Are all neuros nuts?! Development delays Reflux

[Anonymous]

This is my first time to the forum, so any advice or instruction (links to other areas I have missed) will be appreciated. Apologies in advance if I don’t do this right. This is also somewhat long.

Our little guy has developmental delays that we ascribe to his undiagnosed GERD. Our first son had colic, so we just thought babies cried, but Dan’s cries were different–more like screams–but no spit-up, so we didn’t know what it was. For nearly 4 months our pediatrician told us “all babies have reflux” before I blew a gasket and demanded Zantac. It worked great, but then stopped 3 weeks later. (I have learned from this forum that this is typical, but our doctor sure didn’t warn us.) Dan is now on Prevacid 7.5 mg am and pm (he is huge–97 percentile, 20 lbs). Nobody told us it would take 2 weeks to kick in and we were explicitly told to stop the Zantac first. Gee, I wish I’d read this forum before following the pediatrician’s advice because those first weeks were hell again.

Dan has developmental delays. He spent the first 4 months of his life throwing his head back, arching his chest dramatically, and screaming a lot. He has “hypotonia” or low muscle tone in neck/shoulder area. His eyes–while anatomically intact–aren’t working right. However, his MRI and EMG are normal. We’ve started PT and OT.

So I’m writing because two pediatric neurologists and one pediatric GI have told us that the reflux “couldn’t possibly” be causing his delays (I know, I know, the arrogance). However, since Dan has been on medication, his pace of development has improved markedly. In one month, he has gone from little tracking to tracking, from little eye contact to fairly frequent. He is holding his head up better. He is trying to use his arms. To us, his parents, it seems pretty obvious that the reflux is the main culprit here. Has anyone else here experienced substantial developmental delays due to reflux? Did your doctors (neuro/GI) concur? Is your little one catching up now on milestones, so long as there’s medication of the reflux?

Also, Dan still has once-a-day breakthrough attacks even with the big dose of Prevacid. Mylanta supreme only give relief after the fact. GI said “Let’s switch to Prilosec.” But isn’t that just another PPI. If one doesn’t work 100%, why would another? Also, I don’t like the feeling of trial-and-error medicine. Isn’t there a better way? (For the record, she didn’t recommend a pH probe, scope, or any other diagnostic, just a medicine switch.)

Sometimes I feel like the doctors look at Dan–a huge chubby baby–and think he couldn’t possibly have the bad reflux I describe. They don’t know that I practically force-fed him on a fixed schedule around the clock during those first 4 months b/c he was sleeping waaay too much and not doing well. Ugh.

Any help on the developmental delays topic especially would be helpful.
-Elizabeth
___________
mother of Daniel (11-10-2010)
GERD, 5 months old, 20 lbs, Prevacid 7.5 ml x2 per day

[hellbennt]

you are not wrong!

you are the mama and you KNOW!!!!!

arg to these drs!!!

research all you can here….

flying out the door…

[Anonymous]

I’m going through the same thing with our pedi. Our 2 month old son is huge (13 lbs 13 oz about 2 weeks ago). I started calling at 2 weeks when he was screaming in pain, arching his back, and gagging. He never spits up though. She keeps telling me that “all babies have reflux” and it’s “normal” until he’s 3 months old. She told me to just hold him upright for 30 minutes after he ate. I’ve done that, and it hasn’t worked. This kid never sleeps and I swear I’m wearing a path through our living room and kitchen from constantly pacing trying to keep him from crying. We bought an exercise ball to bounce on which has been working, sort of. Our pedi finally gave us Zantac two weeks ago, against her beliefs. She told me it was normal through the appt but, since he screamed the entire time we were there and did started gagging she said “I’ll give you Zantac because maybe it does hurt him.” She also told us to switch to Alimentum. She won’t run any tests or anything. It’s extremely frustrating and he and I have cried together a lot, especially this last week.

I have tried putting him down for tummy time every day in several different positions and places, and he just screams and refuses to pick his head up.

[hellbennt]

heather, give me his current weight & I will help you calculate the highest dose of zantac for him. I doubt your ped gave a proper dose…

[Author]

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