Posted By Posting
Oct 24, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
New Member with questions
Hi Everyone. I have 2 children, Alexandria 3 1/2, and Aaron 9 mos. My daughter had "silent" reflux, poor weight gain, puked a lot, but got over it by 5 months (then had a bout of gastroenteritis, ugh). My son has GERD. He pukes several times per day, is on both Prevacid and Axid (he was on Zantac but it didn't seem to help much). He sleeps terribly--screams all night and only wants to nurse throughout the night. His weight gain has been good, but in the last 3 months, he only gained 2 pounds. He's had an upper GI series with a small bowel scan and it showed "moderate" reflux. I just took him to see a Gastroenterologist who seemed unimpressed with his symptoms and thought he had a sleep disorder. After a bit of conversation with this doctor, she finally suggested that perhaps my son should have either a ph Probe or an endoscopy. I've asked for the Ph Probe. I'm not impressed with this doctor as she pretty much made it seem as if whatever is happening with my son is a non-issue, but I beg to differ. Does anyone have any suggestions? By the way, I don't bottle/formula feed at all. He is eating some solids (stage 2) and breastmilk/water. Thanks!
Oct 24, 2008
stickybean
i would go with your gut! Do the test you want and maybe find another GI Doc. I am sooo sorry you are having issues. Joslyn is a Silent Refluxer........

I am sending hugs and well wishes!

Oct 24, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I would ask for the test that measures more than just acids. I am not sure but I think it is called a impedance probe. If a tube has to go down, u may as well get as much info as possible.

Your GI does not seem to take u seriously. I would address it directly or find a new GI. A lot of people don't like my way of doing things, but at some point I asked a pediatrician why he was determined to torture my daughter. I asked him if he understood that she was a whole person with feelings and mental health as well. I asked did he know that everything we do to her affects her in more than one way.

His response was forget her mental health, forget her feelings, forget her pain, maybe she will outgrow it all before she remembers.

I hit the door and never looked back.

Oct 24, 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!
http://www.cincinnatichildrens.org/health/info/abdomen/procedure/gastric-reflux-test.htm

That site explains the impedance probe that engin mentioned. My dd had the pH probe. From the site, it's very similar. The imp. probe measures the amount of liquid and the acid level coming up and from what I was told, the pH probe only measures the acid level. They both work the same way. A tiny cord inserted through the nose down. It sounds much worse than it is (in my opinion-Mags did fine with it). I actually saw a little girl that was about 3 in toys-r-us with one the other day. She was just being a little girl, she had a backpack on to carry the monitor.

Have you done any elimination diets? Did the GI doc not even talk to you about that? You can find some "trigger foods" in the reading room on this site.

I agree if this doc isn't meeting your needs, by all means, find another one.

Hope I helped!

Oct 25, 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.
We dealt with physicians who were similarly unimpressed with my sons condition (he is a silent refluxer, who comfort feeds and gains well, but sleeps horribly). In fact, I was told point blank on several occasions that I was causing his troubles by breasfeeding him on demand. He eventually started aspirating, and we were sent to a pulmonologist who took his situation very seriously and ordered a pH probe and a sleep study. The probe, unfortunately, was done incorrectly, so it offered no information, but the sleep study revealed that he has obstructive sleep apnea, possibly from the reflux (which is what the probe was supposed to help prove...). The whole situation really taught me to listen to my instincts, and to push for answers even when physicians minimize my observations. Hang in there, and remember, doctors are supposed to be there in service of their patients. It is easy to forget that we are the customers in health care, and we have a right to have our concerns and questions responded to and answered to our satisfaction.
Oct 25, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
Thank you!
Thank you for responding so quickly! The doctor never mentioned anything about an elimination diet, although I have been doing that for a while anyway. I have a serious peanut allergy as it is, so I stay away from nuts. I have been lactose intolerant most of my life, so the amount of dairy in my diet is limited. I don't have an orange or grapefruit juice, seldom have apple juice. I have 1 cup of coffee/tea per day in the morning. He is so active all day that I don't think it bothers him. But I've been trying to get away from that now too. I don't eat spicy foods, anything cruciferous (broccoli, cabbages, beans) because I know he already has gassy issues. I eat very little garlic and never raw onions. If I eliminate much more, I won't have much to go by as it is! I am going to look into this impedence probe. It makes sense. I have also been told that I am spoiling my children by nursing on demand. In fact, when I took him for the upper GI series and they had to give him the barium, they gave me quite the look because he doesn't drink out of a bottle (he takes a cup but they didn't ask me that). I've been questioned in the last couple of days by other people about my breastmilk--could he be allergic to it? The thought has crossed my mind but wouldn't there be other problems? He has been gaining very well up until more recently. He is very active--cruising and starting to take independent steps. Has anyone heard of a "developmental pediatrician"? My husband's niece mentioned to me yesterday that I should consider taking Aaron to see this kind of doctor. My step-daughter is a speech pathologist who deals with these issues regularly and sees Aaron as thriving, unlike most of her patients. He's in the 60th percentile for his weight now (21.1lbs and 29" tall at 9months), dropping from 75th at 6 months. Our pediatrician isn't concerned about this as much as she is his obvious discomfort. He's very happy all day and gives me the biggest smiles, but when he's in pain, the sound he gives off is terrible. Clearly there is something going on that has nothing to do with my "spoiling him".
Oct 25, 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.
You are not spoiling him! Giving a child attention and meeting his needs is called mothering, not spoiling. It sounds like you have a great connection with him, and sometimes people in our culture are uncomfortable with that (who knows why...), but that is exactly what allows you to know when something just isn't right. It would be EXTREMELY unlikely that your son is allergic to your milk, although he could certainly be sensitive to something in it. I sometimes used to feel like I was poisoning my son, nursing sessions were so hard, but once we had his reflux pain more under control, things got much easier.

I did an elimination diet when my son was a few months old, and while it was really hard at first, I found that I was able to slowly add back things that had previously bothered him as his systems matured. Everyone matures on their own time frame, so don't assume that something he is sensitive to or intolerant of now will be problematic forever. As for weight gain, it is totally normal for a toddler to slow down in the rate of weight gain. They are so much more active, and your breastmilk does change over time, offering less fat than it did when he was very young. If you haven't already been there, the La Leche League website is a great resource for breastfeeding moms, and there is also a mother to mother forum which includes one on breastfeeding toddlers, which you might find interesting. They are at www.llli.org. Hang in there, you are doing great!

Oct 25, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I was never advised by a dr to do the elimination diet, but I did it on my own and it changed our lives. I am really tired right now, but I will explain it in detail later and what it has done for us. If you want to read some of our story, you can check out our blog schiwartfamily.blogspot.com Btw, he can not be allergic to your milk, but to something you are eating. If he were truly "allergic" to your milk you could not have carried him, your body would have rejected him so to speak. Try to ignore people's inconsiderate comments. BFing is your right! We got a lot of, "you must not produce enough, so your baby's starving and that is why he's not gaining weight" from people on the outside. It can really hurt and wear on you. I am glad you are here and can get some support.
Oct 26, 2008
momtomaia2005
He sounds a lot like my older DD at that age. Her reflux was unmedicated at that point, though, and she ended up with obstructive sleep apnea due to enlarged adenoids caused by the reflux. She had surgery at 16 months to remove her adenoids, but it still didn't solve her sleep issues. She would nurse allll night long, comfort feeding to relieve the reflux pain. We were able to sleep-train her at around age 2, once we had her on the correct dose of Prevacid. It's impossible to sleep train a baby who has reflux pain IMHO. Also, I found that teething multiplied the reflux pain for my DD :( In your case, I wouldn't try sleep training or nightweaning since your son is gaining well but isn't huge. The night feedings are definitely contributing to his good weight gain. If you can stand it for a while longer, try cosleeping night nursing. Also, feeding on demand isn't "spoiling" your child. That's ridiculous. This is what mother nature intended for us to do! I nursed Maia to 26 months, when I was so sick from my pregnancy that I had to wean her. I'm going to let #2 (also a refluxer) self-wean anytime after age 2. I firmly believe in nursing to a minimum of age 2, especially for kids with gastro issues. I so wish that you were in Central FL, because my kids see the most amazing pediatric gastro here. He is from Latin America, where it is expected that you will nurse to a minimum of 2 years. He gives me high 5's for nursing my kids for so long and tells me that it's the best thing for them :) He is so kind and caring! I swear, he's worth a plane trip, LOL!
Oct 26, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
Thank you so much
Let me first say that I am so thankful to all of you who have taken the time to post to my questions. It has been a very frustrating few months, to say the least, and with the input you have provided, I'm already feeling much better. It's almost funny because usually I'm the one everyone comes to for advice but because of all the recent events, I've been feeling as though perhaps I'm really an idiot. Nope. I nursed my daughter until she was 15 months. I really enjoyed that time with her and had absolutely no troubles nursing. I think I would have continued but she was really using me as a pacifier at that point. Today she is about 27-28lbs at age 3 1/2 and eats pretty much anything I give her. She loves fish which amazes everyone and green vegetables! Thankfully, aside from the first 6 months of her life, she has seldom ever been sick. She's had 4 colds (in total) and 1 bout of strep throat--this year. My son, at 10 days old, came down with a cold. Shocked me. But as I told everyone at the time, I think it started because of his reflux. When he vomited, it would go straight up his nose. Poor thing. So that landed us in the hospital early on because he had a terrible cough and fluid behind his ears. Thankfully, it was just a cold. No ear infection, no fever. When my daughter got strep, so did he and he was 4 months old. We couldn't believe it as that's pretty unusual from what our Ped. told us. Anyway, this reflux business hasn't improved and I'm thinking that I should keep a journal of his activity. I try to let him sleep in his bed to start at night, but once he wakes up, he "sleeps" with us. Last night, he puked 4 times before he fell asleep so I just kept him beside me all night because I was afraid of him choking during the night and not hearing it. As for the GI, apparently there is only this husband and wife team in the area. I'm told there is another doctor who is more of an allergist and that she's better. Someone else mentioned that there is a good ped. GI about an hour from here in Rochester (NY) so if this one doesn't pan out, I may go to the one further away. By the way, he cut 2 teeth in the last week or so but doesn't seem to be really bothered by them. He's more upset by his discomfort. I felt like telling the doctor to come and stay at my place so she could see what's going on. Of course he has sleep issues--wouldn't you? Ironically, he's actually starting to nap more now. If only I could get him to do this at night! Let me ask another question, do you have your children vaccinated according to the guidelines?
Oct 26, 2008
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!
Welcome to PAGER! Glad that you got a lot of your questions answered. I was also concerned about the vaccination schedule with my GERDlings. Mainly because they were Failure To Thrive and I felt like they were too "frail" for that many shots. My DR said that it was even more important for them because they were FTT. He said that if they were to get sick with one of the illnesses the vaccines prevent that it would be much harder on them. So he convinced me to go ahead on schedule with their immunizations.

I would talk with your DR if you are concerned. I think they can stagger them so that you don't have to do them all at once. That might be an option if you are worried about having that many at one time.

Again, WELCOME to PAGER!! Let me know if we can help you in any way!! ((HUGS))
Oct 27, 2008
momtomaia2005
Yes, we vaccinate on schedule 100% of the time. I even tried to move DD2's rotavirus vaccine schedule up until my ped. bascally told me that that was unnecessary.
Oct 29, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
update
Thanks for the info re: the vaccines. My sister-in-law and her daughter or so overly concerned about the correlation between vaccinations, autism, and boys that they keep telling me not to get him vaccinated. I have asked my doctors about it, read a lot of research, and haven't found anything that proves this to be an actual fact. What's more important to me is to keep them healthy so I have had them vaccinated on schedule. Aaron is also having the PhProbe on Monday. I have to take him off his meds entirely for 72 hours in advance and be at the hospital for 7am. This should be interesting as he is generally up most of the night and finally falls asleep around 7am! He's still puking--yesterday at least 6 times. I can only hope my pediatrician will have some better information for me than the GI did.
Check with your
doctor first!