Help! When does the pain end for the baby? I've been in tears...

[Anonymous]

OP? I hope things are getting better?

[Anonymous]

My heart goes out to you. My daughter had severe reflux and barely breast fed and would not take a bottle. It is such a powerless feeling. Hang in there. Will be praying for you.

[Anonymous]

OP, your family is in our thoughts and prayers. I hope that things turn the corner with eating soon.

[Anonymous]

bumping for OP in case she checks in. I'm awfully worried about her now.

[Anonymous]

OP, pulling for you. Hope you'll come back and update us...i'm sure you're very busy though!

[Anonymous]

Hi, I didn't read all the responses, but the ones I saw seemed very helpful. We were in a similar situation but thankfully without the dehydration which is quite scary and dangerous. Agree with the recommendation to take the dehydration seriously and to call Pat Shelly--she really helped us. Our Prevacid took about a week to start helping for our then-two-month-old. We stopped it when he was seven months. If you get the pill form of Prevacid, you can get the syringes from Target and swirl it around in the syringe until it dissolves. (I mention this because it took us a while to get the hang of using the tablets.) Good luck, and please update us! It does get better...our miserable, crying two month old is now a playful, happy, healthy 1 year old.

[Anonymous]

Anonymous wrote:OP, thanks for the update. You have a huge virtual community pulling for you and your son! We are out of the worst of the reflux now with our almost 1yo, and never faced the tough stuff you have had to deal with since ours was a comfort eater. Still, for me reflux was the hardest thing I've dealt with as a parent, more excruciating and overwhelming than anything else I've seen as a mom to 2 little guys who have seen their fair share of physical and emotional challenges. I realize that there are far worse challenges one can have as a parent, and I do feel a thousand times more sympathetic toward all those parents and kids who have suffered worse. It was just incredibly frustrating to find the most basic act of parenthood - feeding your baby - create pain for the child you love, and incredibly frustrating to realize that the treatment inevitably takes a bit of trial and error to see what works best for the individual baby. It sounds like you've got great medical care, and there are so many of us who have experienced a little bit of what you're dealing with now who will keep you and your family in our thoughts. Good luck.

Well said.

[Anonymous]

OP, how are things?

[Anonymous]

OP here: Thank you all for your concerns. I have not had time to reply but read responses once a day to see if there are any additional advice or words of encouragement offered. Sadly to say, after 7 days at the hospital my baby has not gotten better. His oral intake has been abysmal. Yesterday, he took less than 8 ounces orally. Due to severe reflux, he has developed an acute aversion to feedings (both on the breast as well as bottle). We have tried letting others (nurses, my sister, my husband as well as feeding specialist who feed difficult eaters in the NICU/PICU) feed him but all to no avail. We have tried letting him completely dictate his input and he would rather starve than eat. It amazes me that if given a choice, he would rather go 11 hours without even drinking any milk and when he does finally take something in it was only 2 ounces. He was also removed off of IV because he keeps kicking off the needle. Due to dehydration, it becomes more difficult for them to find a large enough vein. Two nights ago when he kicked off the IV needle for the 3rd time, they sent at least 5 different people to the room to put in his IV and after 2 hours of poking him and "blowing his vein", they had decided to stop. My son cried hysterically for 2 hours during the whole process.

Although I have been on the elimination diet for over a week now, the GI peds finally requested that we supplement with Neocate. Unfortunately, my son refused the taste and so we ended up switching back to breastmilk again. After doing the upper GI endoscopy and biopsy on him, the doc had mentioned to me that if we cannot get at least 2.5 ounces of Neocate into him every 3 hours in the next 2 feeding sessions that my baby would need a feeding tube. Needless to say, I have never felt so helpless and stressed. In those 3 hours, I was praying (begging really) for my son to just drink milk. I sang, made faces at him while pretending to keep a positive attitude so that he would not feel uneasy while trying to eat. Unfortunately, he did not make the numbers and is now on a feeding tube. I cannot tell you how heart broken I was. I have tried to stay optimistic but I cannot tell you how many times I have broken down. Last night, I broke down completely again when the baby became so fidgety that he managed to pull out his feeding tube.

My husband and I have requested to be discharged from the hospital since there was nothing more they could do at this point. My son has had so many tests done on him. With the feeding tube, we are buying a little bit more time to work with the Ped GI to determine what our next steps would be. We are now back on Neocate for the next 5 days. This time, we were given a flavoring (from another Mom with a boy at the hospital) to put into the Neocate to see if DS can handle the taste better. Since there were no further suggestions from the medical professionals, we feel as though we need to figure this out on our own. My husband and I are hoping that it is something in my breastmilk that is the additional culprit to the feeding aversion. We were home this early AM. We offered our son the bottle and he took 0.5 ounces after 4 hours of not eating anything. Even with a husband who is a physician, I feel nothing at this point but a sense of hopelessness. I kept thinking about a mom I had met. She too had a severely reflux child and had told me once that after struggling 2 years with helping her child eat, she broke down in tears the other day when her daughter walked to the pantry to look for some food to eat. I think that if my son were to take 3.5 ounces of milk orally on his own at this moment, I too would fall down on my knees and be overwhelmed with joy.

It has been a very difficult week. I keep pinching myself to see when this nightmare would end and we will once again have the happy baby I took home from the hospital 2 months ago. Please keep praying for us. In the meanwhile, we will be seeking a second opinion from another ped GI. If any parents out there have one that they can suggest, please let me know what his/her name is. Hopefully, the wait to get an appointment won't take too long.

[Anonymous]

Your post just makes me want to cry - I am so sorry you are going through this. I too had a baby who would not eat. She did ok until about 6 weeks old then the wheels fell off. Screamed, cried, arched back, refused feeds, developed oral aversions, the whole nine yards. She too ended up on Neocate. We were never admitted to the hospital but probably should have been. Many, many days 10 ounces was all we could get in through HOURS of trying. Some things I've learned as she's gotten older:

-she has low muscle tone and learning to eat has been really difficult for her, no one ever diagnosed a problem with suck/swallow but it became very apparent when we started solids - the food just literally fell out of her mouth and she didn't know how process it
-she never had a problem sleeping on her back so I always wondered if it really was reflux, she was on every medication under the sun including Zegrid and nothing helped
-she had a lot of sensory issues including being a very disorganized eater, we had to swaddle her tightly and feed her in a quiet dark room for her to be able to concentrate enough to eat a few ounces
-2 endoscopies at 4 months and 3 years showed no damage at all, again leading me to wonder if it was reflux
-she had difficulty with swallowing, we thickened her feeds with Simply Thick and it helped, again never diagnosed but I always thought we should have had a swallow study done
-she didn't really start eating better until she started daycare at 4 months, sadly she just associated me with feeding pain, she did better once it was someone else feeding her (but don't be too discouraged as this certainly didn't last forever)
-by 12 months she was able to drink from the bottle like a champ

I guess I just want to make you aware that if a baby doesn't eat I think a lot of doctors assume it's reflux. Most of the time it probably is, but unless you have a DEFINITE diagnosis through endoscopy I wouldn't rule out other causes. Some genetic disorders make feeding difficult as well, and as I said before so does a swallowing disorder. I totally understand how stressful and panicky you feel, that's why I'm so affected by your post. As all the other posters have said, you have a large group of people rooting for you.

I've heard the feeding clinic at Johns Hopkins is excellent: http://www.hopkinschildrens.org/tpl_rlinks_nav1up.aspx?id=2734
If I were you I would have my pediatrician call them asap to get your child in. There's usually a long wait but if the ped lets them know it's a critical case you can probably get in sooner.

Now for the good news: it's been a long road but now my DD who is four years old eats really well. She is a tiny peanut at 25 lbs but is happy, smart, and independently eating all her meals. You will get there too!!! Please stay strong and know that you are not alone in this journey.

[Anonymous]

OP, I'm so sorry that your child is so sick. I will pass along the info for our ped GI, whom we've liked very much. Dr. Angieszka Pluta, affiliated with both Capital Medical Group and Childrens Hospital - tel [phone]; messages 301-706-6998. She is kind and straightforward and got us on a treatment regimen that worked after we'd had little success with what the peds advised.

FWIW, I also know someone whose child was admitted to the Johns Hopkins program and had good results, although it was a young toddler, not an infant like yours. I'll keep your whole family in my thoughts and prayers and hope that your little one begins to improve very soon.

[Anonymous]

OP, I am nearly in tears reading your post! I will continue to pray for your baby and your family every day.

[Anonymous]

OP- I've been thinking about you all week. I just did some googling for you. A few things:

1. Apparently Neocate might taste better if warmed up a bit beyond room temperature. We used to warm our DD formula in a microwaveable mug and then transfer it to a bottle and tested its temperature before giving it to her; never microwave the bottle of formula directly.
2. It might also taste better if mixed using an electric blender or mixer because its particles are so fine, they don't mix well immediately with water when you're just shaking it.
3. Some people suggest adding 1 tsp. of brown sugar to flavor it - apparently it's terribly bitter - and then slowly reduce that over time, if you can.
3. Have you tried using a medicine dropper to give the formula, teaspoon by teaspoon? Just like when you're giving a kid meds, apply the liquid to the inside of the cheek, rather than straight down the throat.
4. There's a woman Sue who posted on this forum with a 2 m.o. also hospitalized and feeding tube, etc. Kid ended up having stomach ulcers. http://www.actagainstallergy.com/aaa/7021-baby-prescribed-neocate.html
Maybe he has stomach ulcers? Did they test for that?

PLEASE get a second opinion from a new Ped. GI and possibly even a new pediatrician. Stay strong - hang in there!

[Anonymous]

OP - You are doing all of the right things. I know there is nothing worse than not being able to do the one thing that as a mother you think you should be able to do, feed your child. My daughter was born with a number of health issues but severe reflux turned out to be the one we found the hardest. She had a nasal gastro tube until she was 5 months old. Due to her other conditions she was in hospital for three months after birth and the dr.'s dismissed the vomiting and crying as related to her other illnesses. My husband and I finally took matters into our own hands and demanded prevacid. It took three more months for her to take her first drink of milk from a bottle while she was wide awake. And that is day my husband and I will never forget.

I know we had a different situation because she had other issues, but there really are worse things than a feeding tube. At the very least you know that your child is eating and gaining weight. We kept on with all of the other things while she had the tube and had to keep it in until she had weight gain in one week on the bottle alone (b/c of her health issues breastfeeding was not possible). But because she had untreated relux for so long it took her three months to forget the pain associated with drinking.

For us having an NG tube, the right meds and two incredibly committed parents is what go her through and turned her into a child that you would never know was so sick after she was born.

You will get through this, your child will thrive, and you will know that you can do anything. Hang in there. We are all with you.

[Anonymous]

Anonymous wrote:OP - You are doing all of the right things. I know there is nothing worse than not being able to do the one thing that as a mother you think you should be able to do, feed your child. My daughter was born with a number of health issues but severe reflux turned out to be the one we found the hardest. She had a nasal gastro tube until she was 5 months old. Due to her other conditions she was in hospital for three months after birth and the dr.'s dismissed the vomiting and crying as related to her other illnesses. My husband and I finally took matters into our own hands and demanded prevacid. It took three more months for her to take her first drink of milk from a bottle while she was wide awake. And that is day my husband and I will never forget.

I know we had a different situation because she had other issues, but there really are worse things than a feeding tube. At the very least you know that your child is eating and gaining weight. We kept on with all of the other things while she had the tube and had to keep it in until she had weight gain in one week on the bottle alone (b/c of her health issues breastfeeding was not possible). But because she had untreated relux for so long it took her three months to forget the pain associated with drinking.

For us having an NG tube, the right meds and two incredibly committed parents is what go her through and turned her into a child that you would never know was so sick after she was born.

You will get through this, your child will thrive, and you will know that you can do anything. Hang in there. We are all with you.

I will add that our daughter drank much better when she was asleep - instinct to drink seem to take over from her aversion to the bottle. Eventually she would take the bottle when she was drowsy but still awake, and then finally when she was awake.