Infant with GERD and delayed gastric emptying

I have a 3month old son who is GERD positive and has delayed gastric emptying. At 2 months he was diagosed with silent reflux and put on Zantac. He did very well for 1 week. He had his 2month shots and then spiraled out of control. He went to the hospital because he wasn't eating and his reflux seem extremely aggreviated. The hospital took adomial ex-rays (which were normal) and ran some blood tests that were normal. The hospital couldn't run certain tests because his blood kept clotting. His dose of Zantac was increased and he was put on Nutragamin formula. He was even worse after this. His feedings were extremely difficult and the volume of his feedings decreased even more. Then he was put on Prevacid 1/2 tab 1x a day and we put him back on Soy formula. We met with a ped GI specialist who increased his Prevacid 2x a day 1/2 tab and Carafate 3x a day. Gi Dr ordered another blood test for allergens, but that clotted as well. He has gotten progressively worse each day since the increase dose of Prevacid. It has been absolutely horrible. You can tell he is hunger, but in pain whenever he drinks. He had an ultrasound which was normal then an upper GI which indicted delayed gastric emptying. The Pharmacy had to order the medication (Eryped), so we haven't started that yet. In the meantime, worse has gotten even worse. Yesterday he only had 6oz the entire day. I gave him a little AJ mixed with water, so he would have some fluid in his body. He took the juice without any problems, but completely rejected the formula. It was amazing how as soon as the formula touched his mouth he screamed and then took the juice willingly. I'm at a loss as to what to do. If you have any suggestions, I would really appreciate it. He had such a bad day yesterday that I stopped the Prevacid dosage last night just to see what would happen. I gave him some infant tylenol this morning (no Prevacid) and he drank 4ozs, which is more than half of what he had yesterday the entire day. Any help or suggestions would be great. This has been the hardest thing I have ever gone through. My son is in extreme pain and discomfort. He screams and cries during every feeding all day long. I don't think the Dr understands how bad the situation has gotten. We need some relief. I'm desperate for any advice.    

[selmaS]

Hi Lucy,
I am so sorry to hear ur little guy is in such distress.May I ask, did they check to see if he is allergic to the formula?
It may be a constant in ingrdient in each that u tried, but it could be something like that.

I pray u  find ur answers soon!

Godspeed
"selma"

[mifegr]

Hi, I'm a nutritionist.  I don't have children of my own.  Mine are adopted and I adopted then when they were no longer babies.  So, I do not know the answer to this question.  Is it too late to start breast feeding?  If your doctor says that you can still breast feed, start breast feeding him right away.  NO formula.  Just 100% breast milk as far as milk is concerned.  Don't start weening him off the breast milk until he is 12 months old.  Then (and not before) start weening him off, cutting him back until he's off the breast.  This should be done slowly.  It should take no less than 6 months.  Breast fed children are so much healthier.  In so many ways they benefit.  Emotionally, mentally and physically.  Babies should be breast fed until they are 18 months.  If you can't breast feed because you work full time, AND you have a husband who works so you do not absolutely have to work, stop working full time and go part-time.  Your kid is more important than your pay check.  Good luck!

[mifegr]

Forget about asking your doctor if it's too late to start breast feeding....Contact the Le Leche League (google this) and ask them.  They are the experts when it comes to breast feeding.  Their advice is better than a doctors on this subject (and most doctors will admit that).  

[allysononweb]

Hi Lucy:

My husband and I are having very similar problems with our 7 month old.  Have you had resolution with your son's problems?

Our daughter has been on antacid medicaiton since last December and she is just not doing well at all.  They started her with Zantac. It seemed to help for a little bit but then everything just got worse. They put her on Prevacid and she is still taking that. She goes through phases where she does not want to eat at all and it is a struggle to get her to eat 6 oz a day. She only weighs 12 pounds and she actually lost weight at her last appointment. We had the upper GI endoscopy done and the ph probe.  Everything came back normal. We don't know yet if she has reflux really because she was taking the Prevacid when they did the ph probe.  The pediatric GI just put her on erythromycin for delayed gastric emptying last Tuesday and it does not seem to be helping at all. She had 3 episodes of massive vomiting last night and today she has only had 2 oz of food.  

My husband and I are just desperate as she is losing weight now.  

I appreciate any advice.

[tntsm]

Hi Lucy,

I am so sorry to hear about your child. I am currently going through what seems to be the beginning of what you went through. I mostly wanted to comment on the posts about going back to breastfeeding and the la leche league. I am 100% an advocate for bf and understand how important it is, however people do not realize how insulting it is when you have a child that is going through such medical difficulties. There seems to be a lack of sensitivity there. As if as parents you wouldn't want to do what is best for your child. I just had to switch my child to formula bc of her allergies and gi problems. It kills me to not be able to bf, but she is not nearly in as much pain as she use to be. I fully respect what the women of La Leche League have to say,but this is a medical concern for a dr to handle.

[laural3325]

my son is 8 months old and we are going through the same things.. he stopped wanting his bottle shortly after his 6 months shots... We have had 2 swallow studies (came back good) and a scope done which showed everyting is good on the inside. He is still not wanting his bottle. We give him 7.5 mg of Prevacid twice a day which seem to help but it isn't enough... The only thing we can get him to do is eat  his formula in his Rice cereal or oatmeal so you many wanna give that a try so your little one is not losing weight.

They sent us to a speech thearopist calling it "behavioral" thought maybe it was a sensory issue.  When we met with her she said nothing is wrong w/ our child other than he has severe reflux. While we ere there for 30 min she saw the acid coming up in his throat and him choking on it.... This is so hard a frustrating. Now we are going back to the GI specialist who is 3.5 hrs away. We want to have a 2nd opinion but there is no place close to home and most places have a 3 month waiting list! The speech thearopist said the longer he goes not eating, the harder it is going to be to "teach" him that not all things that go in his mouth cause pain, which is why she thinks he will need eat fruits or take his bottle  :(

[selmaS]

Infants and toddlers that have reflux issues may have speech delay...and should work with a ST.....

And it could be that ur child associates the bottle with not feeling well and could be y he/she will not take it....try pedialite in a cup with a straw and see if they take that.....but since this developed after the 6 month shots, there may have been something in the mix that caused the flare up.

good luck
"selma"

[mctwins]

I could have written that myself....my son stopped eating after screaming during bottles for about 3 months. Also he was always upset and seemed so hungry. He was losing weight....puking a ton.  FINALLY I took him to Boston to see a better GI. It turned out he had esophagitis from reflux that was out of control. Some changes we made that helped that include:

-1 tablespoon of rice to every oz of formula....like seriously I think this helped the most. Buy beechnut gentle texture...it flows through nipples more evenly.
-prevacid dose given 2-3X a day.
-switched to elemental formula (elecare)

Now he's puking a ton because of his delayed gastric emptying, so I thinks he has to go on meds for that too...but his other symtoms (symptoms) (eating aversion) are gone. You may want to try taking away other foods that might be allergens, and maybe starting over all his first after a week or two.  PS: formula can safely be mixed to like 24-26 calories. PLUS the rice adds like 15 calories per oz...so yeah...he pukes a ton but he's finally growing.

[4alvakids]

I know how you feel.  My son just turned 3 months and is starting to not want his bottles.  He takes prevacid twice a day (half a tablet in the morning and the other at night) and is taking erythromycin 3 times a day.  He was drinking 6oz with no problem now it is sometimes a fight to get him to drink it.  He doesn't sleep that well in the morning or evening and has started to have crying fits where he screams.  He has gained weight good according to the doctors but he doesn't look plump like my other 3 children did at his age and I have strangers asking how old and when I tell them they say he is tiny.  I'm very frustrated and stressed.  I feel like I am a breaking point and just wish he could eat and sleep comfortably.  I really hope he doesn't get worse.  I feel like something is really wrong..my gut is never wrong.  I hope things get better for you.

[bigrroy]

I"m 71 and my mom said the same things ... without the medical terms.

I have had acid reflux all  my life ... and in my 30s bile reflux started. There was no temporary relief for bile reflux - there is for acid reflux but not bile reflux.

A couple of years ago, out of sheer desperation I tried ice cream. During a bile reflux attack (they're bloody awful) I ate ice cream ... and the last four times in a row it's worked. 1 to 2 cups of ice cream and 20 minutes later I'm completely ok. I don't lie down during an attack ... or after eating ice cream.

Any flavour seems to work - frozen yoghurt does not.

Good luck - I'll say a wee prayer for your son.

Gawdz reflux is horrible.

[laslas]

did anyone check the babies for lactose intolerance.  the lactose could be in formulas, or caseinate in other products...which is a milk derivative.  that and delayed gastric emptying could be an awful combo.
hoping by now things have been resolved.
Lynne

[Angiengiosmommie]

First of all we rely on doctors way to much as if the were GODS. A mothers intinct is way more vb powerful. so if your instincts say that you should be bf then do it. Doctors do not know best all the time and they are definately looking out ones own interest. It is rare to find that doctor that isn't but they are out there. My 5 week old stated having vb problems after I began supplementing with formula after 3days from leaving the hospital. my daughter began spitting up and crying as if in pain and not - sleeping well.  I spoke with a homeopathic doc and he told me to exclusively breastfeed and prescribed two remedies to create more breast milk. its been almost 2 wks and she still is slitting up and once spit up blood. At this point my husband had enough and wanted to start putting infant oatmeal cereal with breatmilk. That will help the milk to not come up as much and help to neutralize the acidity and as the babies body matures and begins to empty the stomach faster it will repair and damage done to the GI tract more quickly. Now as for formula, a la leche league consultant told the morning my baby girl spit up blood is that formula can cause damage and symptoms that last weeks even after no more formula is being given. I recommend for those who can't breastfeed or choose to not make the sacrifice then consider goats milk it has many properties close to breastmilk(go to white farm.com) it maay need to be reduce by water or youcan buy pasturized powder form a vitaminshoppe.com. A lady on these forums wrote in and had given goats milk to all 3 of her children. The final thing I need to mentio is to all of you especilly those moms that mention that you see your child more in pain after their shots, all I can stress is do your research about vaccines. If anything wait until 2 yrs old to vaccinne along with a healthy lifestyle for the child and family everything will be fine. Educate yourself there are many books on raising a unvaccinated child. I personally cc hose to wait to vaccinate my children my first child is now 2 1/2 unvaccinated and healthy never has gone to the doctors and breastfed for 1 1/2 years. Be has rarely gotten sick and when he does its a congested nose wich I give him Chestal-a homeopathic cough syrup by Boiron you find at walgreens or health food stores. Colic calm is homeopathic too for colic,gas,& refux. That is ar CVS or at coliccalm.com. My 2 1/2 year old just had the most mildest case of chickenpox. There is a book by an MD called Vaccine Alternatives: A guide for parents,  travelers, etc by Ervin Davis that helps with understanding more about vaccines and the diseases we are immunizing against as well as eating whole foods. Hope this opens your eyes a little and gives the moms the confidence to follow your gut when deciding the best for your baby b/c the doctors don.t always know - what is best for U.

[Angiengiosmommie]

I would love to know how the babies and mommies and mommies r doing. I will look for your posts. God bless.

[Angiengiosmommie]

I would just like to clarify thay I wasn't one of the lucky ones that breast milk was enough for my two children. I had to find supplementation b/c my son was never satisfied and now with my daughter she began reflux episopes with supplementing with formula and breastmilk alone isnt helping her reflux either. The stomach acids are to strong and her body doesnt keep the food down ontop of delayed emptying. So I feel so concerned for the babies being experimented on with meds that don't stop the reflux anyways and the probing and testing that results come back neg. It can be more simple then this is some way. Milk intoleranceor allergies rare but definately exist don't mistake the validity if is a real problem for some. To be completely honest for those of you who need help and are searching for alternatives to the docs drawn out with no solution course I put my son on milk and oatmeal cereal at 2 mos since he wanted to suck on the boob forever, he was't relaxed or content also. I always put him to breastfeed after supplementing and he breastfed for 1 1/2 years and got all the immunity and positive nutients that come from mothers milk. So if you just can't fulfill your child with just your breastmilk no problem just insist on it in some way. This world might be a much happier an healthier place if us mothers found contentment and satisfation in breastfeed our lttle ones. I don't want to open a can of worms. I just hope to help any mother in need buy MY OWN petsonal experience.

[kaedynsmommy]

It is a blessing that I found other parents that have children with this issue! Although none of us want to see our kids with these problems, I felt so alone, and thought that no one else was experiencing this! I have a 6 month old son, whom I am now in the hospital with as I write this.  This is our 3rd hospitalization for the same problem, dehydration as well as not feeding well.  Let me start from the beginning:
My son always ate very well, actually more than any infant his age.  He has had a handful of "accurate" apnea episodes, and has a severe milk allergy.   Then back in the beginning of January, he was suddenly diagnosed with RSV.  During this time, he was hospitalized, and due to the virus, not eating well when we were discharged,  I was continuously told that EVENTUALLY his feeding would increase as the virus left his immune system.  Three months later, we are STILL battling this issue! We have made numerous trips back and forth between G.I, and the pediatrician, as well has our lengthy hospital stays.  Kaedyn is on 4 different medications which include Prevacid, Zantac, Carafate, and Levsin.
Finally months after my requests to perform a GASTRIC EMPTYING exam, they finally ordered for one.  A PH probe has been inserted today, and we will have to wait 24 hours while the recordings take place.  
The gastric emptying exam showed that my son's ability to empty his stomach takes a total of 125 min, where as a "normal" child only takes 15-20 min.
As of now, we are on our 3rd hospitalization, and awaiting more tests as well as a resolution to our problems!  

[Angiengiosmommie]

Kaedyn's mommy, how are things going? Dr. Sears website helped me alot when I was struggling with my daughter Angelina's reflux and delayed emptying. search Gerd on the website. Says to eat more frequentbsmaller meals. I await your response.

[Angiengiosmommie]

To all that are reading in, an update for what has helped my baby angelina. I started her on baby food since the spitting up was not subsiding and she had alot of saliva coming out of her mouth. That is a good sign that her body can begin to digest fruits. Any meats won't be given until later. Sha began soilds(baby food-fruits only) about two weeks ago. She will be 5 mos on the 23rd. So to kaedyn's mommy maybe think about baby food fruits, by now he would enjoy it very much. Plus it is not as easily to come back up.  Let me know if he has eaten anything more than breastmilk/formula by now.

[rqcoordinator]

It is amazing to read so many stories about relux and delayed gastic emptying and, in a odd sense, it is comforting to know that I am not alone. I too have an infant who has a story that is not yet resolved and has seem to have gastric issues since birth. As mothers we all know when something "is just not right" aka mother's intuition. My daughter was born to term by c-section (due to her brother's birth 4yrs earlier and no, a v-bac was NOT an option due to the circumstances of the first c-section) and was a good healthy 8lb 3oz baby. I was able to nurse her with in an hour after delivery and right from the start I noticed that she would only eat for 5min (vs her brother who was a chow hound from the start as a newborn). Even as a 2-3 day old infant she would only want to eat for 5 min and then was full and had a good self schedule of every 2-3hrs like clock work.What also struck me as odd was how many poop diapers I changed vs. pee diapers with in the first 24-48hrs of life. A few days after coming home she then started projectile vomiting after every meal and never acted or cried in hunger post emesis. I always expressed my concerns to her doctor who told me sometimes infants have delayed maturity of the intestines and it can be normal so to keep her upright after feedings. Over time and experimenting with the longevity as to how long to keep her upright, she eventually stopped projectile vomiting after every meal and it soon became less frequent as to how many times she would vomit. The odd part was that as she grew older, she would eat on average not much more than 2 oz per feeding. She didn't really cry out in pain when she would eat, she would simply push away. At 3 months I started weaning her from breast feeding to bottles since I was going to back to work when she was 4mths old and eventually had to move her onto formula when I did go back to work due to my lack of lactation. She always ate well from a bottle regardless of the type of food breastmilk vs. formula) but again, never ate much. She did have adequete weight gain at 2mths (50% on growth chart) but I started noticing a weight difference by the time she was 3 mths old and at her 4 mth check up she had lost 8oz and was very visably thin. I was told that it was most likely due to the stress of me going back to work (mind you she was watched at home by a family member who she knew VERY well) and the switch to formula. The Nurse Practicioner (who was normal to see for vaccines according to clinic policy) supposedly confered with her doctor and to recheck in a month and for me to start logging her feedings,even though I continued to express my concerns about her vomiting and the irratic pattern her bowel movements were from constipation to severly loose/runny causing almost instant diaper rash. During the waiting period I also started adding cereal to a few of her bottles every day to which she only became more constipated, gassy and then irritable. So at her recheck appointment she had lost even more weight (while doing weekly weight checks) and when we DID get to see her doctor, he was greatly concerned (thankfully I faxed over her feeding chart prior to her appointment) and starting refering us to see a GI specialist. While we were at our local hospital getting blood drawn for some labwork 10 days after her recheck, a nurse asked me about the bluing around her lips and then I noticed the bluing of her lips. Many hours later and a sudden and constant increase in respiratory rate with a great need for oxygen landed us an emergency flight down to the children's hospital that was 7hrs aways drive time from where we live. 2 weeks there with a gammet of tests including many chest xrays, an Upper GI, a pH probe, a motility study, and an upper bronchoscopy reveled that she had GERD with delayed gastric motility (18% emptying in an hour) but no explination for the respiratory issues (aspiration has not been evident). So with a transfer to another children's hospital that specializes in pediatric gi issues, here we sit and not one step closer to helping her. She has a NG tube that was advanced to a NJ tube placement to hopefully help her gain weight, give her stomach a vacation and hopefully her lungs to from the reflux. She was on ranitidine 2x a day prior to admittence to the hospital that was not working, then moved onto prilosec 2x a day and reglan 3x a day with not much great effect and now she is on prevacid 2x a day, erythromycin 3x a day and augmentum  2x a day (antibiotic for her postive lung culture with moraxella-a bacteria that causes ear infections which she did not have) with not much efficacy either. Now she is scheduled for a lung biopsy next week and we are going to be coming into our 5th week of hospitalization as well. Not sure how much this might help someone but hopefully it might give someone piece and comfort knowing that they are not alone. I have found that the answer we are given is not always the answer we are wishing to receive. Good luck to everyone out there. I pray that doctors may one day find a solution that actually works on a long term basis.

[proudmama8060]

Hi I have 10 month old who was finally diagnosed with Delayed Gastric Empyting (DGE), he has been categorized as failure to thrive because he weighs only 15lbs at 10mos (he was 16.2 lbs at 6mos). He has been seeing a Gastroenterologist for the past 2 months who has been running a lot of tests trying to figure out why Jeshua is continuing to throw up even after being on Omeprazole ( a compounded medication for GERD in infants) and Eryped (erythromiacin). It has been extremely difficult for us as well. I nurse him and have taken dairy out of my diet since he was tester for allergens and found to have a  milk allergy and that helped with rashes that he got and some of his discomfort but not his vomitting. We see the doctor next week to get more answers on his DGE, but for now what we do is continue with his meds and yes the Eryped has help the amount of vomitting but not taken it away, and trying to feed him a little bit of food more often, because if we try to feed him the "normal" amount his stomach gets bloated and he just throws up for hours. He seems to be putting on some weight and is not nearly as cranky but we still do have to see what else we can do. I would definitely get a Pediatric Gastroenterologist (if you don't have one) and make sure that your doctor sends them all of your sons info. and see what other things they suggest. Keep holding on I know it can be so difficult, I've been dealing with it for 10 mos. and they're only now figuring out what the core problem has been the whole time, so know that you are not alone. Don't forget to trust your instincts as a mother and ask plenty of questions of the doctors and tell them exactly how you feel and how concerned you are. You are the best advocate for your child, you know how your child is better then the doctors do so make your point extremely clear to them.

  Hope this helps. God Bless.

[pooggy]

We tried chiropractic for our 2 month old little girl and I didn't think it would help but honestly it helped her a great deal down to vomiting once every couple of days instead of every hour

[kevieb]

I just thought i would tell you that when my youngest was born she kdept desatting--they told me it was a problem with her lungs.  we brought her home on oxygen and an oxymeter.  She was on oxygen for a month--though I noticed early on that her oxygen levels stayed up while she nursed.

I learned months later from our ped GI that reflux can cause desats---I don't think my daughter ever needed to be on oxygen--she needed reflux meds---actually, her reflux was so severe that she had to have a fundo a week before she turned 10 months old.  She was failure to thrive, anemic, refluxing almost 25% of the time and her esophagus was getting ulcerated at 8 months old.

I also want to tell all you moms out there with little ones suffering with GERD that my daughter is now 9 years old and in the 3rd grade.  She has never had any problems from her surgery.  she cannot throw up, but she can burp.  Basically--she came through it alright after all was said and done.

She was failure to thrive even after her surgery, she got esophageal thrush and developed obstructive sleep apnea and had tonsils and adenoids (adenoids) removed at 2 years old.  Twice after her fundo they wanted to put in a G-tube, but I managed to get enough weight on her to avoid it both times.  

It was a tough couple of years, i feel for all of you going through it!!Good Luck!!

[nnp111]

I'm neonatal nurse practitioner.  This is a very challenging condition.  Go to www.chop.edu look up gastroparesis.  May help you rule out conditions, help with treatment