AnonymousInactive
Hi everyone, this is my first post so I hope it works! My daughter- Emilie-Rose- is 15 months old and was diagnosed with severe silent reflux when she was 8 months (she never vomited until 2 months ago). She was put on losec and it helped almost imediately but she failed to ‘thrive’ (only put on 1kg in 7 months). She completely starved herself yet again when she hit 1 year and was hospitalised and given a NGT. She has now been on the tube for 2 months and put on nearly 3 kg- horray!!!
I’m writting to you for advice on how to ‘wean’ her off the tube and back onto solids. She is still on the losec but is vomitting on average once a day. Her DR’s and feeding team say she has a severe behavioural association with food and pain. I feel like I am trying everything under the sun but she still purses her lips, shakes her head and absolutely refuses to eat or drink milk from a cup/bottle. Some things we have tried is making ‘eating fun’, whereby we ‘feed’ her animals in the highchair etc; offering varied foods-different colours, textures etc….
She was a breast feed bub until 13 months, I accept that she may never take milk from a cup etc and may only get her calcium/protein etc from solids…. but I really feel STUCK and completely overwhelmed because I dont see any light at the end of the tunnel.
Does anyone have any tips to get a toddler with reflux to eat? Do I have to accept that she might be on this tube for a long time or even resort to surgery?
I welcome your ideas.
Cheers,
sophie2006-5-10 20:16:30
I hope the formula works for her!Are you pumping in case you want to return to breastfeeding?
as for the reflux/gas relationship:
what’s the connection between gas and reflux?
Gas is created when something isn’t digested properly; for example,
beans are generally harder to digest than other foods, which is why
they are notorious for causing gas in most people (they are generally
not a common problem with breastfed babies through mom’s milk, though;
this is just a common example to help make sense.)
Also, gas puts pressure on the esophageal sphincter (the muscle at the
top of the stomach that helps move and keep things down), making it
easier for whatever is in the stomach to be refluxed.
AnonymousInactive
Hi Karen,
So sorry to hear you’re going through this. I know it’s tough.
Just curious-do they have any idea of why she has the reflux? My son had/has an extreme case of it. It took us a month of prevacid (30mg) to see a difference and even then it comes and goes. We also didn’t see a result on meds until we took rice out of his bottles. I don’t know if your formula or breastfeeding but if so, maybe a diet change? I would break up the dose as well.
Finally, Ian had colic on top of everything else-allergies/reflux. And it literally disappeared like magic after 4 months so I”ll cross my fingers for you that it’ll be the same.
Hope this helps.
Tracy (Ian’s Mom 9-26-05) Elecare and prevacid
AnonymousInactive
Hey all,
I haven’t posted in a long time since Robbie is just about perfect now. He still spits up, but no more pain and no more meds! He is a whopping 20 lbs. 15 oz. and 29.25 inches tall! Big boy!
Anyway, my question does not concern him. I have this sister in law…and my suspicion is that she hates me. She has never said so but she really does not seem to care for me AT ALL! We just don’t click.
She just had a baby (#2) on March 31. Some background — he was supposed to be a twin but the other was vanishing. He was pretty tiny when born, and looked like a preemie. He has been a spitter from the beginning. Every time they lay him flat, barf. Thursday night/ Friday morning, he was rushed to ER because he spit up blood. They gave him Zantac and said it was probably erosions from reflux due to the history of spitting. He eats pretty good, but she has always had to wake him up to feed him and he tends to give up and have to be coaxed at the breast. No Sandifers that I know of.
Now here is the deal…she took him to the ped yesterday and he said it is NOT reflux because he eats and pukes a couple of hours later. To my knowledge, that does not rule out reflux, right? Robbie has always been like that. Two hours after eating he would barf. Still reflux. Also, they can’t lay him flat because he throws up all over the bed. If they hold him upright he won’t puke. But the whole household is insisting that it’s a virus.
So my first instinct is to help and offer my experience with these matters. But she can’t stand me and is just positive that there is no way he can have reflux. Part of her reasoning is that breastfeeding prevents all problems in children. Ladies, all I really want is an opinion about the reflux thing. Do you think it sounds like reflux? How do I tell her to seek a second opinion if it is? Please help me out here.
TIA
Sarah
HaggisMama2006-5-10 16:31:11
AnonymousInactive
Hi Amy & Welcome
If your son is intolerant to milk and soy then unless you are breastfeeding, then you need to give him a formula like Nutramigen or Alimentum and if he cant tolerate those then Neocate or Elecare. If he is not having any dairy then you need to give him formula as his milk drink, it will supply all his calcium requirements.
With intolerances most babies will grow out of them by 2 or 3, so hang in there. In the meantime, I would search for a good allergist and keep trying until you find one that will help you. The other thing you might consider is a ped dietitian that specialises in allergies to help with his diet. There are plenty of non dairy and soy alternatives, you just need to be very careful with reading labels and checking ingredients.
You say that he is gluten intolerant – has he been tested for celiac disease? Are there any grains that he can tolerate? Does he tolerate fruits and vegetables?
We have been through all the things you have mentioned but we have it under control now with the right medication, and very careful diet. It does get better.
Perhaps post the location where you live and maybe some other mothers on the board can recommend doctors in your area.
Glad you found us, hope we can help you.
AnonymousInactive
I never saw zantac cause a rash in my two kids. Is it listed as a possible side effect from the pharmacist? Perhaps it is that nasty peppermint flavoring they add to it. Are you giving it straight or mixed with something? Best thing to do is document when it started, where the rash is, and any changes with formula/or your diet if breastfeeding, call your ped.
AnonymousInactive
At four months I only gave my first two about 2-3 tbs of cereal twice per day. Ellie wouldn’t drink breast milk or formula if it was thickened at all. If it’s not in their bottle I don’t think it helps much with reflux, so the only reason to give it to them is to introduce them to spoon feeding, or to supplement their diet if they are not getting enough from bottles. (This is my opinion anyway, maybe someone else knows if spoon feeding cereal helps with reflux).
Myles does take cereal in some of his bottles and I think it does help with his reflux. And, he does drink less when it is thickened. (3-4 ounces instead of 5). Are you not putting cereal in his bottle because he doesn’t drink 6 ounces when you do?
If he’s keeping down plain formula, then I would say it’s fine to just feed him un-thickened formula and give him a little cereal with the spoon. If he really needs thickened formula in order to control his reflux and keep it down, then you shouldn’t worry too much about him drinking less. It’s only natural that he will drink less becuase the thickened formula is so much more calorie dense.
If Marshall is eating enough with his unthickened bottles (and keeping it down), I wouldn’t worry too much about feeding him solids at this age. Just a little cereal like you are giving him to get him used to the spoon is fine. And yes, he will likely drink less formula as you increase his cereal intake.
I hope that helps. Sorry, I tend to ramble!
AnonymousInactive
I actually bought a kind called PB 8 (pro-biotic acidophilus for Life. . .with 8 different types of “good” bacteria). Since it is an adult formula, I am giving him a quarter of a capsule twice a day, as recommended by the nutritionist. I didn’t notice any changes, but then I stopped after a couple of days because of the loose stools. However, I had Henry to the ped today and she said that the Nutramigen could cause the loose stools (we have totally switched from breastfeeding to this). So now that I know it might be the formula I’m going to start using the probiotics again. On the other hand, today I gave him organic oatmeal at lunch (I had stopped all solids) so maybe today is not a good day to start back up so I can tell how he is reacting to the oatmeal. I saw that a lot of people use the Nature’s Way probiotics for kids that is refrigerated. If we don’t have success with this, perhaps I will try that. There are just always so many variables. . .it is hard to keep track of everything!
Are you still having success with sleeping?
Ruby
Henry, 5 months old, reflux
Breastfeeding on the eat-nothing-that-you-like-diet and Nutramigen
7.5 mg prevacid 2x a day
ainsleymom,
I tried sending private messages to 2 mothers from TBW who are near you- I hope they respond…in the meantime, can you get to LLL to get some help?
~laura
HEY! 
I got a response! Email via the ‘profile’ button on the bottom of this post- click on it & a window pops up and then look for the ’email’ button & click on it and email me so I can put you in touch- this mama lives near you and had a reflux baby!!
this is also what I’ve found:
All over the state
Breastfeeding Support
Breastfeeding support groups all over the state. Monthly meetings and periodic playgroups. Free and open to all pregnant women and breastfeeding mothers (and babies, of course). Most (maybe all?) group leaders are experienced with babywearing and eager to help you learn.
La Leche League
http://lalecheleague.org/Web/SouthCarolina.html
Goose Creek
Babywearing Help — Free
I have a variety of carriers and am willing to demonstrate how to use each to whoever asks. I am a member of FamilyPlayTimeSC and we get together for group demonstrations routiney but will also meet one on one.
Kelly Stromberg
gool0005@yahoo.com
http://groups.yahoo.com/group/FamilyPlaytimeSC/
Irmo
Babywearing Help – Free
Babywearing Advocate
Brandi Durocher
Phone: 803-407-4157
poohg@aol.com
hellbennt2006-5-1 21:27:42
AnonymousInactive
The chart for Prevacid says Pediatric Dosing for Lansoprazole (the actual drug name for Prevacid). For a three month old weighing 12 lbs they reccommend 8 – 9.5 mg / 3 x’s daily.
Is she getting the full 15mg packet twice per day now? It would probably work much better to give it to her three times per day. It looks like you have enough to give her the proper dose, but giving it twice a day is not as effective as giving it three times. You can email Joel and he can probably tell you how to make three doses out of the two packets. (I use the solutabs, so I don’t have any experience with the packets, but I’m sure it can be done). Here’s Joel’s email andrewsjj@health.missouri.edu
As for nursing, I’ve always been told that babies who are offered both breast and bottle will usually develop a preference for the bottle because it’s easier…they don’t have to work as hard to get the milk. I’d nurse her as much as possible if you want her nursing rather than bottle feeding. Also, your milk supply will diminish rapidly if she is not nursing frequently. Are you pumping? You have to pump a lot more than a baby feeds in order to keep an adequate supply. It’s a lot of work. I had to do it for all three of my babies because I couldn’t nurse them due to various problems including poor latching, and reflux. Reflux babies can nurse – I just didn’t have the information or help available to keep nursing. I wish I had known then what I know now.
How long has she been on prevacid? It takes about two weeks for the full effect.
I hope things get better for you soon.
AnonymousInactive
I recently started Henry on probiotics. However, since we have started he has had runny stools. This could also be due to the fact he has a small cold. Did anyone notice a change in stool when starting probiotics?
Ruby
Henry, 5 months old, reflux
Breastfeeding on the eat-nothing-that-you-like-diet and Nutramigen
7.5 mg prevacid 2x a day
AnonymousInactive
Hi, my dd was so mspi that i couldn’t continue breastfeeding, even after an extensive elimination diet. But go figure… i’m mspi too! I did hire a lactation consultant that came to my home and charged an hourly rate. I did get the insurance co. to reimburse me. She was very helpful. I got her number from the hospital where I delivered.
DD had horrible gas pains and cramping. I would push on her tummy to get the gas out. It bugged her around 20 – 45 mins after eating. The gi doc tested for blood in her stool with a quick swap test in his office and confirmed it. She also had muccousy stools.
Also we did baby massage, following the path of the large intestine. It helped a bunch!
AnonymousInactive
The Kellymom website that Laura gave the link for has a forum where you can ask questions and lactation specialists will answer. They are very quick.
Also from that site you can search for leaders in your area. I found e-mail addresses for the LLL leaders in my area and although I couldn’t get to a meeting, I e-mailed them my questions. They also had phone numbers which would have been quicker but e-mail is easier for me at this point. They were very willing to help.
I have a little guy that has had a lot of problems with gas as well and I also wondered whether it was from let down issues or allergies. I guess I’m really not sure but I know that for us the gas problems went away when I figured out what was causing him allergy problems and eliminated them from my diet. He was very difficult to burp as well.
I have heard that aloe vera is not appropriate for young infants but don’t really know who you could ask to be certain. I guess, once again, that Kellymom site has good pages on what is safe to take during breastfeeding and it also includes herbs and natural things. I don’t know whether aloe vera would be there or not.
massaging his little tummy in a clockwise motion is supposed to be helpful as well. I don’t know if this helped us or not but the benefits of infant massage are great so it can’t hurt.
AnonymousInactive
None of my babies were on a very predictable schedule at that age. That didn’t happen until they were sleeping through the night consistently. Once they are doing that, then they typically will wake up around the same time, and and so then a schedule begins to emerge.
I agree with Laura about making sure she’s on the right medication and the right dose. Is she on a PPI like Prevacid or Zegerid?
If she’s not properly medicated for her reflux, she may be waking frequently because she is in pain from the acid backing up into her esophagus. I remember when I was pregnant how hard it was to get a good night’s sleep because of the hearburn. That’s what these poor reflux babies are experiencing.
As for eating, playing and then sleeping; yeah, I’ve read that, too. But let’s face it, that’s not always feasable. When she gets older that may work to help her learn to go to sleep without feeding, but at her age I wouldn’t worry about that. If you want her to learn to fall asleep without a bottle or breast, you can try feeding her and letting her fall asleep, but when you lay her down, wake her just a little so she is not in a sound sleep, so she gets used to falling to sleep in her bed. That’s what I always did with my babies, and they all have no trouble falling asleep alone in their beds.
I still feed my 7 month old before his afternoon nap and before bedtime. I fed my girls before bed and naps until they were off the bottle at around 18 months of age, and they still learned to sleep fine.
Here’s a link where you can check on medications for reflux to see if your baby is getting the right dose for her age and weight. http://www.marci-kids.com/
Good luck and welcome to the site.
