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Dec 13, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
new mom here -need support!!!
Hi everyone, I'm Sara, Mommy to Stephen, born 3 wks. early. He has GERD and has since he started taking bottles. He wouldn't/couldn't breastfeed (I literally tried everything aside from standing on my head to make it work). I pumped and fed him BM and eliminated everything from my diet possible to see if that helped the reflux, and b/c of eating so little, my supply ran out. We started him on soy formula, and he seemed to do okay with that for about a week, then began vomiting again. He constantly chockes and gags, even sometimes when I just offer him a bottle, he gags and throws up. One day it got so bad when he choked that he almost stopped breathing (it came through his nose) and I took him to the hospital. I was crying hysterically after he had not kept anything down. We were referred to a Ped. GI specialist who put him on Neocate and he is currently on that as well as Zantac. We tried Prevacid first but affected his urine output, so we went to Zantac (which I'm not sure is doing anything). Honestly, the GI doc. is a jerk and thinks I'm a mother who is nuts because my son is gaining weight and isn't dehydrated. But the only way he keeps anything down is if I load his bottles with rice cereal (which the doc told me not to do). There aren't any other GI docs. for miles around, so this is the only option. The Neocate with RC seems to be better than anything so far, but it is a constant struggle. He also fights the bottle constantly, like he knows it might hurt him to drink. The gagging is horrible, and I have to distract him to get him to eat at all. He takes 4 oz. every 3 hrs or so, but sometimes less, and sometimes he throws up half of that. Also he will sleep for hours at night and skip a feeding. He only has about 6-7 wet diapers a day, but the doctor says he is fine. I am exhausted and constantly in tears. I don't know how to help him and I feel like nobody cares. I'm SO disgustingly sick of people saying "he's fine," "stop worrying," "he'll grow out of it" that I could scream. I just need support from people who understand and who can tell me there is hope. I love my son with all my heart and want him to be well. Also, any advice you have is appreciated. What can I do about the gagging and fighting the bottles? Do you think he is getting enough to eat? The most he has ever taken was 27 oz. in a 24-hr. period. I would give anything for this to go away and for him to be no longer miserable!!! Thank you in advance. Hoping to make some friends, Sara
Dec 13, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Hey Sara! I am so sorry to hear that you are having such a terrible time. You have found the right place. I have never heard of Prevacid affecting urine output. Can you tell me more about that and why you thought it was the Prevacid. Do you think it is worth a try to put her on Elecare? I know it is super expensive but it might be your answer. Do you have an allergist in town or a really effective pediatrician?
Dec 14, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Welcome, and I'm sorry life has brought you here....

I want to first encourage you to trust your intuition. If your mama gut tells you something is wrong, the odds are very good, IMO, that you are right. Although that may not translate into finding answers as soon as you might like, it may help you feel more sane and more confident to know that NO ONE KNOWS YOUR BABY BETTER THAN YOU DO, and no one else has the kind of biological imperative to assure your baby's well being.

Has anyone talked with you about sensory processing issue in babies who are born before term? It is very common, and the gagging and aversion you describe, as well as the inability to breastfeed just trigger a hunch about it for me.

Dec 14, 2010
dcd
Hi Sara. You're not alone and you're not crazy. And you know your son. We've all been where you're at now (I still am!) and we understand. Just my two cents, I don't have much faith in Zantac for reflux. It is an H2 Blocker and may help a little initially, but the body can develop a tolerance to it and it will stop working. You can research this yourself. PPIs are generally considered much more effective for reflux. (They completely shut down the system that produces acid.) They won't stop the vomiting, but they will reduce the acid in the vomit which will protect the esophagus and manage the pain. Once the acid is controlled, chances are good that your son might stop fighting the bottle so much...right now it sounds like he's figured out that eating = acid reflux pain.

I also have never heard of Prevacid affecting urine output, can you tell us more about that? Keep in mind though that there are other PPIs you could try.

I don't have experience with Elecare, only Neocate. But they're both elemental (amino acid-based) formulas and should be equally gentle on the digestive tract. If you think your son might have a milk or soy protein sensitivity, be careful with the brand of rice cereal you use - most are cross contaminated with milk/soy and very sensitive babies can react to even that trace amount of the allergen. I've read that Gerber is almost always cross contaminated. Earth's Best and Beechnut are supposed to be "safe" but the moms on the Kids With Food Allergies board I'm on are suspicious of Earth's Best (the company is supposedly very tight-lipped about their processes for preventing cross contamination.) Just something to keep in mind as you thicken your bottles.

If it were me, I would focus on getting the acid under control first. Learn all you can about PPIs and and how they work. Also look into sensory processing possibilities like LorenzoMama says, as well as MSPI (milk soy protein intolerance). Learn all you can because it will empower you to make the right decisions for your baby.

We all know what it's like to work with "jerk" doctors - my daughter never lost weight or got dehydrated either. I was unprepared as a new mom for the responsiblities of completely taking over and managing my daughter's health issues - I kept thinking this is what I pay the doctors for! I'm not equipped to do this! But ultimately, it IS up to me. I feel like a lot of doctors let me down before I found the right partners. You will become an expert in reflux and in fighting for your son's health. Try to ignore those that don't understand, because they never will. Use this forum as a resource and lean on those that love you. Good luck!

Dec 14, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
Thanks for the warm welcome! Okay, decided to tell the Ped. GI to "kiss my patoot" after he said I was over-reacting and needed anti-depressents and baby boy is fine because he's gaining weight!!! Talked to his regular Ped. today, who is great (and said even unhealthy babies in Africa gain weight and grow!) and we are going to try a new medicine which is waiting for approval by the FDA (apparently Zantac is the only one approved). It is approved for kids age 12 and up, and has shown to work in many infants already. Its called AcipHex (Rabeprazole, PPI). Does anyone know anything about it?? The doc. says he really thinks it might help. It was actually my father who thinks the Prevacid affected his urine. He is a medicinal chemist (and very helpful)! Right after he started taking it, his output decreased (though he was eating the same amount) and it caused the urine to have a weird color/smell. He wasn't taking any other meds at that time, so my dad said it could be a side effect of Prevacid that isn't well-known. Also, another question. Baby boy eats around 4 oz. every 3-4 hours and sometimes falls asleep before he finishes a whole bottle (often only takes 3-3 1/2). Then he wakes up 20 mins later trying to eat his hands, his toys, his blankie, etc... But then if I offer another bottle, he won't take it! Do you think he is still hungry, or is he just playing? He will get fussy too. Could that just be the reflux? Teething maybe? I don't know what to think.
Dec 14, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
Oh, and I am using Happy Bellies Rice Cereal. It has no dairy, no soy, no gluten, and no wheat! It works great.
Dec 15, 2010
tinytanner
Welcome! I think your choice to fire your Pedi GI was right on. Your reg Pedi is right sick children in Africa do still gain weight and grow! Happy Bellies is the cereal brand that I also have found to be the best. I wouldn't worry to much about is intake. At four months when my little guys reflux and MSPI got really bad and Zantac stopped working he was only taking in maybe 14-20oz at the very most and that was total dream feeding. If he's getting more then that at least you don't have to worry about dehydration. Right now don't worry about anything but keeping him hydrated and getting on a medication to control that reflux. Also I think it is worth a shot at trying a different formula. You can start with Alimentum or Nutramigen first and see what happens. Only take one step at a time so you can be sure when something works you know what it is that is working and always allow at least 2 weeks to know if something is working or not. I know it's really hard (even that is an understatement) to take it one step at a time but you will get through this. We are all here to listen, we all have been there and kinda always will as there are things that can cause flare ups so we can all fight this fight together! Keep your head up, your not crazy, that Pedi GI is crazy! =)
Dec 15, 2010
dcd
If he's on Neocate I wouldn't try Nutramigen or Alimentum because that would be like a step backwards - the Neocate is completely broken down whereas Nutra/Ali are only partially broken down. Elemental formulas like Neocate/Elecare are going to be the easiest on the GI tract - they require almost no digestion b/c the proteins are already broken down.

I do think the main thing is to focus on getting that acid under control!

Dec 18, 2010
jlh9s
Sara,

I've been there too and relatively new to this forum.

Our daughter was in the 55 percentile when born. She plummeted to 25 percentile within a few weeks because her reflux was so severe almost immediately after birth that she couldn't eat. I thought I had low supply because she would go off the breast and scream as if she was starving, but I later figured out it was the reflux. She is now 30 percentile in height, which is still not great considering where she started, but 42 percentile in weight and we have had to fight to get her there. Prevacid made a huge difference for us in overcoming feeding aversion and getting her to eat more again.

I'm in your boat too where my pediatrician is somewhat sympathetic because of her screaming/crying/irritability, but he is a generalist and we don't have a pediatric GI near us.

We finally got an appointment with the nearest GI - 4 hours away from us - after waiting five weeks. I went in with a copy of all her medical records, a filled out questionnaire that they had sent, typed up notes on her "protocol" (what we're doing and not doing right now) and a list of questions (about half a page long). The GI looked at us like we were crazy and immediately said to me, "So you must be the lawyer, huh?" I explained that after driving 4 hours and waiting 5 weeks, we wrote down our questions to be sure we didn't forget anything. He still looked at us like we were (I was) nuts.

Long and short is that he said he couldn't answer any of the questions because so much of GI is guesswork because of variability among infants and not being able to communicate with babies. He went on to suggest that a lot of crying/irritability could just be a baby's individual temperament - being sensitive. He also said that babies often pick up cues from parents, particularly ones that were overly anxious. Translation that my husband and I got from this: you're being a worrywart and influencing your baby. I don't know how worrying would cause a baby sleeping soundly in a cradle to suddenly wake up screaming and gagging, but whatever.

GI also said our baby was developing beautifully and he didn't think 55 to 30 percentile was a big deal. I can see where he's coming from given the stories I've read about hospitalization, feeding tubes, etc. But I did think his "standard" for when reflux is an "issue" was pretty limited: (1) if the baby has to be rushed to the emergency room because he/she has stopped breathing, (2) baby is spitting up blood, or (3) baby goes down to 1 percentile or drops off the weight charts. Short of that, his attitude seemed to be "take care of yourselves" and "deal with it." In other words, not very illuminating. He was a nice guy, but I got the very clear impression that unless she was in much worse physical condition, he did not think she had any medical issues worth reviewing.

There's only one other GI in our state. And that one will not even give us an appointment because after reviewing her medical records, she's not enough of an emergency case to merit seeing us compared to their other patients.

So I tried to take the positives out of it. One, we do have a beautiful baby that is not in such bad shape by comparison. Two, she has a relatively mild case of reflux (Lord preserve me if I ever have a child with a severe case). Three, we've done so much dang research that even the GI couldn't answer our remaining questions any more than we could. :)

Like the others said, I would encourage you to look at PPIs again. Prevacid has made a huge difference for us. She still coughs and gags and has many other symptoms, but no more waking up choking and seeming unable to breath (which, btw, did not seem at all significant to this GI since she wasn't hospitalized for it...!). And she is still fussy and goes through bad days but overall eats much better than before it when we went through all out feeding strikes. Good luck - I learned so much more from this forum than any doctors so far.
Dec 20, 2010
dcd
"Three, we've done so much dang research that even the GI couldn't answer our remaining questions any more than we could. :)" Haha! So true. I get the "you're just crazy" reception from most doctors too. Most also seem threatened/turned off the extent of research I've done on my own, and my specific and informed questions. None of which gets us anywhere.
Dec 26, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
not sure what to do now!!!
Hi everyone, Well, alot has changed since I've been on here last. Things started getting worse with Stephen. We switched to Prilosec, which he had an allergic reaction to (started breaking out in hives, we ruled out other things). We took him off of it after a few days, and the hives went away. He was eating a bit better but still throwing up alot. Then it happened. He ended up choking, aspirating and turning blue. I was absolutely terrified. It was in the middle of the night after he had eaten, and I am so beyond thankful I was not asleep because I'm afraid I wouldn't have heard him. I almost took him to the ER but he was okay after I calmed him down, and I didn't sleep the rest of the night. The next day I called the Pediatrician who referred us immediately to a Pediatric GI surgeon. He threw up while at the surgeons office and started choking again. The doc. gave my husband and I 2 options, either to just deal with it and hope/pray he doesn't choke to death, or have surgery to stop the reflux. DH and I prayed long and hard, and we made the decision for him to have the Nissen fundo. surgery. He had the surgery this past week, and since then he has not refluxed at all. Sometimes I can still hear the stuff trying to come up, like his stomach is rejecting it, but it never does. I have been able to lie him flat on his back to change him/play for the first time and not worry about reflux shooting up into his nose. However, now I am struggling to get him to eat again. There are times where he flat out refuses the bottle. I know the surgery made his tummy a bit smaller, and I realize his stomach is a bit smaller. But I can't get him to take more than 2-3 oz. at a time every 3 hours or so. It is a struggle and he hates the bottle right now, though I know he is hungry. He will suck his hand, his tongue, anything else. Yesterday I barely got 22 oz. down him. :( I'm afraid he is not going to grow off of that amount. Has anyone here had experience/know of someone who has had the Nissen surgery? The doctor assures us it will get better and he will be eating again like normal after several weeks to a month. But I am terrified I have made things worse with the surgery. At least before the surgery he was eating more. Do you think I made the right decision? Do you think he will eventually eat more? I have read good and bad about the Nissen surgery and researched it before he had it, and I thought it was the right thing. But of course now I am regretting it and feel so guilty about my baby being that little and having scars (though they are minimal). I don't know what to do. The refluxing is gone but now he hates to eat and I'm worried sick he's not going to eat enough to grow or that it will continue to get worse, rather than better. I am terrified they will put him on a feeding tube if he won't eat.
Dec 26, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
forgot to mention
I forgot to mention that DS also had a HUGE hiatal hernia that they repaired while doing the nissen.
Dec 27, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
So sorry you had to go through all of that. That is really tough. : (

You can't feel bad about your choice or 2nd guess yourself. You made the best decision you could at the time. The decision was made and the surgery is done. No looking back.

Did the doc have you continue with a PPI or did he have you stop? He might still need some for awhile.

Try to be patient. It is going to take time for him to 1. Learn that it is safe to eat, 2. Heal from surgery and 3. Stretch his stomache back out to handle volume. One feeding at a time... slow and steady.

Dec 29, 2010
stephensmommy
Mommy to Stephen Michael, 4 months on Dec. 27th
Diagnosed with GERD, currently on Zantac, Miralax, Gripe Water, and Neocate with Rice Cereal
patience is a virtue!
Thanks VigilantMom...things are getting better!!! He is eating better now and not fighting as much. He is taking a good 3 oz. at a time, and acts like he is actually interested in eating for the first time!! He is still on Zantac, as well as Infant Tylenol and Mylicon and Gripe Water. That combination seems to be working. So far so good with no reflux or choking! He is healing really well and I do think we made the best decision. He is already starting to act like a new baby, much more playful. This morning I let him lie on his back to play and he started to roll a little bit. That is good news since we've been worried about developmental milestones!
Check with your
doctor first!