New here with child who is a projectile

[Anonymous]

vomiter and reflux. He is 1 of 3 and he is 4 months old/2 months adjusted age. We met with the GI today and I am not happy with what she suggested at all.
A little background: Nico has been on Neosure, Isomil, Alimentium and now the GI wants us to try Neocate. Medications: Axid and now Omperazole 5 mg daily.
As you all know it is frustrating because he completely fights me to take his feedings. I should add in he has a cleft lip and palate. So not only is he a difficult feed due to reflux/vomiting issues he also is fed from a special bottle for cleft lip and palate that lets a lot of air into his system.
Has anyone had any success on Neocate? I feel like this is probably the last resort in formulas. I am just so tired and frustrated after feeding him and then I have to pep myself up to feed two more babies after him. I know this too shall pass but when?

[Anonymous]

welcome!!

yes, neocate has been great for us…it has helped my son immensely.

in my opinion though, the primary issue for you is the med. you say he is fighting you during feedings…this is a sign that his esophogus is hurting…meaning his PPI is not working. 5 mg is an extremely low dose, and i am not surprised, because most doctors underdose PPI’s. if you go to marci-kids.com (midwest acid reflux childrens institute) you can look up the recommended dose for your babies weight and age. my son was started on 24 mg or prevacid at 11 lbs and 3 months.

the lowest dose that i have ever heard of being effective around here is 15 mg daily…so perhaps you can show your doctor the research from marci-kids.com. i had to contact them and have them call our ped to get the proper dose, as she was clueless.

its hard to say if your baby really needs the neocate, since he isnt properly medicated and is in pain from acid that could be resolved with a proper PPI dose.

also, what form of prilosec are you using? there are certain ways to adminster certain forms of the medication.

[Anonymous]

Hello and welcome,

You sure do have your hands full. Triplets and one with reflux! God bless you!!

I agree with Natalia….the first issue is that his Prilosec dose is painfully inadequate. Unfortunately most docs under dose our babies because they are not aware of the current research at http://www.marci-kids.com that shows infants metabolize these meds 3-4 times faster than adults and so they need higher doses given three times per day. My son did not improve until he was on the marci-kids’ reccommended dose which for him was 10 mgs / three times daily. Some babies do fine on lower doses than marci-kids’ suggests, but your son’s dose is probably way too low.

Also, your Prilosec is probably compounded (liquid form) and often these compounds are not made properly and then they lose their effectiveness right in the bottle. Here’s a recent thread which explains it well.

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&a mp;KW=pharmacy+compounded+

Until you get his meds worked out you might want to try some Mylanta Cherry Supreme. It can offer some temporary relief. 1-2 mls up to 4 times a day….too much will cause loose stools….but it’s a safe med and lots of us have used it for our infants.

As for Neocate, it’s so hard to figure out if they need a hypo formula or an elemental formula or not when they are not properly medicated, so I’d probably concentrate on upping his meds first and then if he still has problems on a good dose of a PPI medication, try Neocate.

Well, good luck and glad you found us. I hope your little guy is feeling better soon.

[Anonymous]

Hi and welcome!

I’m so sorry to hear all your little Nico has been through. It must be so hard to handle three babies on top of a refluxer with a cleft! My son was also born with a cleft palate (but not the lip). I sure know how hard it is to feed a cleft palate baby, especially one with reflux. Are you using the Haberman bottle? My son actually has a feeding tube because he was unable to learn to eat (he had other issues as well). Anyway! I don’t have any advice to add to what the others already said. Just wanted to say welcome. I hope you can get Nico’s reflux under control soon.

[Anonymous]

Gosh I am impressed with how educated all you moms are. That is wonderful. I wish I had seen this site a few days ago as Nico say the GI yesteray afternoon. However I am going to go to Marci-kids and look at the information.
He does have his 4 month peds appt tomorrow so I can talk to her as well but I am thinking she will not increase his dosage without approval from the GI I dont think.
One more question for all of you whose child has a feeding tube at what point did they decide to do this and who inserts it every couple days? Very curious about that. Nico had one when he was in the NICU but the nurses change it every couple days.

[Anonymous]

Hi there. Welcome to the site! You must be so busy… having triplets and a baby with reflux and feeding issues! Hopefully we can help you to sort things out.

I’d also try and go for a med increase, even though the feeding problems can be for several reasons. At this point, I guess it’s hard to know if it’s from the reflux, a milk allergy/intolerance, or his cleft-lip and palate. The meds seems like an easy starting point. How does he fight his feeds?… is he arching and crying etc? Does he choke or gag on feedings?

My daughter has a feeding aversion likely from the pain of her reflux, so I know how hard the feeding problems can be. I don’t know how much your son weighs, but 5mg is a VERY low dose, even by conservative standards.

Also, if you’re giving your omeprazole as a compound, there’s a good chance that it’s not being made properly, especially if flavouring has been added. If you’re giving the capsules or MUPS, then they need to be given on an empty stomach and followed up with a meal 30 minutes later. If you tell us what form of med you’re giving, maybe we can help you out more.

Good luck.

[Anonymous]

Nico is taking 2.5 ML by mouth twice a day (Omeprazole 2mg/ml SUSP)
They did not state to take it before meals or anything like that. He is also on Reglan 0.5 ML 30 minutes before meals. Which I feel the Reglan is worthless since it is suppose to move the food through faster so there is nothing to vomit up. Well not true with my boy he has plenty still there to vomit up.
How did everyone convince there doctors that the dosing needed to be much higher? I dont want to insult their intelligence you know.

[Anonymous]

we had to show them research from marci-kids.com…i contacted marci kids myself and had dr phillips call her. some people have had to switch doctors several times.

also, reglan has potential to have some scary side effects, because it crosses the blood brain barrier. it is meant for DGE, has your baby been tested for DGE?

also, i would read all of the info in the link for how to prepare compounds, because almost all of the time the pharmacy makes them incorrectly, and they are unstable.

you do not have to time properly made compounds with meals.

it is important to give at least 3.5 ml at a time to ensure there is enough buffer in each dose to prevent the drug from degrading in the stomach.

[Anonymous]

What is DGE? He has had an upper GI to rule out pyloric stenosis and a PH probe which I found not to be too helpful because the day of the test he acutally had a good reflux day and hardly no spitting that day. Well I guess I am going to send his ped to the marci kids website and see what she has to say. She is pretty proactive and open to suggestions. As for the GI I may want to be referred some where else. Not that age matters but she looked like she was late 60’s and maybe just an old school type of doctor. Her exact words to me were “there is not much they can do for him except the increase in dose, change again in formula and if that doest work then to wait it out until he grows out of it.” Ummm yah thanks do you realize I have two others at home and my life doesnt just revolve around my one son. Very frustrating.

[Anonymous]

dge is delayed gastric emptying. there is a specific test for it. if your baby doesnt have this, then i would avoid reglan all together. if your baby absolutely needs some type of motility medication, there are other options besdes reglan. reglan has had many lawsuits filed agasint it and i dont understand why so many doctors hand this out like candy to babies who havent been tested for dge. i am frustrated for you. good luck. be persistant!

[Anonymous]

NO he wasn’t tested for it. My ped left it up to me last time we met if I wanted to continue using it or not as we cannot determine if it really helps. I am going to talk to her tomorrow about just discontinuing it because there has been no clear improvement with the use. So far today he has had a good day. I started him on the Neocate last night at 6pm which he threw up the first ounce and then kept down the rest and just had a small spit up. He tolertated the 10 pm feed, 6 am with a small normal spit any child might have, and did good at his 10am feed. So I am hoping maybe the medication increase and formula change will work. But I have hoped this before.
Thanks for everyones input. I am sure to let everyone know his status post surgery.

[Anonymous]

Hi again. I personally am not a big fan of the compounds, only b/c we had such a horrible time with them with Hailey. There’s a thread stickied in the medications forum, and it talks about how to ask for it to be compounded- no flavourings of any kind, 16.8 percent sodium bicarbonate, and a concentration between 2-4mg/ml such that each dose is at least 3.5 ml per dose. Some people have used zegerid, which is a stable form of omeprazole suspension, but I’ve never used it, so I’ll leave that up to someone else. Other people use prevacid solutabs, which can be pretty easy to give, but unlike the properly made compound or the zegerid, needs to be given on an empty stomach and followed up with a meal 30 minutes later. I would assume that’s a pretty difficult feat with triplets!

The test for gastric motility is a gastric emptying scan. Did your son ever see the feeding team for an evaluation while he was in the hospital? It probably would have been done by an OT or an SLP, and they would have tried different ways to feed and given tips.

About the feeding tubes, I only have limited knowledge, but some babies start out with ng tubes through the nose and then go on to get g-tubes through the stomach, others stay on the ngs for longer time before getting a g-tube if they need it, and others start right out for the g-tube. Heather and Thais are two very knowledgeable people on this topic, so maybe if you post under tube feeding issues they’ll see you. I believe that another mom, Leo, also has a daughter with a feeding tube. I could be wrong, but I’m quite sure that they’re not changed that often at home, and many moms learn to reinsert them when they’ve come out. How long did he have the ng for in the NICU? When did he last have an ng? How long has he been home? I’m sure that they told you in the hospital that the ng can temporarily cause reflux after because it holds the sphincter in an open position and even after it’s removed, it can cause reflux until the sphincter tightens. My only reason to mention that is the hope that maybe your son will outgrow it soon for that reason.

I agree with you, that if your doc is taking a “wait until he outgrows it” approach, even with the feeding problems, then you might want to get a second opinion. We got 5 opinions. Where are you located? Maybe someone here can recommend a new GI for you.

Good luck. I can only imagine how difficult it is to manage everything, and hope that things improve for your son soon.

[Anonymous]

Hello,
Lori’s right about the NG tubes, you don’t have to change them as often at home as they do in the NICU. They teach you how to change the NG tube at home. I used to change it on Bryce once he was home. If I remember right you only have to change them as needed which is like every couple of weeks (it’s been awhile since Bryce had an NG! ) Anyway, Bryce came home from the NICU with a feeding tube and has had a feeding tube of some sort ever since.

[Anonymous]

Nico was born 2/14/07 and had a feeding tube shortly after birth. He was in the NICU for 3 weeks and they removed his NG tube 2 days before coming home. He was eating from a bottle but not even 1 oz on his own which is surprising they released him. He didnt immediately start to spit up it happened gradually over the next few weeks when it hit an all time worse few weeks ever. It has gotten better but not great. They never told me the tube could cause reflux. The other two had them but they have no feeding issues at all. Nico is just shy of 11 pounds. Sounds little but he was born at 3.15 so this is a good gain for a triplet who is gestationally still on 2 months old but really is 4 months.
We live in Rochester, New York and live near one of the best hospitals in the surronding areas Strong Memorial Hospital. I am going to see what his feeding habits are like post surgery next week. They may improve ( I hope) If not I am going to ask about the NG tube because at this point I just want him to gain weight. I am not worried about him grasping the sucking aspect becuase once they repair his palate at 10-12 months of age I am told he will go right to a sippy cup and no bottle. yeah!

[Anonymous]

What surgery is he having next week?

I guess reflux is fairly common in preemies. Hopefully he outgrows it soon, and that he gets some relief in the meantime.

s&h’s mum2007-6-13 14:17:55

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