still wakes up often. The doctor just increased her dose but I might have to start using the Zantac in between. Well, she's crying now so I better go. Talk to you soon.
My first child a boy he is now 29 was the same way. My DR. told my when he starts sitting up he will quit that and he did. I kow this isn't much help but there is light at the end of the tunnel. I used to have to take a change of clothes for me because he would spit up all over me. I was even nursing so couldn't blame it on the formula. My advise would be to work on helping to learn to sit up. Lot of luck, enjoy your baby because they grow up tooo fast. Vicki
I will offer you this bit of info, mine is almost 4 months old with Acid Reflux/GERD, I bought a Fisher Price Newborn Rock and Play Sleeper Hammock Style Bed (you can get them from Target about $54 or Walmart about $48, I rotate her on her sides, because I will not let her sleep on her back (we are scared she will chock), it is reclined and kind-of snuggles them, she absolutely LOVES IT...It takes up about the same amount of space as a Bassinet, it has been a life savor...He your baby girl grows out of it...
My daughter is now 2 months old and all the symptoms match your daugter's. Could you please summarize what helped with your daughtes acid reflux problem.
I think she is 2 years now ...how is she doing now? Is the problem gone completely?
I hope you can answer my question. I'm desperatily waiting for answer.