Posted By Posting
Dec 22, 2008
jenb130
Jennifer
I'm new here, frustrated with reflux!
Hi everyone, I've been browsing the posts here and have found a lot of good info. My story, in a nutshell... My daughter Savannah (9.5 months) diagnosed with reflux at about 6 weeks I think? Started prevacid 7.5 mgs a day and cut out all dairy (I'm still breastfeeding) she eventually seemed to get almost completely better by about 6 months. Now we are back to where we started, she is on 15mgs of prevacid a day and I just got some maalox, which doesn't seem to do much. She refuses to sleep unless we are holding her. She cries/screams for probably 6-8 hours out of the day, but has moments in there that she seems totally fine. She is teething has 4 teeth already. I'm just so frustrated and resentful. My husband and I take turns at night rocking her. I actually said last night "why did we decide to have kids?" I need sleep. I think we are canceling our holiday travel plans because I just can't stay at someone else's home with a child who screams that much of the day. And I don't even know what we would do at night... Anyway, any tips are welcome, I'm pretty much open to anything at this point. I think my next step is to do allergy tests. I've cut dairy out of my diet and hers as well. She was eating solids very well and now is refusing pretty much anything besides oatmeal. She is in the 90th percentile for weight so thats not an issue right now...but I know she isn't eating like she was. Thanks for listening! I'm happy to find this place, so many people dismiss my concerns/frustrations with GERD that its nice to read that I'm not alone.
Dec 22, 2008
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.
Welcome -- I'm so sorry you're on the sleepless train. You will find lots of here on the same unfortunate sleep plan as you -- it often goes hand in hand with reflux. You can find some good tips for environmental changes you can make to help your little one in the Basic Info and Reading Room sections of this site. That said, sometimes nothing seems to help. My first thought about your situation is that perhaps the medication is no longer working for her. Sometimes even meds that seemed to work in the past stop working, or need to have an increase in dosage, or be coupled with something else to continue to be effective. If you haven't already, I would be sure to let your pedi know how bad the situation is, and also, if you haven't already, ask for a referral to a GI specialist.

One of the toughest things about having a baby with GERD is how isolated you can end up feeling, as so few people really understand what it is like. You will find many people here who truly understand what you are going through, as well as loads of helpful information.

I'm glad to hear that you have been able to continue breastfeeding! I have been similarly fortunate, and have been breastfeeding for almost 20 months now. I honestly believe that, in our case, it is the only thing that kept my son from having serious weight gain issues. For some it is the opposite, so I'm glad for you that you have had success with it. There are quite a few of us here who both breastfeed and get precious little sleep, so whenever you need a bit of advice, a place to vent, or a shoulder to cry on -- we're here for you!

Dec 22, 2008
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!
Welcome to the house of insomnia - most of us have been there and offer full empathy!

I agree with lorenzomama about the meds - sometimes they stop working. Or, they still work but it's not enough. Have you asked to your MD about adding an H2 blocker to get her through the worst? We used both Axid (did okay) and Pepcid (worked very well.) We used the Pepcid in the mornings since it's not so sensitive to food in stomach and timing, and we do the Prevacid in the evenings when it's easier to time the meals so she's got the empty stomach needed for it to work.

Has she been scoped or gotten any biopsies done? Many times GERD is dx'ed symptomatically and not diagonstically. If not, I'd ask about one - heck, even if she has, I'd ask about a second one to check for damage.

Teething is a known monster and sidekick to reflux pain. The excess drool, combined with pain in the jaw and sometimes the ears, just all kick up symptoms. Motrin has been a good friend to us.

Solids can make reflux worse, or make it better. These kids never seem to just glide through anything. For us, solids made things much better, but there are many moms on here that it started a downward spiral. Have you tried mixing some solids with the oatmeal?

I've had the times where calling the adoption agency sounded like the best option - I still have very little patience with the bad times. I've beat my head against a wall (kept finding a stud, so I stopped), I've thrust my daughter at my dh and run upstsirs screaming, and many other episodes like it. This journey is fustrating, confusing, and a test to all limits. But feel free to vent, cry, celebrate, and question to your hearts content here. I thought I was insane until I got here - then I just confirmed it ;-)

Dec 22, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hi! Welcome! Just know that we've all been there and we know what you're going through. We've all had thoughts that later we think we shouldn't have, but remember we're humans not saints :)

About the meds...is the 15mg split into two daily doses? That helps most babies. Also did they tell you to make sure you give it on an empty stomach? That also makes a huge difference.

Have you cut out all dairy down to looking at the labels on everything? Some kiddos that have dairy issues, also have soy issues. And I've found out through here that they sneak soy into EVERYTHING. I remember someone said soy is in lunchmeat. Did you look in the reading room on this site? There's some great info on elimination diets.

That's all I can think of right now. I hope maybe I hit on something that will help. Hugs!

Dec 22, 2008
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
Hi Jennifer and welcome. There are many lovely mamas here to keep you company during this difficult time. I get quite angry and upset when my little guy has flare ups. Then I feel horrible. ): Colds are a nightmare too. I've learned that timing the prevacid is really, really important. 2hrs after a meal or 30 minutes before. And I try to give his pm dose early- like 5pm. That seems to help his sleep. Your concerns will not be dismissed here!
Dec 23, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
The best part about this sight is that soon you won't feel like a complete crazy person. I never knew there could be so many others going through the same thing.

my advice would be to find a good pediatric GI. They really are the experts and our pediatricians can only take us so far.

I learned that GERD is really not something to be taken lightly. I wish I would have found a good GI right away. Do you have a children's hospital near you?

Dec 23, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I would definately keep the allergy testing in mind, especially if there is ANY history of seasonal allergies, food allergies, asthma, or eczema in the families. It can happen anyway, but less likely. Some allergies will show right away with scratch testing, but others can be hidden (delayed-onset). These are only found with patch testing (not all allergists do patch testing). The screaming/crying for that many hours is definately a red flag. Hope you can get to the bottom of it all soon. Trust me, I know how horrible that is. Ellen
Dec 23, 2008
jenb130
Jennifer
Thank you so much ladies for the kind words and advice. I did take some advice and made sure she was getting her prevacid on an empty stomach, and that has really seemed to help. Also her cold is lessening up some so perhaps the combo is what is giving us relief. We don't have a children's hospital near, the closest is Denver which is about 6 hours through some treacherous roads, but I haven't checked to see if there is a Ped GI in town... I am going to get her in for allergy tests right after Xmas and then get a referral to a GI just in case. She has eczema going on pretty badly right now, I had a ton of food allergies as a baby, her dad has asthma and we both have seasonal allergies!!! So I'm guessint the allergy tests might shed some light on the subject. On a good note, my husband took her last night and I slept down stairs and got good sleep, and she only got up once!!! And slept in her crib, so we've definitely made some progress, on a lesser note, I just watched her puke on the floor right now...but she did it happily, a few days ago that would have set off a few hour long crying spell. Thank you so much for everything... and no dismissing my concerns. Have a Merry Xmas. I will update when I have some news.
Check with your
doctor first!