Posted By Posting
Oct 23, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Can I just vent...
Sometimes it feels like Im the only one on the planet who has found NOTHING to help my little boys reflux. Ive been searching high and low the last three months and have subjected this poor baby to all kinds of medicines, feeds, powders, tests , .. we even did cranial osteopathy! You'd have thougt by now SOMEHITNG would have made a difference but its as if I never even tried. Im so jelous of those Mommies who can say "oh, this worked wonders" or "after we did this it was like a new baby!" or even "this helped"- I cant even say THAT! NOTHING has helped! This poor child has only been on the planet three months and I can imagine he has spent a good deal of those three months in pain. The fact that a major source of pleasure for any baby , eating , is for him nothing but anxiety and discomfort is just so hard for me to accept. I cant stop looking for hope , yet I am just feeling so incredibly hopeless right now. Thnaks for the vent , I know you Mommies understand sometimes ya just need to explode a little bit.
Oct 23, 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! I know that words aren't gonna make you feel much better till he's better, but...You might feel a little better knowing that Maggie was 2mos before I even figured out she had reflux. She spent 2mos screaming at least 3hrs a day and not sleeping. We were just too ignorant/uninformed to figure it out. I tell you that because--one day your moment will come to say those things you hate to hear people say. The wait is the hardest thing we've ever done because our babies are in pain and we feel useless. We're supposed to be able to fix everything right?

Here we all understand the ups and downs that you will go through. Please vent with us any time. We have all vented many many times.

Oct 23, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
your words are so true! i get so disheartened when jos has a rough feeding! your words are dead on!!!!!!
Oct 23, 2008
jedd'smommy
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
TIME. time was the BEST thing that helped Jedd the most. That and a high enough PPI and motility drug. But time and then walking upright really good was the combination for us.

The hard thing to remember is the fact that no amount of meds it gonna make these little ones stop vomitting. Jedd's reflux is completely under control and he goes at least once per day.

HUGS it is soo completly hard. I totoally understand. Therw were dyas I never thought I'd live to see the next day. Esp when EVER feed is comign ALL back up. but you can do it I promise.

Oct 23, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Thanks guys, your words really do make me feel better. Its funny, you have a good week and you think you can forget about all this reflux nonsense-maybe things will be "normal" from now on(!)...... then the reflux monster comes back.... ggrrrr
Oct 23, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((hugs))) That's the hard thing, isn't it? You just want to make it better but sometimes you can't. You *think* it's getting better, and then it comes back full force. Sigh. However, it will get better with time...it really will! Which doesn't really help now, I know. There is just something that is distressing to a mother's soul when you can't feed your baby. It goes against everything natural about mothering, whether you're baby is a few months old or nearly a teenager. Feel free to vent any time, we all understand here and it sure does help to be able to talk about it!
Oct 23, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Keira didn't have the constant spit up/vomitting spells like the others but she had the pain and the acid coming back up her throat. We were in the midst of getting her on the right meds and formula and it was a nightmare. I remember those days very well. My heart goes out to you big time. I agree w/ Jedd's mommy that TIME is the biggest help. You're a great mommy and don't think because the reflux is still crazy that it's because YOU didn't find a "fix" for it. Hugs to you and your little one! We're here for ya.
Oct 23, 2008
popz4120
Bryson (3/06), former Neocate, Nexium, and Reglan baby. Diagnosed with peanut allergy and asthma. Weaned from meds in Spring 0f 08. Brother, Parker (6/04), was also on Prevacid and Pregestimil (formula) as an infant.
It is soooo hard to see such a little child suffer. With our first child he screamed all the time and fought feedings and he was not diagnosed until about 8 weeks. It took trying two different medications until something worked for him. He was also allergic to milk so we had to find the right formula that he could tolerate. As I was reading your post, something struck me in your summary of Hunter. I noticed that you said he chokes and coughs during feedings. I know that reflux babies can cough and choke during feedings, but is it possible that he could be aspirating the milk. Our second son had a swallow study completed and was diagnosed with aspiration. We had to thicken his feedings. That may not be the reason for his coughing and choking but it struck me as our son did the same thing. Which like I said could also be the reflux. If he continues, you may want to question his pedi about possible aspiration. Does he ever sound wheezy or chest rattling? Just a thought. I could be way off!
Oct 23, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
Time is what helped Elyse too. She tried almost all the meds and of course all the tips for reflux babies. 17 mos next week and we are still dealing with reflux but it is waaaaay better than it was. You are still in the thick of it and like melissa said, your day will come when you can say those things...I NEVER thought ELyse would stop the constant puking and Donessa and others kept telling me it would stop and we are down to about every other week now! hang in there
Oct 23, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Thanks again guys! I guess we are just going to have to wait it out and hope solids help as well as time. You know whats sad? Everyone is always talking about how fast their LO grow up, and here I am waiting desprately for it! Popz- He has always been a loud breather. Ive actually just copped on that his feeds might need to be thickened...even more than they already are. I talked to the pharmacist about getting a Rx from the doc. I been using rice cereal the last day and he seems (am I dreaming this??) to be coughing LESS not gone though..we will have to see, but thanks for the suggestion Im going to mention it to the ped :)
Oct 23, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Not that it's any comfort, but you're not alone. I was just saying almost the same thing to my hubby last night about our little one. It is very frustrating because, as a parent, you just want your baby to be happy and healthy. It sucks when you can't make that happen no matter how hard you try. You're doing the best you can. Just try to shower your little one with lots of kisses and cuddles in the meantime!
Oct 23, 2008
abby'smom
I feel the same way
Hi! I'm a new gerd mom to a baby girl 6 months old. She was diagnosed with gerd at 4 weeks. She screams all day long. She doesn't vomit but she's just now starting to spit up a lot. My family kept telling me that she was colic but I knew better. I don't know what colic is but gerd is horrible. I guess she is a silent refluxer. I'm soooooo confused by her because she's teething now too. A lot of these symptoms mimic teething. She has wet burps and she spends her days sitting upright in her bouncy seat. Everyday! I can't put her in the floor because she screams. She absolutely hates tummy time. She was on zantac for 5 months but it didn't work now she's on prevacid and it ain't working either. She has to be carried constantly. I'm depressed and stressed out. I know how you feel when you say you envy those who have found medicine to work. I also feel hopeless. I feel as though i'm at the end of my rope. The strange thing is the dr. didn't even run tests she just went by my complaints. I don't understand that? I'm going to have her tested for sure on monday though. Hang in there none of us are never alone.
Oct 24, 2008
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
(((big hugs))). There isn't a whole lot that I can add other than to say it WILL get better - I couldn't believe it when people kept telling me that during our really dark reflux days, but eventually things got better and better until the reflux monster left us all together (well for the most part). Just try to enjoy this time - I know it's hard, but they are only little for a short time. Don't be like me - I look back on Halley's early months with sadness for all that I missed because I was in such a hurry for time to pass so that my she would feel better. Keep up the good mommying - you may not feel like you're doing a good job, but trust me, you are. Hang in there (and feel free to vent any time).
Oct 24, 2008
natalie
i, too, know that it can feel so hopeless at times. just when i think it is improving it rears its ugly head again. just know that you aren't alone. when i say my prayers i send up one for all us reflux moms. i think the others are right . . . and i'm hoping that time is all it will take. at least that's what the doctors keep telling me! we just need to remember that our babies are NOT their reflux . . . that is not their defining characteristic . . . although at times it feels that way for me. i read once that being a mother means being near . . . and that is the best gift we can give our babies while we ride this out with them. hugs to you!!
Check with your
doctor first!