1 Month Newborn with a Floppy Epiglottis & Reflux

My son was diagnosed with a floppy epiglottis and severe reflux just after birth, he is now 6 years old. I am not going to make this road we have been down sound rosy, but I will say our son is thriving and continues to grow, Though slightly under weight at times. Some tips we wish we were told about much earlier than we were was to use thick-it instant healthcare food thickener in your child's bottle. I tried nursing which lead to aspiration so I pumped for 5 month putting rice clerical in bottle which caused constipation. Finally a speech therapist told us about thick-it. It is used with stroke victims and works miracles concerning aiding in swallowing without side affects. Prevacid dissolved in water did eventually help. We had a cookie swallow done from an eating clinic every 3 months to see if his epiglottis was functioning correctly. We were assured this condition was a developmental problem and he would grow out of it. I thickened his food until age 2 and 1/2, pureeing all food. Baby food stage one was not thick enough. We also learned about "gripe water" to help settle his stomach. This is all natural and I purchased it through I-herb.com, this definitely helped with those screaming/ crying in pain nights. I suggest working with a speech therapist right away and an eating clinic. I have a close friend who is a speech therapist who has helped our family through this extremely challenging diagnosis. Our son is now an extremely picky eater with a lot of food aversions however he is with us and happy. I did a lot of praying through his infancy. I will do the same for you! Don't let doctors poo poo what your gut tells you is not right/ normal!

Dear SS, my sister's little boy had terrible reflux when he was born. She didn't breastfeed so the Dr. told her to put a little cereal in every bottle to help keep the bottles down. It did help but the baby was uncomfortable at times and he did out grow it by the time he was 6 months old. Check with your Doctor about the cereal idea and good luck.

Hi there! My 2 month-old was also diagnosed with the floppy airway thing. I demanded Prevacid right then and there, because reflux and the airway condition feed on each other in a vicious cycle. My older child had reflux very bad that was caught late, and the Prevacid made an INCREDIBLE difference. You should know that the Prevacid takes a few days to take effect, and it won't cut down on everything completely but *does* make a difference. And yes, the reflux will eventually resolve - my son's at around 10 months/a year - as will, I think the floppy airway. My daughter's got worse, and now is better though she does have her episodes.

Let me know if you need a new ENT. I like ours. She did the endoscopy in her office and thought my daughter was borderline surgical, but took a wait-and-see approach -- that was warranted. It sounds like your little guy may need a little more intervention, but it is somewhat common to have babies breathe a little strangely the first few weeks, and reflux is *definitely* very common! If there's anything I can do to help ease your fears or come up with ideas, or just support you in a scary time, please e-mail me. :)

Hi. I wanted to first congratulate you! I am sure you feel very overwhelmed with being a new mom, etc. I felt the same way.

I have a 3 month old with reflux. He screamed for the first month non stop. He would skirm and cry during feedings. It was so painful to watch. It is horrible, so I feel your pain. We would take car rides, bounce him, but sometimes nothing worked. However, what I can say is that with time it does get better. I know it is easier said than done.

My son is also on Prevacid and it seems to be helping, but it isn't a complete cure. They do say give the Prevacid 2 weeks before seeing any results. How long has your son been on it?

My son has been on the Prevacid for about a month. He first started off with a third of the pill, but it wasn't working enough. Our pediatrician recommended going to a pediatric gastro doctor b/c she didn't want to increase the medication without a specialist looking at him. Good news... Peyton is healthy little boy, but just has reflux. I know... just reflux which can be very painful for the baby and for the parents (more for the parents).

The gastro doctor increased our dosage, so he is now on a half of a pill per day. Like I said, I do see differences and feel he is better, but he still skirms during feedings. No crying though. The crying is 80% better.

The mylicon didn't help us at all either. The stuff doesn't work for babies with extreme reflux. Have you tried buying gripe water? We tried it, but Peyton has bad gag reflux, so he threw it up. A lot of people swear by it. You can get it at speciality stores or pharmacy's. I know Whole Foods carries it.

I am not breast feeding.. it didn't work for me, so our pediatrican recommended putting rice cereal in his bottle combined with the formula. We haven't tried it since he is much better.

I do believe he is much better b/c he is getting older and his tummy is getting stronger. Also, they say to keep your baby up right for 30 minutes after eating so they can digest the food. We do this and it seems to help too. I know in the middle of the night this isn't ideal, so try staying up with him for half of the time. This way when you put him down, the milk isn't coming up on him.

It is also really important to make sure they burp a ton. I burp Peyton after every once, but with breast feeding I know you burp after he is finished. Maybe try burping him more during the feeding.

I hope this helps and let me know if you have any questions.

-B.

My sister's baby boy has had a similar problem - he has tons of gas and he always seems really uncomfortable (poor little guy!). She started with Mylicon drops and they helped but didn't solve the problem, so now he's on baby Prevacid and it has helped quite a bit, but he still gets really bad gas. She can't breast feed, so she also switched his formula to a soy formula and that has helped tremendously too. Sorry it's not really an answer for you, but just wanted to let you know that your little guy is not alone and it will get better- and I'm really glad you are pushing your doctors to get answers - sometimes they make you feel like a number! Good luck to you and your son!

Hi
Congrats! I'm not sure where you are taking him to the doctor but I do recommend childrens memorial Hospital where they do specialize in children with different conditions.I really think you will get some relief and closure as to how to handle what wrong with him. If your not satified with what the pediatrician tells you and he is still experiencing some discomfort.There emergency room is always very attentive because he is to young to have continuence of discomfort when he eats.
Childrens Memorial
2300 childrens Plaza
Fullerton and Halsted
###-###-####
This is where I take all my children if anything is wrong minor or big

I'm so sorry you've had such a hard time with your new baby :( I hope he's well soon. I don't have any advice about the breathing, heart, etc. However, I might have some helpful suggestions for feeding. First, try and keep your baby's meals small if he's spitting it all up. Second, since his meals are small, you will probably want to feed a couple times in a row off a single breast before switching to the other. This will help him get that good fatty hind milk. Third, make sure he stays upright after a meal, so in a bouncy seat, car seat, or swing.

Good luck! I hope he's stronger soon.