Tuesday, June 1, 2010

The wondeful world of reflux

If you've never had a child with reflux you are lucky. The illness, disease, disorder, whatever you want to call it, is all-encompassing. 

My youngest was born with silent reflux. It took us 4 months to figure out what was going on and he was already 5 and a half months old when we managed to get it somewhat under control. Only after a year old, and many adjustments to his medication, did we get a handle on it. 

The symptoms of silent reflux vary.  His were the following: He started coughing the 3rd day of life. It was nothing serious, just a little cough.  He lost his voice at 2 weeks old. Weird, right.  He would arch his back during feedings. It got so bad that by 3 months old he could only manage to drink 1 to 2 oz at a time and then would cry and arch back.  Every time I'd lay him down he'd wake up and cry. I didn't sleep for 5 months because he was up every 20 minutes.  By 4.5 months he wouldn't eat practically the entire day and then would eat all night. No he did not switch his days and nights, some reflux babies will stop eating during the day because of the pain and then dream feed because they are hungry and sleeping so they don't register it as much.  He still had his 1 to 2 oz issue and was up all night.  He was constipated even though he was exclusively breastfed.  He'd go 8 to 10 days without a bowel movement. When he did poop it was full of mucus. He was stuffed up from his first week of life until we got him on the right meds and had serious bronchial infections 3 times before he hit 5 months old.

Needless to say, I didn't sleep for almost a year. It was hard, especially since I have another child.  We did manage larger stretches of sleep by stacking books under the foot of his crib and having it at a 30 degree angle. He also slept on his stomach and used a pacie. It helped.  We tried every kind of meds until he finally got on omeprazole (prilosec). 

Do not trust the resuspended version. Since he was 5 months the Ped GI wouldn't let me give him the capsules (you open them and give them on a bit of apple sauce). It helped but depended on the batch. Some were good, some where bad.  The suspension can go bad even in the fridge. You can't travel with it.  It was a nightmare.  After a failed attempt to wean him at 1 yr, we switched to the capsules. My life changed dramatically.

My son ate and he ate well! He started napping and sleeping better at night. Of course better at night meant only waking up 2 to 3 times as apposed to 6 or 7.  He also had some major issues putting himself to sleep because he had bad sleep associations. Of course, I had to go in to him.  I had to put him down every night. He needed Mommy to sleep.  He was in pain most of the time.

Long story short... too late I know.

He's doing much better now! He's 17 months and we've weaned him down to 10mg only at night.  He was previously taking 10 mg in the morning and 10 mg at night. 

So this all comes up because we are weaning off the night dose. Scary stuff! He's finally sleeping well and I hate to mess with that. Of course, I have even more the fact that he's on these strong meds.  So we've halved the night dose. We're on day two and he's doing very well.  We'll see how it goes. I'm going to do a half dose for a week and then drop it completely.  I'll let you know how it goes!

Btw, we have also made dietary changes.  It's just as, if not more, important than medication.


  1. Oh I feel for you. My nephew (so my sister was in your shoes) had problems with reflux. Though not to the extent that you explained and it has resolved itself now. But it's so hard to watch a little person that you love so much in pain and feel powerless to help. I hope for both your sake that it goes well and you can sleep happy and healthy!

  2. Oh dear, good luck for you! Isa had refluz her first 3 months but then it passed. It was very impressing with my nephew, mostly bc he had a twin brother and you'd see Lucas growing fatter and healthier while Dani would always be smaller and much thinner. It took them forever as well, very strong meds, she had a 2,5 yr-old when the twins were born, so talk about not sleeping at night. Thankfully she had help, otherwise she might as well have been in a nuthouse by now. Daniel is 4 yrs old now and is super well, as big as his bro and it's all water over the bridge. Point being: consider that it could always have been worse (Rafa could have a twin) but eventually it gets better. Keep us updated on how it goes.

  3. We have given up. He was reacting, completely stopped sleeping (including naps), was cranky, and barely eating. So sad. We're going to give him another couple months, see the ped GI again, and try again. Fingers crossed...

  4. Geeze, I can't imagine what a struggle this has been. Poor little thing, poor you. I'm sure it will pass, you're doing all you can!