Posted By Posting
Mar 27, 2009
jonah's mom
new mommy to 7 week old Jonah James born 2/4/09. 7lbs 12oz. pic is 6 days old.
I am convinced its silent reflux and extremely worn out :(
Hello everyone, I just found this site. My little man is 7 weeks old and i have been trying to figure out some "miracle cure" since he was 2 weeks old. Jonah is fussy or crying ALL THE TIME. First we just thought it was extremely bad gas (it would wake him in the middle of the night and it sounded like he was in exscrutiating pain!), We started formula at 2 weeks old. We have tried soy, lactose free, gentlease and nutramigen. We tried each one for 1 week. soy made him throw up everytime. so we tried lactose free, he did not spit up but the fussiness/crying did not change so we tried gentlease because of the horrible gas. Still fussiness/crying so someone mentioned nutramigen. It gave him diarrea for 4 days straight so i was scared (new parent!) and went back to gentlease which he is on now. The doctor said that if there was no change then it just must be him and that he is colic and to try and burp him better. I tried gas drops. Nothing. I tried gripe waters. Nothing. I tried Colic Calm which i don't really see a difference but i still use because i think it has to be doing something for him. Then last night my mother-in-law said she thought he might have reflux. so i started researching this morning. (Being a new mom, i have no idea about any of this stuff and am always on the internet learing) and I realized that i am totally convinced he has silent reflux. These are his symtoms: I always see him make a noise like something came up, make a yucky face, swallow, and then he fusses and cries. (this is what my mother-in-law saw, and now that i know what i am looking for i see it all the time) He eats all the time. It always seems like he is hungry. He will eat 4-6oz every 3 hours, sometimes 2 & 1/2. He burps and seems content and happy for about 10 minutes then all of a sudden he starts crying like he is in pain, and fussing for what seems to be for no reason. This goes on ALL DAY. I have to carry him around in the front carrier if i want to get anything done, and still i have to be up moving around. He hates his car seat, he hates his swing, he hates everything. It gets worse in the evening where he litterally cries for hours like he is dying!! And you can tell he is in so much pain! He has wet burps and hiccups all the time. He does not spit up everytime on the gentlease but when he does it smells sour. I think he eats so much to try and soothe the pain. He maybe sleeps a total of a hour and a half during the day, and this is usually broken, and him always waking up crying. I can tell he is exsausted but it's like he fights going to sleep. At night we figured that if we wanted him to sleep more than an hour we had to put him on his tummy. and then he still only sleeps 3 hours. sometimes 4 hours but that is with whining in his sleep in and out the last hour. ( we have been trying rice in the bottle and that does not seem to help) There seemed to be a couple days at about 5 weeks when he first started with the cereal where he slept 6 hours at night but then that ended and everything seemed to get so much worse. He makes gurgling sounds, he wheezes, and also sounds nasaly like he has a cold. He squeaks a lot, which i used to think was cute but then realized it seems to be him sucking in gulps of air over and over again and he does this all the time, and that can't be good. When i hold him to my chest when i sit he is always pushing off his feet and arching. I called the doctor after reading all this and she said that lots of babies get reflux, to just make sure i am burping him well. I said someone suggested peppermint water and she said i could try that but i did tonight and that did nothing, he actually seemed to cry harder after. I asked about prilosec since i was reading about that and know someone who's baby is 2 months older than mine and has reflux and it worked wonders for him. She said they only do that for babies that seem to be loosing weight or not gaining. He is gaining fine but he eats so much i think to soothe his pain! So here i am. After I had another breakdown of crying tonight, my husband and I are ready to go to the doctors tomorrow with my list and really push it. But am i right or am i just looking for an answer?? I just know somthing is wrong with my son. He is in PAIN! and the "wait it out" until 12 weeks seems horrifying, i am not sure how much more i can take! Sorry to write a book, i just wanted to get all the facts down. hopefully someone can help me????
Mar 27, 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.
Follow your instincts, mama. Just because you are a first time mother doesn't mean you don't know your own baby. What you describe certainly could be silent reflux. If your child's doctor is concerned about medicating based solely on symptoms, you might want to press for testing (ideally a pH probe) in order to confirm or deny the presence of reflux. The notion that failure to thrive is the only reason to treat reflux is outdated and fails to respect the amount of pain caused by reflux episodes. If you feel strongly about it, and your doctor refuses to do any testing, I would personally consider finding a new doctor. There really isn't a good reason that I know of NOT to test if your little one is suffering so much.

((HUGS)) I know how hard it is to watch your little one suffering and feel helpless. You are doing a great job. Hang in there, you found a great resource here in this forum, and you are never alone!

Mar 27, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Seconded. Only I would head straight to a new doc. If yours doesn't seem to want to help your babe when he's in pain, do you still trust him to do what's best in other situations? Trust your gut.
Mar 27, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
I knew my first son was in pain at about 5 weeks old. It took until he was almost a year old, and three Pediatricians later to diagnose reflux, then Milk/Soy Protein intolerance. I would "push it", and if don't get any help go to another doctor. Good luck, you know your child best!
Mar 27, 2009
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.
You are absolutely correct in everything you are feeling about your son. My personal opinion is that you REALLY need to find a new doctor. It seems that while this one may be really great at treating certain things, reflux is not her specialty.

Many, many, many reflux babies gain weight and grow perfectly fine but still have the horrible pain of reflux. My daughter never had issues of weight but has GERD big time.

We are so lucky that we have medicines that can control and treat reflux. THis can be a horrible disease and if left untreated could cause damage in babies esophpgus and stomach

Your little one is in pain and if you can get him started on some medicine you can help him. I would push for zantac at a minimum today and if you can a PPI like prevacid solutabs. In the mean time I would search for someone who specializes in treating babies with reflux. Perhaps a ped. GI

I feel your pain - it can get better.

Mar 27, 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!
Okay, not all reflux babies are FTT - mine was a fabulous gainer, ate all the time, and yes, SHE HAD REFLUX! What he's doing is "comfort feeding." So I'd get a new ped, pronto. And get a referral to a pediatric GE.

We were right where you are now a little over a year ago - nothing made my dd happy. She did NOT sleep more than 5 minutes at a crack.

Small, frequent feedings help - at his age, I think we did 2-3 oz every 2 hours (at least close to that with all the meds she was on). We had a heck of a time burping, and every time we did, we got drenched, so I gave up. I just made sure she got simethicone instead.

Can you try oatmeal cereal instead? If no family history of allergies, it may be another way to thicken and weigh the food down so it's not coming back up. Rice is actually pretty tough on the tummies of reflux kids.

You're doing everything right, but until the pain is under control, there's not much else you can do. Heck, cry and rant in front of the doc to show that you're not just paranoid. And make a rukus - no one will fight for your kid like you and your hubby will. Most of us have fired docs and moved on. They don't really care much if they refuse to listen to you. HUGS!!!!

Mar 27, 2009
evan's mommy
Hey there mommy...I just got on this sight yesterday and have found the women to be SO helpful. Okay, your story sounds so much like mine. I am positive that he does have silent reflux. It is so hard to get the drs to take you seriously...they will say he is colic, or all babies have reflux. PUSH, PERSEVERE...in fact my son is now 5 months old and we are still not doing well. I would recommend zantac ( acid blocker), or prevacid (acid supressor). Don't give up. The drs finally took me serious when I was calling every day for about 2 weeks straight. I would ask for a ped GI referral too, as the other women have said. Silent reflux is so much worse I think than normal reflux, because the acid burns up and down. Our poor little guys are so uncomfortable and it is so hard as a mom to deal with that. I am with you there...hang in there...you have a host of friends here that will TRULY understand what you are going through!
Mar 27, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
You are on the right track, I think. It certainly sounds like reflux symptoms to me...very similar to what we dealt with with my daughter. I agree with the others - get a new doctor...TODAY. Hang in there - we've all been in your shoes and this first part until you can get on the right meds/formula is hell.
Mar 27, 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
Don't settle for the line that if the baby is growing it will be find and meds aren't needed. There is NO reason WHY your baby should have to suffer just because he has silent reflux and is not a vomiter.

I'd push more and if the Ped doesn't want to deal with it ask for a referral. If they won't give a referral make an appt with a different peds office ASAP. GERD is NO joke and too many DRs think it is.

Try to prop up the bassinet or crib. You can use books or bricks under one end of the feet. If it's a crib you can put pillows UNDER the mattress. NOT under the fitted sheet but completely under the mattress itself.

Also you can make a U out of an adult towel by folding it LONG ways. Then use that U around the baby while they sleep. The sides of the U go on the sides of the baby and the legs go over the end of the U with the bum resting on the bottom of the U. Let me know if you need a picture. The only one I have that shows it really well is of Jedd in the PICU with all his tubes and lines in.

This worked really well for Jedd when he was in the bassinet and the crib. Until he was able to roll over then we had to ditch it because he'd roll face first INTO the towel.

Mar 27, 2009
sickofspitup
Jonah
Hello Jonah's mommy.. well girl take a deep breath and know that this to will pass although you must feel like nothing is making sense these days. I have a 12 week old boy (lucas) and he has and had all the same problems. This is where we are now and maybe this might help. okay swaddle swaddle swaddle I cant stress that enough, he also gets put in a swing (swaddled) with a white noise machine going in his ear. The formula we are finally on is Alementium (no more than 4 oz at a time) less volume more feedings. He takes prilosec and I just ordered a Nap Nanny (google it, I cant wait to get it) My son is also gaining weight and is thriving, but at my cost. I have to feed him often, hes fussy and throws up alot. Keep in touch gotta run and good luck!
Mar 27, 2009
nikkid
All the advice you will get on these forums is invaluable. If it wasn't for the advice and experience of the members on here, my son would still be suffering a great deal now due to the inexperience of the doctors I have come up against. The symptoms you are describing are identical to the symptoms my son, Billy was having. I knew when Billy was just a week old that he was in an awful amount of pain. Having read up on reflux, Billy checked all the boxes. However, trying to convince the doctors was the real battle, we came up against the usual, "it's colic", or "he'll grow out of it when he's 3 months" or "well, he's putting on lots of weight". Billy never brought up his feeds until he reached 8 weeks. You need to find yourself a specialist, but until then, you need to shout until your doctor listens. As the others have said, raising the cot helps, swaddling, carrying in the sling, small frequent feedings all help but for my son, only once he was properly medicated has his pain started to subside. He's currently on prilosec and zantac and neocate formula with a thickener added. The zantac is weight sensitive so needs to be adjusted regularly. Zantac alone wasn't enough for Billy and only now since being on the prilosec for 3 weeks are we seeing lots of improvement in his levels of pain. You're not alone, I know how awful it is to watch your child screaming like that and feel so helpless, but with the right combination you will be able to help him.
Mar 27, 2009
mommy2k
Hi Jonah's mom: Go with your motherly instincts. I have a 3 month old son who has silent reflux and I know just what it's like to have those bad days and nights. First I agee with everyone that you need to either make your doc listen or find a new one that will. Luckily with us our ped just listened to the symptoms of our son and prescribed meds. However, we still are struggling with the right meds and feedings. This forum has helped me get through those bad days and have wonderful advice. I do the towel thing in the crib and my son sleeps a little better that way. I think we all have those days that we just cry and feel helpless. Just keep going and you can always know that this site is here for you. Lots of good vibes and hugs to you. Good luck.
Mar 27, 2009
jonah's mom
new mommy to 7 week old Jonah James born 2/4/09. 7lbs 12oz. pic is 6 days old.
Update!
Thanks everyone for the advice and support. today was the first time i actually made an appt to go see the doctor in person, all other times were just over the phone with the nurse practitioner calling me back with the doctors answers to my questions. I went in, and told her all his symtoms and she was great!! She put him on zantac no problem! and she said to call her by monday or tuesday if i don't see any improvement and we will talk about other options. Thank Goodness! I started his first dose this evening and so far he is sleeping, so i am going to keep my fingers crossed. Thanks again for all your help :)
Mar 28, 2009
mommato3
It may take a while before the Zantac works longer than Monday or Tues. PPI's take about two weeks. I think Zantac maybe a week. Did she tell you how to give him the zantac (on an empty stomach, wait a certain amount after giving him the meds before feeding him) I don't know much about zantac just PPI's and my pedi didn't tell me anything. I found out on this website. Maybe someone whose child is on zantac could chime in.
Mar 28, 2009
jonah's mom
new mommy to 7 week old Jonah James born 2/4/09. 7lbs 12oz. pic is 6 days old.
She said to give 1 to 1&1/2mls twice a day. in the morning and evening. she said to give it before he eats but that i did not have to wait that long to feed him. he has his 2 month appt on april 6th, so i just might wait till then to see the results. i also switched to oatmeal in his bottle instead of rice last night. he slept better than he ever has. 5 hours then 4 hours after that. should i continue to give oatmeal in the bottle at every feeding?
Mar 28, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
You don't have to wait to feed after giving Zantac and it doesn't have to be on an empty stomach. We knew in three days that it wasn't going to work for us. As far as thickening, your little one is so young that the cereals might actually be making things worse.His little GI system is immature and it can take a long time for starches to leave the stomach. The more quickly the stomach can empty, the less opportunity for reflux. To thicken you might want to look into a product called simply thick it is xanthan gum (this one is non corn according to manufacturer)based. Another thickener called thick it is maltodextrin (corn) based. Smaller meals more frequently and upright for 30-45 minutes and maybe a dose of mylanta for immediate relief - that's what I would do to make it through for now. HTH
Mar 28, 2009
mommato3
You will be able to tell if the cereal is hurting him. If things all of a sudden get worse or you're seeing no improvement I would take out the cereal to see if that helps ( I would try that before changing meds just to make sure). Like the previous post said Simply Thick is a great thickener. I use this with my son because the cereal made things worse (not being hungry-delayed emptying and reflux, tummy issues were worse). Simply Thick is expensive but you can order some trial sizes for about $10 to see if it works for you. Go to their website. If you do all this and still no improvement then I would try a different medicine. Also Zantac is VERY weight sensitive so if he gains ANY weight the meds will prob. need to adjusted frequently. So keep an eye out for that. Good luck! You are in the right spot!
Apr 02, 2009
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
My son was born with silent reflux, he is 31 months old and still undiagnosed, many pedi dr and GI dr's later... He slept 10 - 15 minutes max and always had to be sitting up to in order to even sleep. Your baby sleeps for 3 hours and on tummy? Do you find your babes sleeps better sitting up at all? The Amby bed helped big time. Follow your instincts and don't stop pushing. Like I said I am still pushing 2.5 years later. Never give up. I wish you and yours the very best and am glad you found the site.
Apr 16, 2009
jonah's mom
new mommy to 7 week old Jonah James born 2/4/09. 7lbs 12oz. pic is 6 days old.
thanks for everyone's help. Jonah has been on zantac twice a day for 2 weeks now and he is like a whole new baby!
Check with your
doctor first!