Reflux sucks!

Since Elijah was born, he spit up.  A lot.  He was also a very fussy baby, and hated to lay flat (on his back or belly).  He frequently spit up in his sleep, which scared the hell out of me!  He arched his back while nursing, and even in between feedings.  He only wanted to be held upright.  He was constantly rubbing his face and eyes (which I later learned is also a symptom of AR).  He ate small amounts every two hours.  He also frequently had choking episodes, where he would gag/choke on his own spit up, and cry out in pain.  I started wondering if there was something wrong, and after doing some research and talking to other mama's, I came to the conclusion that he has Acid Reflux.

So at his 2 month well check I asked his pediatrician about it.  I said that he spits up a lot, then I was cut off and told this: "Babies spit up."  She also told me that since he's gaining weight just fine (he is a chunker!) that there was nothing to worry about.  Then I was given a piece of paper with (very little) information about AR.  I didn't even get to explain all of his other symptoms before the dr rushed out of the room to see her next patient. 

I was beyond frustrated, since I had already been doing what this sheet of paper recommended.  He already slept on an incline.  I started that when he started spitting up in his sleep.  I already held him upright for 30 minutes after nursing him.  It was then that I decided to find a new doctor for my boys.

I waited until his 4 month well check, though I wish I had taken him in sooner.  His new doctor actually listened to my concerns, and he was officially diagnosed with AR.  She prescribed Zantac, twice a day.  I didn't know much about the reflux medications, so I said okay.  When I got home I started doing some research.  On http://www.babycenter.com/ I found a group for parents of children with AR (The Reflux Rebels: dealing with the other colic-Reflux, MSPI, and other GI issues).  There I found a wonderful support system of moms who have been there/done that.  I learned so much about AR, and just how serious it is.  I found that Elijah has it easy compared to some of these babies.  I even learned the story about a young baby, not even three months old, who became a little angel this past December.  He had severe reflux, delayed gastric emptying, and hypotonia, which caused him to choke from his reflux.  His name was Casey.  His story has touched many hearts, including mine. 

Sadly, most doctors, even GI's, aren't acknowledging that GERD (Gastroeshophageal Reflux Disease) is a real issue.  A lot of babies are diagnosed with "colic".  Or the parents are told that the infant will grow out of it, and there's not much that we can do, excpet deal with it.  I was told that by Elijah's former pedi.  I didn't listen, though, because I knew he was in pain, and that wasn't normal.  If he was in pain, there was a reason, and we needed to do something about it.  GERD can have serious, long term side effects if left untreated.  I wasn't about to let that happen.

In my research, and advice from other mama's on the RR board, I learned that most babies build up an intolerance to Zantac within 7-10 days.  The mama's also told me that the dr would most likely prescribe a low dose of Prevacid compound or Prevacid Solutabs.  They also mentioned that this may not work, either.  Well, at first I thought, whatever, I'll listen to their advice, but go with my doctor for now.  Maybe Elijah will react differently.  I was open to their advice, but also a little guarded since I didn't actually know these people on the internet.

Well, sure enough, around day 8, the Zantac quit working.  It did control the amount of spit up, but not the pain.  So back to the doctor we went.  And guess what?  He was prescribed Prevacid Solutabs, at about 1/2 the dose he should be on for his weight (though the dr did say we could up the dose if needed).  Because the Zantac did control the spit up, in 2 weeks he actually gained over a pound, as well as grew about 1/2"!  I thought, how big would he be if he hadn't been spitting up so much to this point?!  I did some research on this med, and learned that it can take up to 2 weeks to really start working.  I also read that some babies develop insomnia, and that it can suppress their appetitie.  The first week was pure hell!  His reflux came back full force.  I thought, did I do the right thing?  At least he was a little better on the Zantac.  But I stuck with the Solutabs.  The second week was better than the first, but he started waking up in the middle of the night screaming, which is very unusual for him.  Usually he'll nurse, then go right back to sleep.  Also, he started nursing even less. 

Last Friday was the worst day.  He screamed for about 4.5 hours straight.  There was no consoling him.  I had already called his doctor to make an appointment to discuss the dose of his medication, but the appointment wasn't until Monday.  I was sleep deprived, since he hadn't been sleeping well all week.  Of course, Riley decided not to take a nap that day, either.  I called the doctor back to see if they could work him in somehow, but I forgot they close early on Friday, so I was out of luck.  I made it to CVS to try to find Mylanta Cherry Supreme, but I couldn't give it to him within 4 hours of his regular meds.  I think that is a miracle drug!  I gave him some about 1:00, after which he cried himself to sleep on the living room floor.  He didn't even want to be held.  When he woke up about 40 minutes later, he was a whole new baby!  He smiled for the first time that day.  I knew his reflux was still flaring up, but not as bad as earlier that day.

We made it through the weekend, and to our appt on Monday.  He actually lost a couple ounces, and grew about 1/2" in the last 3 weeks.  Turns out Elijah has an ear infection, which was caused either by the mild congestion he developed or the reflux, or a combination.  Since congestion is also a symptom of reflux, I'm guessing it all comes back to AR.  He got a shot of antibiotics for the ear infection.

We discussed changing his meds vs upping his dose of Solutabs.  The dr really wanted to max out his dose before trying a new medicine, so she doubled his it.  So far, it's only been a few days, but I'm not sure it's helping.  He's still having reflux flares.  It sucks not being able to do much when he's in pain.  I would love to switch his medicine, but since we're going on vacation in a couple weeks, I don't want to do anything that might make him worse.  So for now, we will tolerate this medicine.  Solutabs is no longer a preferred script with our insurance, which makes it more expensive than it already was.  They also won't cover the prescribed dose.  The doctor said to give him what she prescribed for now, and we'll re-evaluate in a couple weeks, and deal with the insurance if needed.

But when we get home from our vacation, I plan on ordering Buffer Babies (http://www.refluxsolutions.com/).  BB is a way to make OTC Prevacid or Prilosec into a form for infants.  It does not need a prescription, and also is an affordable option.  I will discuss it with my doctor, of course, and let her do her own research on it.  I've heard so many wonderful stories of BB helping reflux babies when nothing else would.  I was at first very leery about it, but I've done my research.  I believe this may possibly be the answer to helping Elijah feel like a happy baby.  That's all I want!  I've spent too many times crying with him when he screamed in pain.

Basically, it all boils down to this:  Reflux sucks.  I hope that one day very soon the medical community will understand that it is something very serious, and there's no reason for babies to have to deal with the pain.  There's no reason for babies to die because of it.  There's no reason for parents to be stressed out because their child's doctor won't listen to them, or help them. 

If you suspect your child may possibly have reflux, or any milk protein intolerances, please do your research and trust your gut!  You are your child's best advocate!  I am thankful that I have a doctor that is willing to listen and try to help my little one.  I think it's important to balance your intuition as a parent, your trusted doctor's expertise, your research, and also advice from other parents who have been through a similar situation.

If you want more info on relfux, please go to the following websites.  They helped me out tremondously to understand everything reflux related, including the different medications for it.  I'm sure there is a lot of info out there, but these are what have helped me the most.

http://www.marci-kids.com/ (Midwest Acid Reflux Children's Institute)

http://www.refluxrebels.com/ (Reflux Rebels)

http://www.refluxsolutions.com/ (a brand new site with more information about Baby Buffers)