Need some advice!

[Anonymous]

Background: My daughter just turned 4 months old and has been suffering on and off since 3.5 weeks old. We started on zantac, then prevacid solutabs (found out she’s ridiculously sensitive to lactose), and she’s currently on 10mg nexium (and has been for over a month). She initally had blood in her diapers, but she has been stinky gas free for a month and negative hemocults for the last 3 weeks. She still has HORRIBLE days 75% of the time. She is on Klaire lab probiotics, takes the nexium on an empty stomach in the am, then gets 2 doses of zantac (one in the afternoon, one in the evening). She doesn’t have specific times of the day where she’s consistently good or consistently screaming in pain, sometimes its all day/night, sometimes its just 1st thing in the am or late at night, etc.

My diet: I only eat potatoes, zucchini, squash and pears and occasionally have rice cereal which doesn’t seem to bother her even though plain rice KILLS her.

So…I broke down yesterday on the phone with the GI np because she had such a horrible night and day, and nothing changed with my diet. They told me they only prescribe prevacid or nexium, and that she’s on the highest dose of nexium that she can currently have. Her suggestion was I’ve done everythign I can and now I should try elecare for 1-2 weeks. She also said she’d talk to the GI dr and get back to me about maybe increasing her nexium to 15mg/day…and called back this am to say he’s not comfortable going over the recommended dose for her age and he also said formula was the next step.

I seriously don’t know what to do. If she is stinky gas/blood free…why would formula help? I asked the GI np and she said she can’t really explain it, but sometimes babies who still reflux horribly even wo blood/mucous in their poo benefit from switching to rx formula vs breastmilk. I feel like I’ve also read that sometimes the rx formula makes them worse…and she said there is always that small chance.

I am willing to do whatever it takes to make my baby better. She’s 4 months old and does not enjoy her life at all. We look back at videos of my son when he was her age and he’s happy on his belly doing tummy time and smiling. She needs to be constantly held, still has to be swaddled and put in her swing to get any consistent sleep, hates tummy time and her carseat so we never leave the house as a family, etc. If formula would help her, I would try it…but I’m just not sure I’m convinced its the answer.

I guess I just need some advice or words of encouragement or something. I’m at my breaking point 🙁

Thanks!

Shannon

[Anonymous]

One more thing on the medicine front – I tried corn syrup solids in my diet and she was AWFUL so tummycare is not an option for us 🙁 I decided to try mylanta w OTC zegerid and generic omeprazole tonight and she completely rejected it. I mean like screaming and spitting and gurgling it to the point that I was afraid she might choke…so that isn’t an option either. I am at such a loss. Does mixing it with tums make it taste any better? I just know the nexium isn’t the answer with how bad she’s been. And I’m not sure formula is the cure all either? Ugh!

[Anonymous]

I just joined this site and wish I would’ve known about it several years ago. But I guess maybe now I can be of some help here to others that are going through what I did. I know how you’re feeling! I’ve been just where you are now. It hurts to see your baby in such pain all the time.

It is late now and I need to go to bed so rather than write out my story of what I went through with my boys and what I found to help them, I will post a link where you can read my story. It is a testimonial on the Core Health Products website where I purchased some products that helped my children but I am not trying to sell anything. I sent them my story and asked them to please give it to anyone and everyone. And it’s a fast, easy way for me to get my story out to other moms too.

I haven’t ever posted this link before so hope this works. A Mother’s Cry For Help

I wish you the best and hope you find some relief soon for your little one! Happy Mom2012-05-06 23:30:17

[Anonymous]

I just know the nexium isn’t the answer with how bad she’s been. And I’m not sure formula is the cure all either? Ugh!

[Anonymous]

Thanks Happy Mom for your response! I read your story and really enjoyed it! We are going back to naturopath this week so I’m going to take her info on Core Health and see what she thinks. I’ve been on probiotics and so is she, just haven’t started enzymes yet. We started her on a homeopathic remedy but lactose is an inactive ingredient and even though the dr had never seen anyone react to the lactose (because its such a small amount and she was only on 1 bead where others take 3)…she still reacted 🙁 She screamed and puked for 2 days. I swear this girl can’t catch a break.

So I broke down to our regular ped on Friday (left a desparate message with the nurse) and our dr called me back right away. I told her everythign thats been going on and what the GI specialist told us, and she wanted me to bring her in that afternoon. She switched her to omeprazole and wants us to get her a barium scan asap. She told me formula is not the answer since I have been able to clear her blood/mucous with my diet. So today is the 3rd day of omeprazole instead of nexium, and so far we’re not seeing a big difference but I’m hoping it will just take a couple days to see results. We need to see results!

[Anonymous]

Yes, you do need some results! I feel really badly for you and hope you and your baby get some results SOON!!

[hellbennt]

how is everything going?

[Anonymous]

Crossing my fingers right now because everything is going GREAT! After this last post I called our reg ped (who has been our son’s ped for 2.5yrs) and just told her everything about my conversation w the GI, how desparate I felt, and how I was hoping she could help since we’ve been established with them for so long and I know she takes me serious. She had us come in that day and changed her from nexium to omeprazole. We’re on day 6 of the new med and she is seriously a totally different baby. She also wants us to get an upper GI done to see if there is anything wrong anatomy wise with her. SHe was most concerned about how our daughter acts like it is so painful to be on her belly, in the carseat, cradled, etc. Over the past couple days, she has actually spent a little more time on her belly, had a successful car ride, and has been letting me snuggle her more than ever.

Given the changes with the med, does anyone have any advice on if they’d go thru with the upper GI? My only concern is she reacts to everything, and I would hate for her to react badly to barium…

[Anonymous]

I know that “hellbennt” asked how things are going but I’ve been wondering the same thing. So I hope I’m not butting in here!

That’s great that things are going better! I’m so glad! 🙂 Now this is just my opinion on the upper GI… one of my boys had one done and it proved that he had acid reflux. WOW! That was nothing new! I have read many times that that is often the only result that people get from that test. If your baby is doing well and you don’t need to prove anything to anyone, then I wouldn’t have it done. But if you are worried about your baby and she still has lots of problems, then I would consider it.

But I bet Laura will have more and probably better advice on this! 🙂

[hellbennt]

I agree w/ martha. at this point an endoscopy would give you more info, I do believe. the upper GI looks for structural abnormalities- not reflux. an endoscopy would take a look & see how irritated things are and take biopsies so you’d know if there are eos cells (presence of allergy/intolerance) and also esophogeal thrush- but I’m not saying to go for an endoscopy at this time! only if things don’t improve! it’s good for when babies are refusing to eat (so you might get a better ‘picture’ of why) and when there’s a tremendous amount of pain. my son never got one bcse he ate (comfort eater) and bcse once we incresed meds, etc, he improved drastically…hang in there!

[Anonymous]

Thanks so much for both of your thoughts! I’m leaning towards not getting it done as long as she continues to do as good as she is doing right now. I would hate to not do it if she does have structural abnormalities that are causing her pain when she’s on her tummy – do all reflux babies act like it hurts to be on their bellies? I’ve read that some sleep on the stomach…there is no way she would ever relax on her belly, it seems to hurt her so much. Think that’s just from reflux or could be somethign else? I know that no one can say for sure, just looking for opinions 🙂 !

[Anonymous]

Well, that is a good question. I guess my boys mostly slept upright in a swing, bouncer, or my arms. If I laid them down it would’ve been on their stomach though. I was afraid they’d choke on all the reflux if they were on their backs. It seemed as if they were in such pain so much of the time that I wasn’t sure what hurt when and how.

I think that if it was my child, I would try putting her on her stomach every once in awhile and see what happens. I might also try putting pressure on her tummy with my hand and see how she reacts to that. If it really seems to cause her pain I think I might check into things further. But, again, I’m not the expert!!

Please keep us updated!

[Author]

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