Riley's Story

** This is my original document that I sent via email.

Infant Reflux

May 2002

Greetings!

If you’ve received this article then chances are you are feeling a desperation that you have never experienced before! Let me first say that YOU ARE NOT ALONE! Many have been where you are now and although you don’t believe it, just as none of us believed it, IT WILL GET BETTER! So sit back, relax, and read through this article and understand that there are options and although it may take awhile to find the right combination for your child, you WILL get there eventually and again, believe it or not, you WILL have that happy baby you have always dreamed of!

Now, to introduce myself. My name is Karen  and last May my husband and I had our first child, a boy. Things were already a bit stressful before he even got here. I went into pre-term labor at 32 weeks. I spent a week in the hospital and a week at home on bedrest before he finally decided he couldn’t wait any longer. He was born a month early and spent a week in the Neonatal Intensive Care Unit. He was breathing fine on his own, but was having problems digesting his food. We finally got that going and were prepared to take him home when he developed jaundice. He had to stay a few days longer to remedy that and finally we were able to bring our new baby boy home. Life would now be grand right?? Wrong!

Why was he screaming all the time? Why would he NEVER sleep? Why was he so gassy? Why did he constantly keep his little legs drawn up in pain? Why did he arch his back all the time? Why did he spit-up so much?

I was seeing a lactation specialist and I was describing the symptoms to her. She picked up on it right away – REFLUX. Thus began a long process of working with the pediatrician and finally, working with a specialist, to handle this diagnosis for why my baby was always so miserable. It was a grueling process at times, but we stuck with it and eventually saw the light at the end of the tunnel.

The only basis for any of my information is "BEEN THERE AND DONE THAT". I’m not a doctor, so everything I know is from experience and my own research. So take everything here with a grain of salt. The purpose of this document is to simply say, "Hey, here’s what worked for us." And also to make everyone aware of a couple of products out there that we used with success.

I think the best way to start my article on Infant Reflux is to include my original post to a pediatric medicine board regarding my son and his symptoms.

July 4, 2001

"Hi, I am convinced my 6 wk. old baby boy has reflux. His symptoms and behavior even led me to believe that he possibly had pyloric stenosis, where the muscle between the stomach and intestine closes off the passageway, resulting in reflux.

He had a barium swallow x-ray yesterday that yielded no obvious problems, abnormalities or "immediate" reflux.

However, he fits all the descriptions of having reflux. Arching, stretching legs, turning head, taking three sips and screaming, taking a long time to eat, projectile vomiting, hiccups, throwing up with every bottle (sometimes when burped, 5 minutes later, up to an hour or more later), and so on. He can be sound asleep and then he will suddenly jar awake, scream and then throw up.

We are on our fifth formula - Nutramigen (expensive at $8 a day...). He is also on .6 ml of Zantac twice a day. We tried the rice cereal but that made the throwing up worse. The doctor does not plan on giving him any other medication at this point and has said to continue with Nutramigen and Zantac. This protocol is not working.

My problem is that he is still gaining weight and gaining weight nicely. This seems to be the indicator which determines whether further treatment is necessary. However, this doctor does not have to live with my baby 24 hours a day and listen to his blood-curdling screaming!

I am desperate, as I continue to read post after post regarding breathing difficulties ( he wheezes now )later on and worse things.

How do I convince the doctor that he has reflux if the barium swallow did not show "immediate" reflux?

Are there specialists for pediatric gastro problems? I'm thinking of videotaping my baby and showing that to the doctor and asking her to give me another explanation for the pain and screaming, if not reflux.

Sorry for the long post, but this is my first stop in trying to find more information. I would appreciate any help/advice that you can provide.

Thanks so much, Karen "

It’s amazing to read that original post – I can feel the desperation that I was in at that time! I felt so helpless. I just wanted my little newborn baby to live one day without agony! A little over a month after I posted this message, I got an email from a parent asking if we had made any progress. Here is the reply that I sent to her. ( Her comments are in bold. )

August 22, 2001

"Hi,

I'm so sorry to be so long in getting back to you. As you know, babies with reflux take lots and lots of time! I don't get much time to email.

[I have a 2 1/2 month old girl she has infant reflux and every bottle she will eat some stop and cry, eat some more stop and cry.. then most of the time after her bottle she will cry for the longest time she will arch her back, throw her head back, and get real stiff and just scream her little eyes out.]

The reason she cries while she is eating is that her throat is raw from the acid that refluxes into her throat. My son went through this and I just knew that something had to be hurting his mouth or his throat or something because he would be so hungry and mad, yet when he would take even one sip, he would scream. It was SO frustrating!

And he was forever arching his back as well. Again - PAIN.

[I have tried putting her on rice cereal with her milk, i have tried baby food with

her milk, I have tired Mylanta for children, Tylenol, I have tried holding her close to me real tight and that dont seem to help at all either.. it seems as everything i do wont help her any is that true?]

I know it seems like nothing will work but the trick is to find the right combination of things and unfortunately, it's just trial and error because every baby is different. My son is 3 months old and we have just now figured him out to some degree such that he is sleeping better, has a better disposition, eats really well, smiles - basically he's starting to act like a "normal" baby.

We tried every formula under the sun. One would make him extremely gassy. Another would make him vomit during the feedings. It went on and on. We finally ended up on Enfamil Nutramigen. A nice $8/can!! He was a can a day, and now a can doesn't even last an entire day, so it is very expensive. We kept trying new formulas for the gas - turns out the reason for the gas was not the formula and we could have changed a million times and never seen a difference. ( However, there would always be what I called a "honeymoon" period with each formula. For 2-3 days it seemed like everything was better and then everything would fall apart.)

My son had an Upper GI/Barium Swallow x-ray which indicated nothing but a possible narrowing between the stomach and lower intestine. It didn't show what they call "immediate" reflux when the formula immediately comes back up. Well I already knew his reflux happened after he ate. And then after having this test, the barium made him constipated and his bowel movements have not been the same since. He was having multiple ones a day and he's just now getting back to having one a day. He was having one every 4-5 days. It was awful.

My pediatrician prescribed Zantac. It neutralizes the acid in the stomach so it doesn't hurt as much when it comes back up. When we would give it to him he would scream. I think it was burning his already sore throat. And his worst spit-up times were immediately following the Zantac. After a complete meltdown one night I made the mommy-decision to take him off of it.

In the meantime, my pediatrician and I were at odds about what to do so I saw another doctor in the group. She officially took him off Zantac and prescribed Prilosec. This drug actually prevents the stomach from even making the acid. She also ordered him an apnea monitor ( monitors heartrate and breathing ) so he could sleep on his stomach which was the position he was most comfortable in. ( There is a scientific explanation for why this is the best position - but most peds say not to let them sleep on their stomachs because of SIDS, but while on the monitor, his heart rate and respirations are being monitored, so this allows him to sleep on his stomach. ) This new doctor also suggested he see a pediatric GI specialist.

Let me tell you - DO THIS IMMEDIATELY! Have your ped refer you to a specialist. Only then did we get on the right track.

The specialist agreed with the Prilosec instead of the Zantac and even upped the dosage. He also said for us to use Gaviscon instead of Mylicon drops. He also said that the Prilosec needed to be given in a chocolate-base liquid. This was quite an ordeal but I found a product online called Choco-Base and it is specially made for the Prilosec. Not only does the chocolate make it taste better but the Choco Base is formulated to make the Prilosec work better.

He also ordered an abdominal ultrasound which was negative for pyloric stenosis ( read about this online ), just as the xray was. So that was good. It showed that the stomach was slow to empty, which is ultimately my son's problem.

I had to make the decision of whether I was ok with the spit-up as long as he was comfortable or if I wanted to stop the spit-up. To stop the spit-up he would be put on Reglan. However, Reglan has a lot of side affects. So I opted to make him comfortable.

So that's when we got on the Prilosec and Chocobase/Gaviscon/Nutramigen routine. He also suggested that I try adding rice cereal to thicken the formula. My son CANNOT handle the rice. He gets fussy, extremely gassy, vomits more. We've tried it three times and it doesn't work for us.

Then we realized that now that he was able to eat more comfortably that he was hungry so the doctor said he could have 5-5.5 ounces of formula.

He said the gas was from the baby being irritable and crying and swallowing air and not from the formula so he had him stay on Nutramigen.

As I said, my son is now 3 months old and just within the last few days have we noticed a huge difference in him. I think we finally have him figured out as best you can with a baby with reflux. But it took 3 months of trial and error to get it right.

But again, the key is to SEE A SPECIALIST!!! They know more about reflux than the peds do. And please don't try anything on your own without first consulting a specialist. They will want to try things in a certain order or perhaps rule out any anatomical reasons for your baby's problems.

I hope I have helped you. OH! We also ordered him a [...] reflux wedge and sling that allows him to sleep on his stomach at an incline. This really helps when he spits up at night. Before while flat on his stomach he would wake up wheezy, now it's much better.

Please feel free to ask me any more questions. I'm just sorry I couldn't respond to you sooner because I understand the desperation you feel.

Good luck and let me know how it's going. I'll be glad to support you in any way I can. Us moms of reflux babies need to help each other stay sane!!!

Lots of luck,

Karen"

Even after this post in August we continued to make progress. By the time my son was four months old, we finally had a happy baby who even started sleeping through the night! It was a long struggle, but we finally found the right combination of things that worked for him. Here is a summary of my son’s "protocol", as I call it:

GI SPECIALIST - The first thing we did that got us on the road to recovery was to see a pediatric gastro-intestinal specialist. I feel like this was the critical first step in heading in the right direction. The specialist knew more about possible treatments than our pediatrician did. He was able to make a diagnosis faster as well. From the moment we walked into his office it was all progress from that point forward. If anyone who lives in the Atlanta, GA area would like more information on my son’s specialist, please let me know.  I *HIGHLY* recommend him.  ( Link to contact information for my son's specialist. )

PROCEDURES – Although my son had already had the barium-swallow x-ray before seeing the specialist, he ordered an abdominal ultrasound just to cover all the bases. Both the x-ray and the ultrasound were negative for any obvious defects. The final diagnosis was a "delayed emptying of the stomach", possibly due to a small narrowing in the tube between the stomach and the intestine. This was an important step in determining how to go forward.

DECISIONS – Once a diagnosis was made, the specialist presented me with a decision. He wanted to know if I wanted to stop the spit-up altogether or if I just wanted to make my son comfortable. He explained that the medicine for stopping the spit-up altogether could have it’s own side effects. I was not prepared for any "new" problems and basically told him that I didn’t care how many loads of laundry I had to do everyday that my main concern was keeping my baby from hurting. Once I made this decision, we moved forward on what to do.

MEDICINES – At this point we had already tried the Zantac with horrible results, so the specialist decided to put my son on Prilosec. He said that the Prilosec should be very tolerable with little or no side effects. The Prilosec would inhibit the stomach from making acid, so that when my son did spit-up, it would not be painful as it was before. The Prilosec is the same medicine given to adults. The pharmacist just breaks open the caplets and compounds the pellets and puts them in a liquid suspension. The specialist recommended that the Prilosec be given in a chocolate-flavored suspension. He felt that the chocolate flavor would be more palatable than the other flavors. Well, I called all over town and I could not find a pharmacy anywhere that had a chocolate-flavored suspension. The doctor suggested that I have the Prilosec put in a plain suspension and then mix it with a few drops of Hershey’s syrup! This proved to be very messy! I wasn’t sure of the best method to mix the chocolate and medicine. And if I traveled, I had to take a bottle of Hershey’s syrup with me! So I searched on the Internet to see if anyone had any suggestions. I found a wonderful product…

CHOCOBASE– My search on the Internet brought me to a website for ChocoBase. ChocoBase is a product that has been developed to aid in the administration of medicines such as Prilosec for infants and children or adults who have problems taking the pill form. The idea was that the Prilosec pellets would be compounded into the ChocoBase powder and that combination would be mixed with the liquid suspension. No more Hershey’s syrup! I contacted the specialist and he gave me the go ahead to try this product. I was fortunate that my best friend’s father was the pharmacist at our local drug store and he went to the website and downloaded the instructions on how to purchase the ChocoBase and how to compound it. But any pharmacist should be able to go to the website and register to purchase the product. If you live in the Atlanta, GA area and would like to contact the pharmacist about ordering ChocoBase, please let me know. We saw a noticeable improvement in my son when he started the Prilosec with Hershey’s syrup, but once he started the Prilosec with ChocoBase, it was almost an instant turnaround. The screaming stopped, the spitting up decreased significantly and the sleeping and smiling began! And when he did spit-up, it did not hurt him like it did before.

SLEEPING ON STOMACH – Even though the medicines were kicking in, my son still seemed most comfortable, and slept the longest, when on his stomach. Because of this, the pediatrician ordered an apnea monitor to monitor my son’s heartrate and respirations while he was sleeping. We were supposed to put him on the monitor every time he slept, but we eventually just hooked him up to it at night. We had our initial issues with the monitor and on occasion had horrifying false alarms that woke us up in the middle of the night ( the alarm siren is LOUD! ), but I cannot tell you what a relief it was going to bed at night knowing that if something went wrong that the monitor would trigger an alarm. Not only was the baby finally getting sleep, but so were we!! He stayed on the apnea monitor until he was 7 months old.

Since the Prilosec was not completely preventing my son from spitting-up, he would occasionally spit-up during the night. I would find him the next morning in a pool of spit-up and he would often be wheezing to some degree. I finally couldn’t take this anymore so I decided to purchase a product that I had ran across during my Internet research…

REFLUX WEDGE/SLING – When I first read about the Tucker wedge, I was hesitant to try it because it was SO expensive! But I finally decided that it was a necessity. The purpose of the wedge is to allow the baby to sleep on an incline. This position has been proven to be the most beneficial for babies with reflux. The wedge is simply that – a foam wedge. The Tucker sling fits over the wedge to hold the baby in place. It is basically a big Velcro diaper! This was a critical purchase for getting my baby to sleep through the night. Once he started sleeping on the wedge, if he had a burp/reflux during the night, it would not come all the way up and disturb him. And no more waking up wheezing! He would still have an occasional spit-up at night, but because he was on an incline he was usually able to sleep right through it. He slept on the wedge, on his stomach, hooked up to the apnea monitor. I believe the size we bought would support him until approximately 19 lbs., but we eventually had to take him off of it because he got too long for it! We were able to keep him on it until he was 6 months old.

OATMEAL – Another thing the specialist had us do was add rice cereal to his formula. The purpose of this was to thicken his formula to help it stay down better. Well, the rice cereal made him SO gassy and miserable, so we switched to oatmeal and that did the trick. We would add it to his morning and nighttime bottles. As soon as we added it to his nighttime bottle, we noticed that he would sleep even longer through the night.

FORMULA – We went through EVERY formula!! The pediatrician kept switching it thinking that the formula was making him gassy. The specialist explained that it was not the formula making him gassy, it was all the crying he was doing because he was so uncomfortable. However, he did recommend that we stay on Nutramigen. It is broken down further than regular formula so it makes it easier for the baby to digest. He stayed on Nutramigen until he was about 8 months old and then we went to Similac with Iron without any trouble.

GAVISCON FOR GAS – We had been using Mylicon drops for the gas and eventually got a prescription from the pediatrician for something more powerful, but it didn’t help at all. Then when the specialist explained the cause of the gas – the crying – he suggested that we give him Gaviscon as needed, but predicted that it would eventually no longer be necessary. He was right! We were able to decrease the Gaviscon over time and eventually gave it up altogether. Gaviscon is available at the drugstore in the antacid section. It really helped with the gas.  NEW! - I finally found the doctor's original notes regarding the amount of Gaviscon to use.  His notes say, "Gaviscon ES 0.6 cc before feeds 6x".  So apparently we were to give him 0.6 cc before each feeding, up to 6 times a day.  I seem to recall some cases in which we gave him up to 1 ml, but only when he was in a lot of pain in the beginning.  DISCLAIMER:  This is the regular adult Gaviscon, so as with any medicine, please consult with your doctor on the proper dosage for your child!

HUGS, HUGS and MORE HUGS! – I sort of listed these items in order of importance in my opinion, but this one should really go first!! We held my son for hours on end. We picked him up when he cried and consoled him. We rocked him. We walked him. We held him. We never let him "cry it out". My mother and grandmother cited references to my husband (who thought my son was going to be spoiled) which indicated that a baby less than 6 months old could not be spoiled. (And besides, he would have been spoiled anyways…. ) I’ve read several articles that suggest that the baby just has to "cry it out". My feeling was that if my baby was crying, then something was hurting. So we did everything we could to let him know that we were there and it was going to be all right. We read that babies that were held more were happier later on. Well, let me tell you, it worked! We have the HAPPIEST baby! People comment all the time about how happy he is. You can’t imagine how proud that makes me feel. I feel proud because we worked really hard to enable him to be a happy baby. So I know all the hard work was worth it.

I don’t mean to suggest that this is the perfect plan for everyone. Every baby is different and what works for one may not work for another. I just want to let everyone know what worked for us in case all or part of my son’s plan may help others. And again, I want to stress, please don’t try any of this without consulting a specialist first. The specialist will want to try things in a certain order or perhaps rule out any anatomical reasons for your baby's problems

Our baby just turned 1 year old a couple of weeks ago. He has not outgrown his reflux completely yet, but now that he is upright more often, it's not as bad. Solid foods helped a little, but walking has helped the most. Learning to crawl was a difficult phase because he spent so much time on his stomach. Difficult only in the sense that he spit-up more, but he was always comfortable. He has been off of Prilosec for about a month now. However, we have used it intermittently while he’s been teething. All the chewing on whatever he could find would tend to make him spit up sometimes.

Looking back, I realize that he was about 4 months old when everything finally fell into place. He was 2 months old before we saw the specialist, so we got a late start. But even by the time he was 3 months old, things were already better. In his journal, he was 3 months old when I wrote, "He is really starting to do better. He is sleeping longer, sleeps after he eats, sits in his swing and falls asleep. It’s just great finally!" So just be patient and find a good specialist to work with and you will get there.

I hope you will find this article to be beneficial to you. If you have any additional questions, please feel free to ask!! I would be glad to help in any way that I can. Below you will find the website addresses for the products I mentioned.

Hang in there and best wishes to you all for a happy, healthy baby!

Karen

ChocoBase

www.chocobase.com

www.diagnosishealth.com (Click on Pediatric Medicine)

** Riley's Timeline**

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