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Discussion Starter · #1 ·
Hi Mamas,<br><br>
I just got back from our family doctor and our 14 week old has officially been labeled FTT. He is 10# 3 oz. We finally got the diagnosis of silent reflux, and I'm hoping you can help me sort out my thoughts and concerns about the next couple of weeks. We have to do something quickly (like in the next day or two), he is losing weight at this point and I'm very upset by this all.<br><br><b>His symptoms</b><br>
- Low low weight gain (3 lbs in 14 weeks) and now losing<br>
- Very fussy (more so earlier). Screamed for weeks.<br>
- Chronic Coughing<br>
- Apnea episodes<br>
- Wakes up screaming constantly<br>
- Fusses while eating<br>
- Will only take 2 or so ounces at a time<br>
- Eating all the time (10 - 12 times in the daytime), but not taking much.<br><br><b>Diagnosis Questions</b><br>
I agree with the silent reflux diagnosis, but I'm wondering why that would cause him to eat so little. Do you think he just associates pain with eating, so he doesn't eat very much? I'm not concerned that it is my milk supply, I always have tons of milk and even with a bottle he won't take more than 2 oz. at a time. When he was first born he would gorge, and then scream. These days he just doesn't eat. And, recently he has tried to up his eating (or I am trying to get more and more milk in him) and he gets fussier and has more tramatic night and nap wakings. So I get the diagnosis, just not why without the throwing up would he not be gaining any weight. He also pees 8 - 10 times a day and has 3 - 5 small poops (we EC so I get a first hand view <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> )<br><br><b>Dr's Proposal</b><br>
He wants me to pump full time, then add rice cereal and flax seed oil to the EBM and bottle feed for at least two weeks. He thinks we can better track what is going in, and up his weight gain by thickening the milk. I don't know what happens after that.<br><br><br><b>Why I'm not Okay with This</b><br>
First, I'm afraid it will end our BFing if he likes the bottle and he may not come back. Second, I HATE PUMPING. Esp like this - full time. Blech. I'm willing to do it on a trial basis, but I'm scared (and confused). I'm thinking about doing 2/3rds of the feeding via bottle and the rest at the breast. Thoughts?<br><br><b>My Questions for Y'all</b><br>
- Do you agree with the diagnosis?<br>
- Why would reflux cause him not to gain weight?<br>
- What do you know about adding the rice cereal & flax seed?<br>
- How should I navigate the pumping thing? How often?<br>
- Should I just propose medication and forget this whole pumping circus?<br><br>
Just feeling terrible about the last 3 months...like maybe we should have caught this sooner, maybe it isn't even the right diagnosis, we have done permanent damage, poor guy has been in pain this whole time, etc. etc.<br><br>
TIA for any guidence.<br><br>
rachel
 

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I am not a dr or anything but a fews things i thought of when reading your post<br>
could he all ready be nipple confuzed, that is why he is fussy ect, during bfing<br>
possably could not be reflux but allergies or sesitivaty to what you are eating?<br>
is he toungue tied ( short frenulum?) that can cause frustration while feeding at bottle and especally breast. and low weight gain.<br><br>
I would look in his mouth and see if his toungue is short, or the frenulum is attached very close to the tip of his toungue.<br>
then start an elimation diet.<br>
and cup feed, or get your hands on an sns or lact taid(sp) and don't do bottles anymore.<br><br>
I hope you get to the bottom of this. I would be wary of giving rice cearal to a baby. it is nutritioanl inferiour to breast milk. babys little stomach can not get the nutrition out of the cereal. yes he may gain weight on it but it would be empty callories nutrition wise.<br><br>
sorry but spelling is not my strong point.<br>
let us know how you are doing. the best thing to do is go with your heart as a mom.<br>
oh one more thing, is your dr bfing friendly? he dosen't sound like it to me<br><br><br>
Elizabeth
 

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Oh Rachel, I'm sorry you're dealing with this.<br><br>
First off, what constitutes FTT? 3 pounds in 14 weeks is an average gain of 3.4 oz per week. Low, but not that low (since I believe recommendations are 4-8 oz per week?) Is the 3 pounds from birth weight or from his lowest (they tend to drop a few %)? Has it been the same scale each time?<br><br>
I don't have much experience with your other questions, but if this comes down to a problem of low supply, pumping is just going to make that worse.
 

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Don't kick yourself for something you didn't know!! Just educate yourself, make your choices and move on.<br><br>
I don't know a lot about reflux, but I know they want to thicken his food because it will stay in his stomach better. You could just give him a spoon or two of rice cereal during nursing, maybe?<br><br>
You baby is eating small frequent meals because that helps the symptom some. He may not be gaining weight because he isn't getting enough hind milk (a guess). Is his poop green and frothy? That is a sign of too much foremilk.<br><br>
I would prefer medication instead of pumping and bottling. Pumping is extremely exhausting, long term. Especially if it is for all of your baby's food. Their are benefits though, you won't have to pump at night if you can get enough during the day.
 

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Discussion Starter · #5 ·
Thanks for the responses - I thought of some more to add:<br><br>
- I've been dairy free since he was born<br>
- His FTT status is based on his dropping on the charts (he was initially gaining, but then started stopping, now losing). He has gone from the 40th down to the 3rd.<br>
- Dr is BF friendly, but I think like all doctors, when things are looking "dire" then suddenly anything is an option
 

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<div>Originally Posted by <strong>starparticle</strong></div>
<div style="font-style:italic;"><b>My Questions for Y'all</b><br>
- Do you agree with the diagnosis?<br>
- Why would reflux cause him not to gain weight?<br>
- What do you know about adding the rice cereal & flax seed?<br>
- How should I navigate the pumping thing? How often?<br>
- Should I just propose medication and forget this whole pumping circus?<br><br>
Just feeling terrible about the last 3 months...like maybe we should have caught this sooner, maybe it isn't even the right diagnosis, we have done permanent damage, poor guy has been in pain this whole time, etc. etc.</div>
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First off, Rachel, <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I totally understand the mommy guilt; both of my kids have been dxed FTT at one point in their lives (well, my son still is) and both times I felt that guilt for not noticing, worrying about permanent damage.<br>
I'm not a dr, but I would agree with the diagnosis, based on the symptoms you list. My son has other confounding factors (a heart defect) but we're pretty sure it's the reflux that is the main problem now. The fussiness and the taking small amounts frequently are VERY familar. I admit that I'm not sure why reflux causes slow weight gain, in the absence of spitting, especially as it sounds like your son is probably taking an adequate amount of milk overall. The pp might be right about the foremilk/hindmilk thing--if he doesn't nurse long enough each time he won't get hindmilk.<br>
As for supplementation, I would definitely say go for the SNS if possible. I admit I've never used one, but if you can keep him on the breast, you'll be ahead. Not sure about rice cereal. I've seen research (on Kellymom.com) that indicates that thickening feeds doesn't really help much. The flax oil will help boost the calories, which can help when the baby needs to do "catch up" growth, and may be better than traditional fortifying with fomula powder.<br>
If you do decide to pump, I would suggest starting with 8 times a day, about every three hours, although you could probably stretch it out a bit overnight and then clump a bit in the morning or evening. And see how much you get. Once you are getting as much as/more than you need, you can try dropping a session. However, middle of the night is not a good idea to drop, because of prolactin levels being highest then, so it can hurt your supply if you don't get some stimulation in between 1 and 5 am.<br>
Medication may help, and may become necessary later anyway. And as you say, regardless of the method of supplementation, he may not take more than 2 oz at a time, period. Getting him more comfortable with medication, <i>may</i> help with that. But might not--it didn't help my son.<br>
Hope this novel helps and isn't just more confusing. Reflux stinks, big time.
 

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My daughter was diagnosed with FTT just a few weeks after birth. She was 6 lbs. 3 oz. at birth, got down to 5 lbs. even and was very lethargic. As a matter of fact, on my worst day, 3 LLL Leaders and a doula all suggested supplementing with (sadly) formula.<br><br>
At first, off and on, we used both an SNS and occasionally bottles and finger-feeding. When she was about 3 months I felt like she was developing nipple-confusion (actually nipple preference) so I laid down the law - NO ARTIFICIAL NIPPLES....NONE NONE NONE!!!<br><br>
Since that day it's been an SNS at the breast. My supply is still low and only very rarely am I able to get her to nurse w/o the SNS, but I've kept her at the breast for every feeding.<br><br>
If you feel like it's your supply you may want to try domperidone, reglan, fenugreek, or other herbs and drink mother's milk tea, and eat oatmeal.<br><br>
Honestly, I haven't had time to read the other posts, but really, try to get your hands on a lact-aid system or SNS. It will do wonders!
 

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<div>Originally Posted by <strong>starparticle</strong></div>
<div style="font-style:italic;">- His FTT status is based on his dropping on the charts (he was initially gaining, but then started stopping, now losing). He has gone from the 40th down to the 3rd.</div>
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Dropping in the charts is not, in and of itself, an issue.<br><br>
Did you have an IV at birth? Is there any way his birth weight was artificially inflated. As another poster asked is that weight gain from his birth weight or his LOWEST weight. How many weeks has it been since his lowest weight.<br><br>
If you do not want to bottle feed, I would consider an SNS. That way you could more closely monitor how much he was taking in (you could pump then nurse with the SNS) plus add the flax oil, etc...<br><br>
My main question is, "How do you feel?" Do you feel like there is something actually wrong, or that your baby is just not growing like "average."<br><br>
How is your baby's head growth? How is his skin tone? Hair? Fingernails?<br><br>
Also, I don't think *only* two ounces is bad at all. At that age many kids DO nurse 20-30 times in a 24 hour period--- they just don't get much at any one time. Our society is used to stretching those tiny tummies out to fit in 6-8 ounces right away, but realistically, it is healthier to be taking in only about 1.5-3 ounces per feeding.<br><br>
If he has been diagnosed with reflux will he be medicated?<br><br>
I really encourage you to also post this question on the Special Needs board because there are several moms there who have children w/major eating issues who may have some good advice.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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This doesn't seem right to me at all. Have you seen a LC or two? This sounds like my first (except without the low weight - he was VERY heavy). Turns out he was getting too much foremilk AND was reacting to dairy in my diet. My second didn't gain quite as much as yours is now. Between 2 and 6 months, she gained 3 lbs and 2 oz. Now she didn't have the other problems but she is a happy, active walking, talking little 10 month old.<br><br>
When you have the low weight gain plus the problems eating, that must be very hard for you. I am sorry and hope that you find a solution soon. It just seems to me that the solution your ped is suggesting wouldn't work. If there was a chance that my baby were aspirating, the last thing I'd want to put in there is rice. I won't comment on the diagnosis itself. There does seem to be other possibilities though that may well have been ruled out ...or maybe not.<br><br>
Like I said this all sounds funny. Did he even suggest that YOU take the flaxseed oil first? I would get another opinion.
 

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<div>Originally Posted by <strong>starparticle</strong></div>
<div style="font-style:italic;"><br><b>His symptoms</b><br>
- Low low weight gain (3 lbs in 14 weeks) and now losing<br>
- Very fussy (more so earlier). Screamed for weeks.<br>
- Chronic Coughing<br>
- Apnea episodes<br>
- Wakes up screaming constantly<br>
- Fusses while eating<br>
- Will only take 2 or so ounces at a time<br>
- Eating all the time (10 - 12 times in the daytime), but not taking much.</div>
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I agree with the diagnosis. The little boy next to my Sara in the NICU(born at 34 weeks) suffered from VERY bad reflux so I learned pretty fast by sitting there constantly for 11 days nursing and kangarooing and listening to the docs and nurses. The coughing is probably due to the irritation in his esophagus from milk and stomach acids refluxing up so frequently. The apnea is related to the large amt of reflux coming up fast and causing him to hold his breath to keep from aspirating it(have you thought of requesting an apnea monitor? it's a giant pain in the butt but it's a huge comfort, especially at night. Sara was on one for the first 4 months of her life and had some SERIOUS episodes in deep dream sleep and in her car seat in the car that I needed to stimulate her to keep breathing). The small, frequent feeds are probably his way of compensating. Small frequent feeds are easier to keep down because the stomach doesn't stretch as much to accomodate a bigger feed and basic anatomy tells us that the GI tract is made of smooth muscle which contracts against stretch. Therefore, bigger feeds cause the muscles to stretch and the stomach contracts against that stretch and forces the feed back up the esophagus. Your little guy has already learned this from his early days of gorging and purging. The fussing while feeding might be him refluxing from laying down(cradle position???) or it might be a psychological reaction to eating and knowing that he'll reflux soon and it's pretty painful. The waking up screaming is probably that he lays flat to sleep and refluxes and wakes from the pain. Have you tried laying him on a semi-reclined surface like a car seat or upright against your chest in the sling? Sara had some reflux issues when she was smaller and LIVED in her sling. She nursed and slept in the sling so that she would stay upright and reflux less.<br>
Serious reflux can be a big big issue. I know a lot of people that pumped and added cereal to weight the feed in the stomach and help the baby keep it down. I know a lot of other people who nursed, gave baby meds and did lifestyle changes like bland diet for mom, upright positioning for baby, and lots of short, frequent nursings. You need to pick what works for you. But small things like the lifestyle changes that I mentioned can't hurt and can only help you and your new son. I think the diagnosis is right on and hopefully this puts you on the road to a healthier baby.<br><br><br>
Meg
 

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Discussion Starter · #11 ·
Thank you everyone for the detailed responses. Since I've posted I laid out a plan in my head and will stick to it for a couple of weeks. Here is where we are at:<br><br>
- I declined the cereal for all the reasons listed on kellymom (allergies, doesn't work, etc). My Dr. was fine with that (even apologized for not realizing it wouldn't thicken breastmilk).<br>
- We are going to try medication instead<br>
- I'm going to pump after each feed and try to get him to take the extra fortified with flax seed oil for extra calories (and to make sure he is getting hind milk).<br>
- I'm going to increase my supply with Fenugreek & Extra Pumping<br>
- Feeds are now upright<br>
- He lives in his sling already, but we'll be sure to keep him upright<br>
- Lots of comfort nursing & stop swaddling at night to encourage a more positive association with nursing<br><br><br>
If these things don't improve his fussing & weight we'll reevaluate.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/rocks.jpg" style="border:0px solid;" title="mdc rocks">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
It sounds like you have a plan that will work. Good luck and keep us posted. If he really does associate feeding with pain, you may be able to get some kind of therapy, but I'm not sure if they do it that young. Hopefully the mediation will get his acid down and he will learn that feeding doesn't have to hurt.
 

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Rachel, you sound much more positive! I'm glad to hear it. Also, you really sound like you did your homework and this is something you can live with as a viable option. I hope this works for you and your son. Reflux is no fun.<br><br><br>
Meg
 

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I have had similar sleep problems with my son. He went through a stage where he wasn't gaining any weight. I started to nurse him on one side repeatedly so he would get more hindmilk. Also, I had to purposely relax to let down, I was anxious and then he got anxious becuse nothing was coming out. I would close my eyes and meditate while nursing. I would even imagine flowing rivers of milk! Whenever I thought I had low milk supply, I had to turn to positive thoughts. His poops changed from green to orange but he still woke often, so I cut out dairy (beware of hidden dairy). He has been much better, but still waking often. On Monday I took him to a clinic to have an MSA test (an allergy test) and found out he is not only sensitive to dairy but even more sensitive to white flour and gluten. I researched this and it seems that this is the second most common cause of silent reflux next to dairy, see this website: <a href="http://www.cryingoverspiltmilk.co.nz/Food/Glutencancausegastro-oesophagealrefluxdisease!.htm" target="_blank">http://www.cryingoverspiltmilk.co.nz...uxdisease!.htm</a>.<br><br>
So now I have started to change my diet in this respect. I know that each mother is different, so I encourage you to trust yourself and your instincts.<br><br>
Maegan (mother to Malena (5-15-03) and Henry (8-26-05))
 

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I have not read the other responses and I am about to go to bed. but it sounds very much like your baby could have serious reflux issues. The apnea and coughing especially point to this, but also the failure to eat much at a time. Has he ever had any studies done? Gastric empty study for example? Please see my sig link for more info on severe infant reflux. I have a link to Kellymom's page on it which is excellent, on my page "How to Help". Please watch my videos of my baby in the photos section and see if your baby is acting the same way as mine for feedings (back arching, etc). That is classic reflux.<br><br>
If you want to make sure he's getting enough to eat over the course of a day, rent a baby scale and weigh him before and after every feeding. If he's eating enough then there's something else going on. If he's not eating enough then it's probably a feeding aversion due to reflux, and there are things you can do to help.<br><br>
((HUGS)) Feel free to PM me if you need to talk, or I'll check back here later.
 

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Discussion Starter · #16 ·
wow USAmama - I just broke into tears looking at your photos...it could be Leif. He has the concerned look all the time (check out this photo: <a href="http://www.starparticle.com/pics/baby/skinny.jpg" target="_blank">http://www.starparticle.com/pics/baby/skinny.jpg</a> ) - does the sideways arching CONSTANTLY while eating (latch on, latch off, stretch to the left, repeat for 5 minutes before eating) - arching his whole body - only chubby cheeks left (his ribs stick out), etc. etc. etc.<br><br>
I hope the medication will help him grow ASAP. Plus all the mamma's milk + kisses. I'm nervous he still won't eat since all my measures over the past month haven't helped yet.<br><br>
Thanks everyone!
 

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I don't have time to post in great detail, but my now 3-year-old stopped gaining at 2 months. At 7 months, he weighed within an ounce of his 2-month weight. At 12 months, he was just over 13 pounds. Just wanted to say that your plan sounds great! Keep in mind that reflux and malabsorption can be caused by food allergies and any food can be a problem. The most common allergens are dairy (and like someone said, hidden dairy can be tricky), soy, eggs, nuts, peanuts, wheat, and fish/shellfish. Corn is also fairly common but not included in the top eight. Even formulas like alimentum still contain intact proteins.<br><br>
I love your dedication and determination. This is a great place to get the support that you need to get through this!<br><br>
Missy
 

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<div>Originally Posted by <strong>USAmma</strong></div>
<div style="font-style:italic;">I have not read the other responses and I am about to go to bed. but it sounds very much like your baby could have serious reflux issues. The apnea and coughing especially point to this, but also the failure to eat much at a time. Has he ever had any studies done? Gastric empty study for example? Please see my sig link for more info on severe infant reflux. I have a link to Kellymom's page on it which is excellent, on my page "How to Help". Please watch my videos of my baby in the photos section and see if your baby is acting the same way as mine for feedings (back arching, etc). That is classic reflux.<br><br>
If you want to make sure he's getting enough to eat over the course of a day, rent a baby scale and weigh him before and after every feeding. If he's eating enough then there's something else going on. If he's not eating enough then it's probably a feeding aversion due to reflux, and there are things you can do to help.<br><br>
((HUGS)) Feel free to PM me if you need to talk, or I'll check back here later.</div>
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Thank you so much for responding! I was looking for you because I know you have experience w/true FTT and severe reflux.
 

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<div>Originally Posted by <strong>starparticle</strong></div>
<div style="font-style:italic;">wow USAmama - I just broke into tears looking at your photos...it could be Leif. He has the concerned look all the time (check out this photo: <a href="http://www.starparticle.com/pics/baby/skinny.jpg" target="_blank">http://www.starparticle.com/pics/baby/skinny.jpg</a> ) - does the sideways arching CONSTANTLY while eating (latch on, latch off, stretch to the left, repeat for 5 minutes before eating) - arching his whole body - only chubby cheeks left (his ribs stick out), etc. etc. etc.<br><br>
I hope the medication will help him grow ASAP. Plus all the mamma's milk + kisses. I'm nervous he still won't eat since all my measures over the past month haven't helped yet.<br><br>
Thanks everyone!</div>
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Wow Leif is adorable!! He looks like a very wise soul and huge eyes!<br><br>
What meds is he on? My dd did not do well on Zantac or Tagament. We had to get out the big guns with her: Prilosec. It made a huge difference to her. It was too late for the feeding but her mood improved, she relaxed, she started to develop again and come out of her shell.<br><br>
We also moved her to a lactose-free, hypoallergenic formula. She turned out to be lactose intolerant so an elim diet may not have been that effective for her. Since you are an experienced and committed nursing mom I hope that you can do this for him just to rule out any allergies. Although it sounds like from the apnea and choking that it's true reflux. That's an immature nervous system/digestive sytem, but it can be made worse with foods that hard hard to digest. Maybe even if you know he doesn't have issues with foods, maybe eliminate the ones that are hardest to tolerate like dairy, spicy foods, and ones that cause gas. Breastmilk is the easiest to digest for most babies, so you don't want anyone suggesting formula supplements unless you have a milk production problem or something, which you probably don't. Breastmilk moves through the system more easily than any formula. The second best is the hypo formula Nitara is on. With reflux babies you want the stomach to empty as fast as possible, not work so hard to digest formula (which takes more calories away from FTT babies, BTW, to digest that stuff).<br><br>
Reflux is so frustrating and hard! I did not bf either of my girls (not for lack of trying with dd1) and I just cannot imagine the difficulty of trying to nurse a baby who unlatches all the time and doesn't want to eat. It must be so emotionally hard, like he's rejecting you. ((HUGS)) At least that's how I felt and I was not even nursing.<br><br>
If you have not read that book <span style="text-decoration:underline;">Happiest Baby On the Block<br></span> I would recommend it. It has some great calming techniques that are good for the little refluxers. Nothing will cure it except time, but you can at least try to cope as best you can. I would also encourage you, if you want to, to contact Early Intervention and see if they can set you up with an occupational therapist to help with sensory issues. Most refluxers have sensory issues (if he's doing the back arching stuff he almost certainly does) and there are things you can do to help calm his nerves so he won't reflux as much. Things like brush therapy and special joint compression massage. Even normal baby massage will help some. You can get EI contact info by calling your local public school and getting the number, or ask the ped. OT really helped Nitara with many of her issues like sleeping, calming down, and tolerating noises and strange people. She used to freak out so bad.<br><br>
Also, try to rule out diaphragmatic hernia if you haven't already. It's not uncommon in babies, and while it's not horribly serious, it can cause reflux or make it worse. Basically, part of the stomach gets trapped up above the diaphragm so the stomach is squashed and can't work properly.<br><br>
Please do feel free to email me or PM me. My email is at the bottom of the reflux website.
 
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