Infantreflux.org | Reflux Meds not working?

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March 21, 2006 at 10:22 am #4350

Anonymous

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Let me give you some background to start. We have our son on Alimentum, he can’t tolerate milk or soy. We are giving him both Reglan and Zantac, supposedly the max dose for his weight. He is miserable, back arching at at least half of his feeds, fussiness all day. This morning he threw up at least an ounce or more of formula I fed him. We just realized that the rice cereal we were giving him had soy in it so we changed to an organic brand with no soy. I also just realized that the Alimentum has soy. I am not sure if he is suffering from reflux or a soy allergy or both. His nose is really stuffy too. Last night he screamed his head off for a half hour after an eating/back arching spell.

I have been reading about neocate. I seem to notice that it causes constipation in a lot of infants. But does it work? Please help!

1. Did you switch from Nutramigen/Alimentum to Neocate and notice a difference. If so did it cause constipation?

2. Is it possible that the meds he is taking for reflux are in effective.

3. Should I ask my ped. to refer me to a specialist?

My husband and I are frustrated. I go back to work next week and I feel really bad for our new nanny.

March 21, 2006 at 10:41 am #4352

Anonymous

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Absolutely go see a specialist.

We didn’t need a special formula with Ally, but the hypoallergenic formulas still contain milk, so if his allergy is really bad, you should consider switching to an elemental formual like Neocate.

RE the meds . . . Have you tried a PPI? Zantac was not helpful for us, but Prilosec made a big difference. If you’re curious about the different types of reflux meds, check out http://www.marci-kids.com

Does your son have delayed gastric emptying? That’s what Reglan treats. If he doesn’t have it, then it’s not doing anything and may just be exposing him to unnecessary side effects.

March 21, 2006 at 11:21 am #4355

Anonymous

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Neocate has been a life saver for me and my son Grayson. We started on it about 4 weeks ago and he is so much better.The arching and crying have just about completly gone away. The reflux does seem to be getting worse in the last week or so but I think it is time to increase the meds.The neocate seemed to constipate him severly in the first week or so but he seems leveled out now.I had to give him some Miralax one time and every since then he goes about every other day. We still have many other issues to work on but the Neocate has been a great help.

March 21, 2006 at 12:12 pm #4360

Anonymous

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Thank you for posting a reply! This reflux thing is so frustrating.

I don’t know what delayed gastric emptying is. He has colic. I haven’t been totally onboard with the Reglan after reading the side affects. I have told my ped several times that I think we need to switch to a ppi but he doesn’t seem to think that would make a big difference. I told him that not all medicine works for all people. I am trying to get him to let me try something else, I have to wait until next week to see if removing the soy in his rice cereal has any affect. But I doubt it.

If anyone else has more words of wisdom, I would love to hear them.

March 21, 2006 at 12:20 pm #4362

Anonymous

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1. When did you switch to Alimentum? It can take a while to clear the offending proteins from his body. Yes, it does contain milk and maybe soy, but they are broken down so that they should not cause a reaction. HOWEVER; some babies are still sensitive to these broken down proteins and they need Neocate. We were on it for 3 months. Never had a problem with constipation. Also, because you used the rice, you may want to give Alimentum a bit longer??

2. YES. Zantac did very little for Matthew (and for me, i had a horrible case of reflux in december). The only thing that seems to def work are the PPIs. THEY ARE A DIFFERENT MEDICINE. Your ped has no clue. SWITHC; GET A REF.

3. SPECIALIST; SPECIALIST. Don´t know where you are but you will find under one of the folders everyone who we use, or you can tell us where you are and people can recommend something.

You say your baby has colic… maybe it is the reflux??

March 21, 2006 at 12:33 pm #4363

Anonymous

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I am starting to think it is reflux and not colic at all. We have been on Alimentum for about 7 weeks.

He is fussy all day but doesn’t really have long periods of inconsolable crying. He doesn’t pull his legs up and scream, he arches his back and pulls away from the bottle and screams. But he still acts like he wants to eat. He has the hiccups at least 4-5 times per day usually within 30 minutes of the time he eats, and they always lead to a fussy period or a crying rage. He sneezes about 15 times a day at least. He coughs and gags especially when he burps or gets the hiccups, and he is constantly acting like he has a bad taste in his mouth. From what I can tell those are all clasic reflux symptoms not colic symptoms.

We are in Michigan, Grand Rapids is the closest major city.

March 21, 2006 at 5:54 pm #4382

hellbennt

Keymaster

from my welcome/intro there’s info about zantc and reglan and how they’re given ‘just because’ https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;am p;am p;PN=1&TPN=1

March 21, 2006 at 6:01 pm #4383

Anonymous

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I’m a former Michigander, in tx now. I was going to go up there and see my moms gi guy in livonia, he is awsome. Anyways, We just made the switch form nutramigen to neocate becasue she started having issues like horrible gas and loose stools. It took a couple of weeks before her body got used to it and she could poop without a laxitive. We give her peaches and 3 oz water every day to help and now no probs.

Reglan is nasty stuff, we switched to bethanochol.

A PPi would be better than zantac, sounds like he is having sandifers symptoms. Your ped can prescribe it and the sooner the better because it takes a couple weeks to get into their systems. Also, read past posts on how to use the zantac in the mean time.

Gerber has soy in it, Beech nut brand does not. My daughter is milk soy protein sensitive, makes her gassy and she has had blood and mucuos in her stools.

March 22, 2006 at 1:34 am #4395

Anonymous

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Seeing a specialist and going onto a ppi drug REALLY REALLY will make a huge difference. The signs you describe sound like classic reflux. When my baby was two months old and I began to describe his symptoms my ped asked, does he cry or is he fussy all day? I took this really literally since I had heard about colicky babies who cried for hours on end nad I told him no, he is fussy on and off. Well, I didn’t realize that this is classic reflux patterns and behavior. Zantac is often truly ineffective, and doses have to be changed frequently to accomodate their bodies becoming used to the drug. A ppi drug should really help control his reflux. MANY of the babies described by their moms on this web-site are on ppi drugs. See http://www.ppiknow.com for info on ppi drugs in general. My son is on Zegerid, which should have an explanation on the http://www.marci-kids.com website. They also have dosing info, as Tiffany mentioned above. Often, even ped gis underdose in my opinion, from my experience and from what I have heard on these forums. So educate yourself on proper doses and be very assertive to get a referral if you need one. Sometimes you can wait a loooong time to get in with a good ped gi, and it sounds like you can use the help ASAP. Also, write down these symptoms you are seeing and count how many times he spits up in a day’s time. Count the number of really fussy episodes nad notice if they are linked to after he eats. Try to keep him upright after feeds for at least 30 minutes (bouncey seat or baby bjorn or upright in a sling, etc.) and try to have him sleep on an incline if possible. These things make a huge difference. Welcome!

March 22, 2006 at 10:10 am #4402

Anonymous

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I’ve found that pediatricians are there to treat ear infections and that’s it (well it sure seems like it). Go to a GI. and bring with you your research. The docs always seemed to listen to me more when I bring in articles from creditable (sp?) sources. This site is a perfect example: http://www.marci-kids.com/treatments.html It explains why Zantac is different than a PPI and why it doesn’t work as well for children. Here’s another great site/page explaining why these reflux kids often have respitory issues that are directly linked to the reflux. http://www.infantrefluxdisease.com/lpr.php…

Lastly, I just wanted to mention/remind you that the acid can cause ulcers in the esophagus in a matter of months if the child is not on the correct meds and then it’s really bad. Have you read the posts about Sandifers Syndrome? That is what the arching is called. http://www.marci-kids.com/rigidbodyposturing.html

March 22, 2006 at 12:36 pm #4411

Anonymous

Inactive

What you are describing definitely sounds like reflux, and I agree about the PPI. If your little boy has reflux he’s probably hurting and that’s why he doesn’t want to eat. My babies with reflux always seemed conflicted – they showed signs that they were hungry, but once they started eating they would “fight the bottle” as if it was hurting them. They were hungry, but eating caused them pain because of the acid backing up into their esophagus.

The PPI made all the difference in my little boy. And it’s true, most doctors will not prescribe a high enough dose, so check the marci-kids site first and arm yourself with the knowledge you will need. My doctor wouldn’t prescribe the correct dose until I printed the information from marci-kids and sent it to her. Once she saw the research she was willing to presribed the higher dose he needs.

Once my little guy was on the right med and dose he got much better. My poor little girl suffered needlessly for months because when she was a baby I didn’t know anything about reflux and I assumed my doctor knew what she was doing, but the Zantac was doing nothing. Thank goodness for my son I found this site this time and got the information (and support) I needed to help him.

Good luck, and I hope your little boy gets better soon.

March 23, 2006 at 8:10 am #4455

Anonymous

Inactive

I have an appointment today with my ped. I printed the items from Marci-Kids about the PPI’s and I am bringing them with me. I am pretty sure that my son has his second ear infection starting. He had one at three weeks, now another at 11 weeks.

I am going to ask for him to refer us to a specialist. Thanks for all of your help. This is really scary, I just can’t help but be worried that all of this medicine is doing some sort of long term damage.

March 23, 2006 at 10:13 am #4473

Anonymous

Inactive

Yes, it certainly is very scary. But we mom’s have to do whatever it takes to help our babies. I’m so glad you are taking the MARCI-kids information with you to the doctor.

Good luck and please let us know how the appt. goes and how your little guy is doing.

About the medication, I read that PPI’s only work on the actual cells in the stomach that produce acid, so the side effects are minimal. My doctor told me these drugs are very safe and non-toxic. Hope that makes you feel better at least about the PPI’s.

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