Concerned Father

[Anonymous]

Hi all! I am so glad I found this community. I have been reading the previous posts and already feel much, much better. Here’s our issue. I am trying very hard to balance my extreme type-A personality with natural child growth when it comes to my new born son’s acid reflux. The first week was great, and my wife and I were actually relieved that this new child raising thing wasn’t what we had built up in our minds. Then things changed. My wife is breast feeding and out of nowhere our son’s cry changed on night and the body action was clear he was in pain. The next day we were back at the pediatrician’s office where we were told he had Acid reflux and prescribed…. yup, you guessed it, Zantac. My wife’s diet has also changed dramatically and she has taken out all dairy and anything else we think may be an issue.

Our son has improved somewhat as I believe just our knowledge about his discomfort has caused us to be much more proactive.

My question is this. From what I read, we are very blessed to have what I assume is only a mild case. There is no spit-up, vomiting but only the occasional discomfort with arching back and Pavarotti like wailing.

We are scheduled to go back to the pediatrician on the 16th.

Do I let this all play out, continuing to do what we are now and hoping he will soon grow out of this, or do I move forward with contacting a specialist and getting some other things going.

Any and all advice here would be very much appreciated.

Thank you

[Anonymous]

Hi and welcome! So great to hear from a dad . So you have some intolerance issues? So do we, I attached a link below to our story and some gathered info. It sounds like your baby might be intolerant to other things besides milk? Perhaps your wife should try cutting out soy as well? If she wants to go further, eggs. Any food allergies in the family? If there are, I would also cut out all those foods. I can’t help much with medications, Reidun is on none. I’m sure many of the other parents on this board will be posting some good advice for you soon! Good luck and take care!!

https://www.infantreflux.org/forum/forum_posts.asp?TID=7728&a mp;a mp;PN=1

Heidi T.2007-4-2 14:42:9

[Anonymous]

Hello and welcome,

There are a ton of “experts” here on this site taht can be of help, but I will put my two cents in. Does your son still seem in pain? Brianna never had spit up, but ended up with pretty severe silent reflux and irritaion i her esophagus that only became better with a PPI. She actually didn’t really arch her back so much, but she just couldn’t sleep becuase of the pain. Also, a lot of time H2 blockers (Like Zantac) will work for a week or so and then stop being effective. If that is the case I would try a PPI. Most of the time a general Ped can prescribe the generic dose of PPI’s but if you still don’t have relief from that, then I would try the specialist route. That is what he did. Also, has your wife eliminated ALL dairy (including hidden dairy) and soy too? It wasn’t until I eliminated alal that that Brianna seemed to have true relief and slept much better.

[Anonymous]

Heidi, Thanks for the info. I think we need to look beyond the dairy. That is a good idea.

B’s Mom, What exactly is a PPI and pardon the lack of knowledge but if it is ‘hidden’ how do we know a dairy is in there?

I work from home and my wife is also at home. Just minutes ago, Joshua had an ‘episode’ and it just kills me to see him in so much pain. It is when I see this, when I want to get back on the phone with the Dr. but want to make sure we have done all we can here first.

[Anonymous]

you can go to marci-kids.com and read about medications. that is the midwest acid reflux childrens institute. they discuss how PPI;s are much more effective for infant reflux than h2 blockers. zantac never helped my son very much. though i did have to educate my doctor and show her all the research. he is also MSPI, and requires neocate formula, which is elemental.

[Anonymous]

i would make an appt with a specialist right now. it can takes months to get in sometimes. if you feel your ped is handling things fine, it is alot easier to cancel an appt. with a specialist than it is to get into one when your child is in pain and you are desperate.

if your son is in pain already—then the zantac is not working already. there is no waiting period for zantac to work. a PPI is a proton pump inhibitor such as prevacid. if the reflux goes on long enough not treated adequately, the esophagus will become inflamed, and by the time you get a PPI prescribed it can take several weeks for the inflamation to heal enough for your son to get any relief.

[Anonymous]

Not really an expert yet, but from recent experience, we waited to long to get him on prevacid. First, I thought it was something i ate making my baby so miserable and gasy, then I thought it was breast milk altogether so I stopped breast feeding, gave him lots of mylicon, and switched formulas. They put us on zantac and he got a little better, but we waited two miserable weeks before going back and just now we’re on prevacid. Hopefully we’re headed in the right direction. We just went to the pediatrician and they subscribed prevacid. I only wish we would have done this 2 weeks ago and maybe we all wouldn’t have been so miserable for the last few weeks. Good luck.

[Anonymous]

Depjcline, You just confirmed my suspicion exactly. We are going to call tomorrow and book another appointment. The Zantac and Mylicon just aren’t cutting it.

My question is this, and the reason for my original message. How do I know if this is a ‘bad case’ or just ‘normal.’ In my reading I am seeing that some babies vomit or spit up blood. Is this something that is coming down the road for us or is this something that just starts happening with severe cases of reflux?

Again, while my main concern is obviously my son’s health and easing his pain, I am also concerned about overstepping the natural bounds of child growth. I hope that makes sense.

[Anonymous]

Hello and welcome,

I’ve had two reflux babies and neither them really arched very much. My first refluxer was difficult to feed and could not sleep, and she was generally miserable most of the time, but it didn’t get that bad until she was 2.5 months old. She was a silent refluxer, meaning she did not spit up but she was in pain from acid backing up and burning her esophagus and throat. Zantac did nothing to help her which is a common theme around here.

My son also had reflux (not silent, he spit up alot). His main symptoms were chronic irritabilty, and extreme difficulty with feedings which progressed to refusing to eat altogether. He was treated with Prevacid (a PPI medication) and once he was on a high enough dose things turned aroudn for him.

My guess is that if your son does have reflux it will likely get worse. I don’t mean to be depressing, but that’s what happened with both of my babies. It started with mild symptoms but progressed until I knew something was seriously wrong. If you see his symptoms worsening I’d quickly try to get him onto a PPI medication since Zantac and other H2 Blockers rarely give lasting relief for infant reflux. You can read about these meds at http://www.marci-kids.com

Also be sure to check Laura’s intro (stickied in the Introduce Yourself forum). It has lots of valuable information which may help you.

As for hidden dairy, you really have to read the ingredients on everything, and I’d probably avoid soy and hidden soy as well until you get things worked out. You can read more about MSPI (milk soy protein intolerance) in Laura’s intro and also in the MSPI Forum. Many babies with reflux also have MSPI.

Good luck and glad you found us.

[Anonymous]

my son never really spit up much, but he has SEVERE gerd. to the point where he was almost placed on tube feeding before we got on prevacid because he was in so much pain from the acid destroying his esophogus, that he literally couldnt even eat. he would just take a few sips and scream. he was on the verge of a feeding aversion. so i guess what im saying is, you can have a bad case of reflux, without much spit up. there are also plenty of “happy spitters” ,who spit up tons, but it doesnt hurt them, so many times they dont even require any medications.

[Anonymous]

Hi Qman…welcome to you and your family.

I can relate to things going well and child rearing seeming like a breeze…Alana’s reflux didn’t realy hit us for about 6 weeks (incidently when she went from EBM to formula) and then the s&*t hit the fan. Alana was also not a spitter…she hardly ever spit. But she arched during feeding, wailed endlessly after feeding and would not let us lay her on her back. I think it is hard to really tell what is a mild to severe case when dealing with “silent reflux”, reflux where there is no extreme spitting. The fact your little on is arching suggests to me that the reflux is enough to bother him and damage could be occuring.

Zantac did provide us some relief in the initial weeks. The problem is it is very weight sensistive and the dose has to be adjust continually as the bub grows. Many Drs also don’t give the right dose…they can have up to 10mg per kilo of body weight. The other problem is that the system appears to desensitize to the Zantac and it becomes less effective even when the dose increases. Don’t get me wrong, its great to have it but it is not often the answer in my experience.

If he has reflux, most bubs don’t outgrow it for months (around 9 months is what we are told, but some have it much longer). Therefore I would go ahead and get a referral to a specialist. In the meantime I would get a script for a PPI. Once Alana was on Prevacid (Zoton in Aus) and the right dose (30mg at 4 months) she was a new baby. I realised it was not normal for bubs to be in discomfort, crying, wailing etc. Her development also took of once she was more comfortable. Most drs seem to underdose PPI meds so make sur eyou go to marci-kids and get some informationn (even print it out and take it to your appointment) if you are going to go down this path.

Many babies with reflux also have milk/soy protein intolerances. Alana appears to be intolerant (mucous in stools, irritability and pain) so we have her on a hypoallergenic formula. Its great your wife is breastfeeding and has ellimated dairy. As others suggested you might need to get rid of soy and hidden soy and dairy (ie this means that many foods have soy and dairy in them…like biscuits etc…so you will need to read all the ingredients). there are some great posts on this forum under elimination diet that will give you ideas on what to eat etc.

I think it is so wonderful that your wife and little on have such a proactive dad. That type A personality can work for you when it comes to reflux…because sometimes we need to educate these Drs about reflux and what our little ones need.

Goodluck.

[Anonymous]

Wow, ok, I think I have learned quite a bit in the last several hours. We will call our Dr. tomorrow and set up an appointment. I will be asking about a PPI, with printed sheets in hand. I will also discuss moving on to a specialist if we aren’t making any headway with the ped (getting the lingo down)

Thanks all. Updates to follow

[hellbennt]

hi there,

everyone has welcomed you w/ great infantreflux.org style!

I have a lot to say & it’s found ‘stickied’ (the top post) as ‘groupie Intro’ in the Introduce Yourself Forum (this post is in the ‘Help’ Forum)

glad you found us!

~laura

ps: babywearing

pps: it might just NOT be diet…it’s all so hard– but check out my post

[Anonymous]

So glad to see a dad on here. I don’t have any great advice. I think the other ladies have said it all. I just wanted say how great it is to have a dad on here.

[Anonymous]

Hi there! Welcome to the site. Like the others have said, it’s very nice to see a dad around here.

The purple post is from our forum moderator, Laura. She’s away on vacation, but I guess she’s as addicted as I am and is still logging on to help newbies! Here’s the link to her intro, which is very long, but full of TONS of great information!

https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1

I’m sorry to hear about what you’re going through with your son. I’m glad to hear that you still have your sense of humor through it all, though (“pavarotti-like wailing”, LOL!!!… sounds like your son and my daughter have something in common! Hailey used to wail with the best of them!)

I have a few thoughts on your situation. Firstly, I agree with the others: You can’t tell how severe the reflux is based on vomitting alone. In fact, often the worst cases are from silent reflux, because the esophagus gets exposed to the acid twice (once on the way up, and once when they swallow it back down). Hailey probably has one of the most severe cases around here, and hers is silent.

My daughter started off very fussy, screaming all the time, difficult to nurse, and then it quickly escalated to a full blown feeding aversion and feeding refusal. She arched all the time, which is called Sandifer’s syndrome and is a pain response to the acid burning the throat. We finally got her pain under control at 10 months old, but still had (and have) to deal with the lingering feeding aversion. You are lucky that you found this site before I did, and that you’re on the right track to finding help for your little one much earlier, so it’s doubtful that you’ll end up on this same path.

I would personally go for a PPI (proton pump inhibitor) as opposed to the zantac, based merely on the pain and symptoms that you’re talking about. The PPI is a stronger med, and will stop acid production for the most part, as well as actually heal any damage that is there. I know that other kids have directed you to http://www.marci-kids.com . That’s one of my favourite sites about meds etc. You will probably find that even if you do get on a PPI, most docs underdose, and dose WAY lower than what that site suggests. This is because few docs know about current research on dispensing such meds in infants as the research hasn’t really been well published at this point for the most part. When there’s feeding problems or obvious pain, I’m a big believer in dosing from a top down approach as opposed to a bottom up. What I mean by that, is to go with the highest dose possible, and then to move down to a lower dose later on when things have improved. Many docs like to do the opposite- start low, and then go up as needed. It took us months (from 2-10) to finally get to a decent dose, and at that point it was really too late.

If you do try a PPI, I would try to stay away from compounds, and try either zegerid (which is immediate release and can be given at any time without bothering about timing meals) or prevacid solutab, which is also good but needs to be given on an empty stomach with a meal 30 minutes later.

I would also get an appointment to a ped GI. In fact, if you tell us where you live, someone might be able to recommend a good doc who doses meds well. I don’t mean to sound like a med pusher, but when I hear about babies in so much pain, I think it’s better to get things under control fast.

It sounds like you’re already on a good path with the elimination diet. Welcome to the site again.

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