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Nov 18, 2009
buesco
could it be something other than reflux? what am i missing?
ok ~ i'm officially stumped, overwhelemed, overtired and heartbroken because i feel so lost. NOTHING seems to help my daughter and I can't figure out what exactly the problem is. She NEVER pukes, she's gaining weight but 90% of her bottles are a fight and she's going bananas. She 4 months, almost 12 pounds...been on 10 mg of Nexium for one week. She was on prevacid compounded for two months before (didn't help but maybe the compound wasn't made correctly) and on Zantac (didn't work either). Her formula is nutramgein. One day will be good but then the very next day will be hell. Or one feeding will be perfect and then the next one, she's going nutso. Why the fast change? Is that normal with reflux? Besides switching her to Elcare, I feel like i'm out of options and that just plain sucks. Last night was so bad feeding her that I had to call me husband in to the nursery to try to finish because i was getting angry and i know that's not a good situtation for anyone. Could she not have reflux? Could this be tummy issues? Nothing makes any sense to me...i try to look for a pattern but nothing sticks out. She started nutramgien and zantac at the same time when she was 1 month and the only thing that hasn't changed through all this is the nutramgien. We are thickening her bottle with simply thick nectar but i sometimes think that's making things worse. i feel like she's constipated all the time but she will usually poo once a day but i don't think she's getting any relief. and now i'm also afriad that i've created a food adversion but i think maybe the reflux is under control (she doesn't turn her head side to side anymore) just screams out and arches her back like crazy 2 to 3 ounces into the feeding. could be be a food allegry and not reflux? could it be that nothing will make this go away except time? sorry i know this is long, i'm just wondering if i'm missing something here that another mommy has had experience with.
Nov 18, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Have you done any motility testing??? It could be she is not hungry because he belly is not emptying fast enough. So, she will eat fine one feeding and then put up a fuss the next because she is still full from the last one.
Nov 18, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
I don't know that I can offer anything that you haven't concidered but I can remember being in the exact same place. Crying in the nursery at the end of my rope and just hoping for an answer. If she is constipated that can make everything else back up. Also if there is an emptying issue like Jeddsmommy mentioned it can cause a slowing of bowel movements also. Have you noticed how she dose when someone else feeds her. When we started feeding clinic my little on had a feeding aversion to me. She associated me with the pain because I was the one allways feeding her. Sounds terrible I know but maybe working with a feeding specialist could help if it is an aversion issue.
Nov 18, 2009
buesco
thanks for the input ~ i've thought about motility issues but didn't really think that was the main pain because she never vomits and she acts so hungry but you're right, that might be a factor. it just seems that lately she's seems very different, like the reflux might be better but there is something else bothering her ~ like her tummy. sometimes i think of just going back to square one and starting all over with her because maybe she just hates the nutramigen and needs something that actually tastes good. yes, i have noticed that she does better when my mom or dad feeds her, she does awesome with my dad. but here and there she will do well with me but i do feel like she hates me, my hubby and our nanny equally because we all rotate feeding her. but for a while (and maybe still) when i was home on maternity leave, i do think she associated me with pain. that's an interesting thought.
Nov 18, 2009
adelines mom
i tried to go back to four months in my head after reading your posts. colic! i still say our daughter had it along with her reflux. i can't remember what the time frame for colic, but i just remember the screaming and arching her back! we are still warming her bottle at 17 months. she will not take ANYTHING cold. it is always warmed and think that makes her feel better. we have had really good luck on compounded prilosec for what it is worth. know every child is different. adeline was on alimentum. it smelled so bad! we also used the simply thick. i do think it can cause gas. we used mylicon drops too with success for this. miralax has been a wonder drug for us! adeline was pooping once a day, but uncomfortable and straining and the reflux would come up through her mouth and nose. that stopped the day we put her on it. we had great luck with dr. brown's colic bottles and nipples. we tried a lot of different bottles and different nipples too. just trying to throw a few things out.
Nov 18, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
have you checked if the nipple size is compatible with the simply thick? you may need a faster flow nipple. babies get fussy when they are hungry and have to work to hard for it. she also could not be tolerating the nutramigen, it happens. you could talk to your dr and see if switching to elecare or neocate would work better for her.

on the other hand, has she ever had an upper GI or small bowel follow through? or even a gastric emptying test? is she bloating? a lot of babies have trouble around this age with having a bowel movement b/c they are learning how it feels to make the muscles move to have a bowel movement. either way, this is definitely worth talking to your dr. about.
Nov 18, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Ditto to all the great advice by the moms who posted to you already. Your daughter and my son could be the same baby. Seach my screen name and you will find posts by me that are so similar to your story. We are finally on the other side of it.....

Couple more thoughts... Try to give the Nexium a full 2 weeks. Typically the first thing that stops once the meds start working is the head thrashing. It takes a little longer for the back arching. What I believe is happening is that she is getting 2 to 3 oz in her and her stomach starts kicking it back up on her ie refluxing, even though it is not coming out of her mouth/nose. She is reswallowing it. I say this because that is exactly what Ryan would do. He would be so hungry but once he hit the 3 oz mark his stomache would kick it up and so he had to fight to get it down. When the meds werent right it burned and he screamed and ached his back... When the meds were right it stopped burning thus the arching stopped but he would still cough and choke and would have to work hard to keep it down. It took time for his stomache to stretch out and be able to handle more oz. I can count on one had the number of times Ryan has ever spit up. He is a silent refluxer just like your daughter. Soo.. unfortunately it burns going up and burns going down. The right meds will stop that.

OK, last thing........ Think of this an endurance marathon... not a sprint race. You have several months to go on this journey if your daughter is like the rest of our kiddos. Figure out what YOU need to be healthy. Only if you are doing well, will you be able to help your daughter. All moms are built to put themselves last... that just doesnt work when you have a high needs refluxer. The screaming, not sleeping and stressful feeds will put you over the edge. You will get her meds figured out... BUT you will have good weeks and bad weeks. Colds, flu, teething.. all those things will give you set backs. Expect it. I kept telling myself.. I dont need anyones help, surely next week it will be better... ok maybe next week, well maybe the next week, ok, definately this week. That "next week" turned into 14 months.... Great days, good days, challanging days, really hard days, all mixed in together. I dont tell you this to scare you or put you over the edge more.. I just want you to think about the long haul of this disease that your daughter is fighting. Surround yourself with good people and push your doctors hard. Listen to your gutt and dont stop fighting for her. We are all here for you!!!- Karen

Nov 18, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Well, IMHO I would pursue the constipation issue. She CAN be constipated even if she is still pooping. If she has to strain or has pebble like bowel movements I would discuss it with the pedi. Constipation can cause huge pain problems for these kids and can cause reflux to flare up too!!

My daughter's doctor also mentioned that children can have IBS and that can cause a lot of stomach pain. Also might be worth looking into. I agree with the pp's about giving the Nexium the full two weeks to see if it will work for her as well.

She doesn't happen to be teething does she? That can also cause reflux to flare at seemingly odd times. It also makes for a very unhappy baby. You may ask about what meds you can give to make her more comfy if she is teething. We usually used tylenol. The ibuprofen can be hard on sensitive tummies sometimes. When I do have to use ibuprofen I always make sure mine have some food in them to buffer it. kwim?

I hope she is feeling better tonight and that you will all get some rest!!! Try to give yourself a break if you have someone who can help. Reflux kids are rough and you HAVE TO take some time to yourself to regroup!
Nov 18, 2009
mommamia
Daughter, Mia, born IUGR weighing 4 lbs. 10 oz, diagnosed with reflux at 2 months, open heart surgery to repair VSD at 7 months. Currently on Prevacid & Erythromycin. One happy little girl despite her many struggles!
Lots of great advice above from the other moms. I just wanted to send you ((hugs)). I've been there too, like so many others here, and definitely feel your pain. I want to reassure you that it WILL get better. My best advice is this...You are your daughter's best advocate. If something is not right, keep fighting for her. Keep trying new things, but only change one thing at a time and give each thing a chance to work. I agree about giving the Nexium some more time...PPI's need to build up in the bloodstream. Stay strong and keep fighting. I know it's hard to see right now, but there IS light at the end of the tunnel!
Nov 19, 2009
buesco
thank you thank you thank you ladies! i can't tell you how much i appreciate your insight. when i picked lucy up from the nanny yesterday, she had only taken 1 oz all afternoon, nothing would calm her when she ate. i told the G.I. doc over the phone that they HAD to see her today because things are getting worse and i feel like it's insane to continue doing these things if they aren't helping. i have noticed the lack of head thrashing so i think you are onto something VigilantMom! this morning, she was starving but two ounces in she was arching and screaming so much, i honestly thought she could touch the back of her head to her feet. it's very sad to see so i just stopped feeding her and let her suck on her paci and then she's fine and will smile and nap for about 20 minutes. i'll let you all know how things go and progress but your support has helped so much. my husband and i are young and don't have many friends who have kids and those that do, all have babies who are "perfect" (don't ya just love that!). but i do have a wonderful, supportive family and friends and now, thanks to PAGER, other moms who can help!
Nov 19, 2009
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
The moms on this site are wonderful! The only thing I must add is that your daughter is sooooo cute! I love the leggings :)
Nov 19, 2009
nanners21
I read your post and feel very much the same with my almost 5 mo old. Just when I feel like we are making progress I feel like we take huge steps backwards. I am a stay at home mom and feel super frustrated. Overall she is gaining weight and healthy so we are blessed but I just don't feel like she is 100%. We have talked with doctors from Ped to different GI doctors. We wondered if it was food intolerance too. We just switched to neocate this week and had added Zantac to the Prevacid solutabs she is already taking. I wish I could give suggestions but wanted to write to say I know how you feel.
Nov 21, 2009
sadie'smom
Whoops, I just posted this on someone elses' post, but meant to put it here---Just wanted to say that I'm going through the same thing and literally feel sick to my stomach getting up in the morning. Sadie cries or needs consoling almost all of her waking hours. My heart is broken from seeing her in so much pain. Our GI specialist says that the relux will get worse from 5 to 7 months and last about year. I can't imagine seeing my little girl in pain for that long. She's almost three months now. Is there a section of this site where people can post information about when their child's reflux got better?
Nov 23, 2009
buesco
i wanted to give you all a quick update on how lucy's doing and let you know that we've had FOUR AMAZING days. having said that, i'm fully prepared for it all to come crashing down but even if it does, i'll always remember that that "one time in november, she did great for four day" :) lucy went back to the GI on thursday after i pretty much told them i would camp out in their lobby if she couldn't be seen! the GI thinks three things are going on. #1) reflux, #2) milk protein allegry and #3) behavioral. the more and more i think about it and reflect over the past four months, the more i think behavioral might be a real issue now. like her reflux may be better with meds but she doesn't know any different but to freak out when she eats. i can honestly say that i'm way too tense when i feed her because i know what's coming and it's way stressful. for her, eating has become very associated with crying, anixety, pain and being forced to eat. so, our new game was is stay on the Nexium (10 mg in the morning), switch with Nutramigen AA formula (same thing as Elecare and Neocate) for allegries and associate feeding with happy times and let lucy take the lead. When we left that appointment, i was determined that no matter happened when i fed her, i was going to stay calm and in control and if she got upset, no problem and we would try again later. we are giving her 24 calorie per ounce bottles now so we don't have to try to get so much formula in her per sitting, which is a relief for me. maybe i've dreamt the past four days because it doesn't seem like it could be possible or that a new formula could work that fast. she has taken about 24 four ounces bottles like a champ now ~ no screaming and very little fussing. i wonder if this is what its like when you baby doesn't have an allegry or reflux? just normal, happy eating time?! by no means so i think this is even close to the end of our journey but like i said, we had several good days and i'll take it and always remember it. she is still waking up several times during the night, not sure if that's going to change any time soon but maybe...one can hope right. one of the mommies mentioned earlier in this thread about this being a marathon not a sprint. that's really changed my thinking and approach, i'm thinking long term and baby steps instead of "make all this go away this very instant!". slow and steady, right!
Nov 24, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Whoo Hoo!!! Isnt it amazing what the right meds can do for your baby? They want to eat but they are not stupid. They figure out pretty quick that if it hurts, then stop. Wishing you many more happy peaceful gobble up the bottle days ahead. Stay in touch!!
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