Thank Goodness You're Here!

[Anonymous]

I have never been so happy in my LIFE as I am to have found this site!!!

I’m just going to lay it all out (what we’ve been told and what we’re doing) and hope that you all, in your experiences, can tell us which way is up and where to start!

We were first told “reflux” after my son stopped breathing and had to be revived. The peds dr. put him on prevacid 7.5 mg solutabs at the time. Less than a week later we had some pretty powerful puking going on so they did an UGI which, of course, showed the reflux in all it’s glory. It was then that we were told to thicken his formula with a tsp of rice cereal per oz., raise the head of the mattress and hold him upright after feedings. We’ve changed formula’s repeatedly (right now we’re on Similac Isomil and up to 15 mg of the solutabs once a day. We’ll have two days or so of relative peace…and then the screaming starts. His feeding has never increased past 3.5 oz of formula every 3 hours during the day. He just won’t eat any more than that. He goes rigid, sticks his feet straight out and screams…and it breaks my heart. He’ll have about 4 days of that before we cycle back to having a couple good days. I feel so completely clueless about all of this and my dr’s don’t seem to think it’s a big deal. Of course, he never seems to scream like that when we’re at the dr’s. I just feel like since he’s gaining weight so well (he was 4lbs 10 to start and is 12lbs 4 at 4 months) they brush aside all of it as something not to worry about. It’s hard to not worry about it when your baby has tears running down his cheeks and is shaking his little fists at you.

Sorry for sounding so desperate…but I am! LOL It’s like Heaven knowing there are people out there who might be able to give us some ideas!! Thanks!

[Anonymous]

Your story sounds similar to my son expect his weight gain has always been slow. At five months he is about 13 15lbs (he was born at 8 2lbs). His feeding over the past couple of weeks has gotten horrible. We put him on the prevacid solutabs for 10 days and throughout that everything went horrible – he would only feed over night and sleepy. The daytime feeds have almost disappeared. He is only in the 10th percentile so I am really worried his intake is not even enough to keep him hydrated. He is off prevacid and back on Zantac but every day gets worse. I so so scared about where this is heading. I have no ideas for you because nothing I have tried has worked. All I can offer is support that you are not alone and know how awful this can be.

Adam

[Anonymous]

Hi Missy,

I read both of your posts. It’s amazing how reading other peoples’ experiences can remind you of how horrible those days were. I really feel for you. My daughter also struggled greatly with reflux, especially around 4 months. I hope your doctor told you that 4 – 6 months is the peak of reflux where it is at it’s worst. That was pretty true in our experience.

We also tried thickening and other formulas. It really is hard to find the right combination that will work for your son but you will find it. What really helped us was splitting the prevacid dose, especially as far as sleep was concerned. We gave Gabby 7.5mg in the AM and 7.5mg before her bedtime bottle. Also, are you giving the meds on an empty stomach? The general rule is you can give the meds 2 hours after a feeding and you have to wait a 1/2 hour – an hour to feed after you administer them.

I know right now this feels like it will last forever but it won’t. At 12 months, I noticed a big turn around and now at 16 months we are beginning to wean from her meds. I really hope you find the magic combination of meds, thickening, formula, etc soon. Feel free to PM if you have any questions. Good luck!

GabbysMom2007-12-03 14:58:48

[hellbennt]

hi & welcome!

I have a LOT to say & (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

so glad you found us!

~laura

[Anonymous]

I have a few questions/suggestions:

Are you giving the prevacid on an empty stomach followed by a feeding 30-60 min later? This is very important. Also how long has he been on it, it can take 2 weeks for it to take effect. Also we tried soy for 4 weeks before switching to Nutramigen (Alimentum is the same thing) which made all the difference along with the right dose of meds. Many babies with reflux also have MSPI (Milk/soy protein intolerance) so another formula switch may make things better. Also we live by gas drops in this house… not so much anymore, but still with every bottle and before naps and bedtime… just in case. Cherry Mylanta Supreme may help as well, but can cause loose stools so be for warned. Cereal didn’t help us any as he couldn’t tolerate any grains until I believe 8 months, so the cereal may be exacerbating the issue. Just a few thoughts. HTH.

[Anonymous]

Hi Missy! Glad you found the site. Your son is probably on a good conservative dose of PPI for his weight, but some babies seem to need higher dosing or more frequent dosing to keep their acid under control. You may want to check out http://www.marci-kids.com. They’ve done some research on dosing in infants and advocate for higher frequent dosing. My daughter was one of the babies who never did well on conservative doses of PPI. She needed a higher dose, for her at least 30mg a day in 2-3 doses. The other thing is to make sure that you’re giving the solutabs correctly- on an empty stomach and followed up with a meal 30 minutes later. The arching and the stiffening etc sounds a lot like Sandifer’s syndrome- a neurological pain response from the reflux. My dd had it so badly that they were concerned about seizures (which were ruled out by a normal EEG). I would say that if he’s having those symptoms then the pain probably isn’t well controlled. Maybe you can print off some info to show your doc, and see if he’ll let you try a higher dose.

Good luck.

[Anonymous]

Thank you all so much for your responses!! I found I could relax just a little bit knowing that we’re not alone in this!

I will admit that I’ve not been as good about waiting the 30 minutes as I should be…but after doing A LOT of reading on here I decided that if I can handle hours of screaming because of the pain…I can handle 30 minutes because he thinks it’s time to eat as soon as something touches his mouth!

I did check out marci kids and put his weight and age through the dosing calculator and am going by that dosing now. He’s been on the prevacid for two months already, but he seemed to like the smaller amount more often better. Who woulda guessed?!?! I’m not having to fight him to take it now.

The biggest help I found so far is that when we go for his 4 month well-baby visit I’ll be telling the ped. that I want a referral to a peds gastro so we can be working with someone who knows what’s going on. I like his ped…but she doesn’t specialize in stomachs. He has a pulmonologist…might as well toss on a gastroenterologist too! LOL

Thank you all again! What a relief to have a resource to come to when I find myself looking at him and thinking “You’d think I’d never had a baby before for all the ‘I don’t know’ I do with him!”

[Author]

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