Posted By Posting
Jun 24, 2009
hawkeyelynn
HawkeyeLynn, mom to a baby boy with GERD
I'll take any advice I can get - I'm new at this!
Hi fellow parents, I'm a little new at this, but I can see from some of the posts I've had time to read that you are all a caring and concerned bunch of people, so I'm hoping you can help me. My almost 8-month-old son is now taking Axid (7cc/day) and Prevacid (15 mg/day) after an upper GI on Monday revealed "intermittent reflux" (he only drank an ounce of the barium, but we could totally see the refluxing). Alex was 9 pounds, 12 ounces at birth, and almost from the beginning would scream his head off for an hour or two every night. He would then sleep 5-6 hours at a stretch...this went on for the first 4 months. He gained weight very steadily, and was otherwise happy except for his nightly episodes. At his 4-month check-up, I asked if there could be any digestive issues going on because he spit up a lot and seemed to want to nurse around the clock. The pediatrician advised us to start solids because he had increased calorie needs from being such a big boy (we had wanted to wait until 6 months, which worked really well for our now 27-month-old), so we did, but he screamed the whole time because he didn't "get it." His sleeping deteriorated at night, and I began to feel like the human cow. We waited a few weeks and tried again with the solids - it went a little better, but it took until about 5.5 months for him to really want to eat the solids. His sleeping never improved, and his weight gain really slowed down. When things just didn't seem right/he wasn't himself, I took him to the doctor and asked if there could be some digestive issues going on (because he was also always very gassy and burpy), but was told he had an ear infection. Since it was his first one, I supposed his behavior could be explained by ear pain. After his ear was clear, the other symptoms didn't go away, and then he got another ear infection. Finally, at his 6-month check-up, I armed myself with information (from this website) and told the doctor that I thought he had reflux. She seemed skeptical but said it would be easy to "prove" by medicating him. Alex responded really well initially to the Axid, and was like a different kid. We even started sleep training him (since we knew he had some bad habits from his painful wake-ups), and he responded to that. But, that was short-lived...he started spitting up again, then vomiting, then refusing to eat fruit, then vegetables, then his favorite cereal. I have been concerned about his weight gain (because it has really slowed down the past 4 months), but the doctors don't think it's a big deal that he dropped from 95th percentile to 50th percentile in that span of time (he weighs about 20 pounds now and is 30 inches long). His Axid dosage was increased from 4cc to 6cc/day, and then to 7cc/day, but things still got worse, so the pediatrician ordered the upper GI so she could get him on some stronger medication and because it would take 2 months or more to get him into a pediatric gastroenterologist. Yesterday was his first day of Prevacid. The past several nights have just been miserable for him/us - he wakes up 4 or more times and has a really hard time settling back down to sleep (requiring to/insisting on being held) - he wakes up the instant we lay him down in his crib unless he is dead-weight asleep (which can take a long time of rocking). The doctor's office advised that it could take 7-10 days for us to notice any improvement. Has that been others' experience? What should I start to see? Will his sleeping ever get better? When can we start to sleep train again? I've seen some advice regarding Mylanta at night to help. How much should I be giving him? Should I be insisting that our pediatrician hand this over to a gastroenterologist? Any thoughts/advice I could get would be helpful - we're so sleep-deprived that we aren't thinking straight all of the time! Thank you in advance.
Jun 24, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Prevacid can take up to a full month to work. Usually you see good results with it by the 2 week mark. If you are breastfeeding you may want to consider removing milk from your diet as many who suffer from reflux also have milk/soy intolerance/allergy issues. You may notice that he responds well to the removal of dairy from your diet. I would not sleep train my child until I knew for absolute sure it wasn't the reflux causing him to wake or all your efforts will be wasted. I love my ped but my sons relfux issues are over his head so he defers all reflux issues to our ped GI. A good GI can be very helpful and so you may want to push further to see one if the Prevacid doesn't start working. Hang in there it will get better as he gets older. The sleep deprivation is horrible though so try to rest when you can.
Jun 24, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I just want to bring this up because no one warned me that it was possible, and I wish I had known long before we discovered it in my son, who was one of the worst sleepers ever....but reflux can cause sleep apnea, which can display as poor sleep and an inability to enter or stay asleep. I'm not suggesting that, based on the information you provided, I believe that it is true for your child, but my personal opinion is that any child who has reflux and responds well to medication but continues to have sleep issues, should have a sleep study done to confirm that sleep apnea is not the cause. I would be happy to provide you with more information if you're interested, but my sleepless wonder is waking up now :) ....
Jun 24, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I agree with everything said. The only other thing I can think to add is how to dose the prevacid. Most kids iin that age/weight are on at least a full 15 mg tab (I don't know how much that would relate to in a compound.) If you are using the compound, please make note that is is notoriously unstable - about 2 weeks is all it lasts, and it's a fight with the insurance to get it filled at often.

As for administering the prevacid, it must be given on EMPTY, or it won't work as effectively. At least one hour, preferably two after last feeding and at LEAST 15 min before next feed. No other meds (tylenol, Maalox/Mylanta, motrin....nothing) can be given within 2 hours on either side of the Prevacid.

We use Maalox as needed. I'd call the pharmacist for the dosing for this, but I believe that at 20 lbs, we used 4 mls up to 4 x's a day. When reflux was at it's worst for us, I used it during the night wakings, which at least calmed her down, though didn't guarantee any sleep.

Thought of something else - positioning. With a lot of these kids, upright is necessary. That may mean for sleeping too. We never could use a wedge, but she would sleep upright on our chests, and after a while we got permission from our ped to lay her propped on the left side. Since your guy is older, I don't know if this will be useful. The exersaucer was my lifesaver for during the daytime and the nights where I was too tired to hold her anymore but she was awake. I would nap on the floor next to it. HUGS mama - we hear ya!!!! Give it some time, but keep journals of EVERYTHING and take it to the docs. Anything you find is helpful - sleep patterns or lack thereof, eating habits and reactions to foods, aversions, delays, milestones, etc.

Jun 24, 2009
hawkeyelynn
HawkeyeLynn, mom to a baby boy with GERD
Thanks, everyone, for the help so far! Alex is on the Prevacid tablet (half of a 30 mg tablet), and he seems to take it very well (dissolves on his tongue). All I was told about when was 30 minutes before eating. Since he has lost interest in solids, he nurses more often than he used to, so the 2 hours might be tough, but I will keep that in mind if things don't seem to be getting better. I had given up dairy in general (not taking any obvious dairy) since it seemed to upset him from shortly after birth, but I tried totally going off dairy (like no milk as an ingredient) before he was diagnosed, and it didn't make a marked difference in his behavior and seemed to decrease my milk supply. I was keeping a very detailed log about everything, but stopped after he was diagnosed, but picking it up again is a good idea. Luckily, he is hitting all of his developmental milestones and otherwise is a happy baby. It is just killing us to know he's in pain and the medicine hasn't been working for him (and that he can't sleep!). I'm supposed to report back to the pediatrician next week with how he's doing, and if he's not noticeably improved, I'm going to push for the gastroenterologist consult...at least we can get an appointment that we can always cancel if he starts getting better! Thanks again!
Jun 25, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Agree that a ped GI is a good idea. This is what they do and they are the experts. Plus you are well informed and they can address your questions. Note of caution: GIs handle reflux treatments differently - some are more conservative or aggressive than others. Our GI is very 'slow and steady wins the race' and while he always keeps Charlie's pain and other concerns in mind, he takes baby steps in terms of implementing new ideas/treatments. But other posters have very aggressive GIs and parents have had to push back on what the docs have recommended. I still recommend seeing one, though. Just keep that in mind. Good luck.
Jun 25, 2009
mommato3
I agree with all of the above posts and susiegal is right about the GI. Sometimes finding a GI can be like finding a pediatrician. Some won't listen to your concerns and are too laid back while others can be too aggresive. Mine is too aggresive so we're going to another one that I hope will be just right. Feel free to ask any questions. Hang in there. Reflux is like a roller coaster ride and it can take quite a bit of trial and error.
Check with your
doctor first!