HELP - Silent Reflux Baby Worse on Omeprazole - can't take it anymore

[happyface82]

I am really sorry you are having such a difficult time. My LO has silent reflux and its a horrible thing to have, but we don't have it that bad. You are doing really a great job, and of course you are right, you don't need a break you just need your lo to be better!!

Just a couple of thoughts. Give the milk a few more days, my lo is lactose intolerant and it took a good few days before we saw a difference with the new milk. We are on Nutramigen. Also, they can be intolerant to lactose and not have runny poos. My LO was constipated and doctor said it was because of that. She is now fine with the new milk.

Also, if you think that constipation is causing you problems could you ask for some lactulose? We tried it for a while and it did help us a lot.

I really hope they offer you some solutions fast!!

xxx

 

[hannahR]

Oh lovey, what a hard time for you. Hugs. xx

Your little girl sounds like my friends little boy and she tried all sorts of medication from the doc for silent reflux and they didnt work. In the end they thought he had a cows milk protein intoralence. He is on soya milk now and a lot better. You can buy soya milk in boots have you thought of maybe trying that. I will contact my friend and see if she has anymore advice for you. xxxx

 

[gordy]

Please don't read and run!

I really hope someone can help, sorry for the long post but I want to get the full story out and hope someone with experience can help.

LO was breastfed for 2 weeks, we thought she had colic as she was always crying and unsettled, constantly feeding and also projectile vomiting. Stopped BF and changed to formula

Was on Aptamil 1 for a few days and seemed better, then started to get colicky and have problems with wind and constipation

Changed to Aptamil Comfort, didn't help and made LO have painful wind from bottom end

Changed back to Aptamil 1 and persevered

4 weeks old - LO started becoming awful at some feeds but not all. Would scream/arch back/shake head/refuse bottle and was always really upset afterwards. Still though it was just colic so persevered.

5-6 weeks old - getting much much worse on the bottles, screaming most of the day and hardly ever sleeping, start to research and think she actually has silent reflux. Still projectile vomiting but only every other day or so.

6 weeks old - started on infant gaviscon which didn't help and made her horrendously constipated

6-7 weeks old - changed to SMA Staydown for reflux and things seem to settle down, looks like we have a changed baby. starts to eat more and sleeps much better at night although still poor through the day

7-8 weeks old - things start to get much worse again but we keep being fobbed off with colic, wind etc. by doctors and health visitors, weight gain has slowed down and baby not eating much. still bothered by constipation and often green poo. never sleeps either although still not too bad at night

8 - 9 weeks old - getting so much worse, took LO to a&e after 15hours of constant screaming and no eating. still feeds and sleeps quite well at night though. got to see a paediatrician who watched macy eat (or refuse to eat) and checked her over and properly diagnosed silent reflux. started on omeprazole and have a referral to see a consultant paediatrician on the 18th.

Now been on Omeprazole about 5 days and things are still getting so much worse. Every single feed is an absolute screaming match, no sleep at all during the day and she is even starting to refuse the night feeds which have always been her best. She seems to be happy-ish sometimes throughout the day but at feeds times she is horrendous and it takes ages to calm her down.

She takes around 1-2oz each feed now (was previously finishing 4 and the odd time 5) and sometimes completely refuses to eat for around 6 hours. Over 24 hours she'll have around 15-18oz - this is getting progressively worse though. Her last weight 2 weeks ago was 8lb6 although I won't be surprised if she's starting to lose weight now.

Also still has green poos and occasionally has blood in them - think this may just be the constipation though.

I'm at the end of my tether now, I can't take the crying any longer. I hate the fact that I have to put my LO to bed hungry because she won't eat, it breaks my heart. The only time I can really get her to take a bottle now is when she is in a deep sleep around 11pm, she usually finishes this bottle and it's tearing me up how hungry she must be. A bath doesn't even calm her down anymore and I spent most of the day rocking/shhushing/cuddling her to calm her down.

Yesterday I couldn't take the crying any longer and had to put her down in the pram while I went into another room for 2mins to take a breather, by the time I got back she was hysterical and I couldn't calm her down. My OH managed to calm her down when he came home from work and I've been haunted by guilt ever since.

She's hardly eaten at all today -

7am 1oz
10am 4oz
1.30pm 1.5oz
4.30pm 1.5oz
7.30pm 1.5 - 2oz


Will probably take a 4oz dreamfeed at 11pm and then around 2-3oz overnight, it's just not enough for a baby to be healthy at 9 and a half weeks!

I just want to help her.

Do you think she could also have a milk protein intolerance? She's never had diarrhoea though so I'm not sure.

I'm 99% sure it's definitely silent reflux as she has all the symptoms but she does seem to have been getting worse since starting the omeprazole. Although before starting it she was getting much worse anyway so I'm not sure.

I just can't take it anymore

xxx

PLEASE tell me what worked in the end (if anything)! Our 11 week old LO has pretty much the same symptoms and progression as yours did except i took him to a doctor a bit earlier and insisted it was reflux (i'm a nurse) so we got started on Omeprazole before the almost total refusal of feeds started. Oh and he's breastfed. apart from that, we could be talking about the same baby if we were to compare notes. Gaviscon worked for 1 day, Omeprazole for 2 days and we're back to square one... help? oh, and we were also fobbed off by various health "professionals" numerous times, labeled as "hysterical 1st time mum" and told it's anything from poor feeding/sleeping, wrong feeding technique, poor milk quality etc...i had to wait 12 hours in A&E with him to see a pediatrician DESPITE the fact it was the very same A&E that i actually work at on daily basis! i'm totally broken and can't watch him suffer like this for much longer

 

[Weezie123]

This suggestion may be completely unhelpful as I've never had a baby with this but have you tried carrying your baby around in a sling. This would keep them upright, reducing the reflux and even if they were screaming they would still feel comforted? I really feel for you

 

[sapphire1]

Have you tried cutting dairy from your diet? Reflux babies often have cow's milk protein intolerance which aggravates the reflux. Holly's reflux disappeared once she was switched to an elemental formula, before that she was on ranitidine and still suffered. Of course, it may not be that, but anything's worth a try. Maybe google the symptoms and see if LO has any? x x

 

[Farie]

What omeprazol dose is he on? and is it omeprazol or Losec (the former doesn't work as well for some babies)
Also it took over 10 days for LO to really improve on Losec (20mg a day - still on it. Omeprazol doesnt work for my LO at all, might as well be giving her sugar tabs)

If needed Losec can be combined with Ranitadene for added effect.
In some babies (particularly SR babies) thickeners actually make things worse

My LO also had issues and is on EleCare as she has CMPI

Feel free to PM me or stardust, we both dealt with reflux to the extreme

 

[michelle82]

Sounds very like the way Leo used to be, before was diagnosed with a Cows milk protien intolerance. Your lo has all the symptoms of an intolerance x

 

[AP]

I know this is a bumped thread but we have dealt with reflux for 2 blimmin years *sigh*
if omperazole/losec isn't doing the trick, it's most certainly time for a referral to GI. There's not much further you can go once you are on those meds.

Magically we are having peace from reflux, we cut out cows milk(although she's old enough for the alternatives)

 

[elliot]

I haven't read this whole thread, so not sure what other advice you've gotten, but I would definitely put her on a milk and soy free formula. I've heard they're very expensive, but I'm not sure.

My LO is EBF, so I'm not sure about formula, but I had an experience very much like yours and it made a huge difference when I stopped eating dairy and soy. My LO still spits up a lot, but she is a so much happier baby now, it's unbelievable. Definitely worth a try I would.

 

[stardust599]

This is an old thread.

We are through the worst of it now thank goodness

gordy in the end we ended up on 20mg omeprazole which finally worked, and sma number 1 seemed to be the best for her reflux, we tried neocate and nutramigen with no success. we early weaned at 11 weeks under a peadiatrician dietitian and a consultant paediatrician which made a HUGE difference too. at 5months, we weaned the omeprazole down to 15mg, at 7months down to 10mg and now at 10 months we are mainly medication free. we also manage her diet, avoid foods that causes flare ups and giving lactulose to ensure she stays free constipation as it also aggravates the reflux.

sometimes it flares up if she has a cold or a bad teething spell and i have to put her back on omeprazole 10mg for 2 or 3 weeks xx

 

[stardust599]

gordy what weight is your LO? I wouldn't bother with gaviscon, like Farie said it can make silent reflux worse and it's mainly helpful for projectile reflux!

try and get your doctor to prescribe at least 3mg omeprazole per kilo of your LO's weight. if it's generic omeprazole (our DR wouldn't prescribe LOSEC) you need to give it on an empty stomach 30mins before a feed or it's useless. i prefer to give the whole dose at once but I know Farie had better success splitting it morning and night. if it's generic omeprazole you can dissolve it in a sodium bicarbonate solution which also helps protect it from the stomach acid and make it more effective. boots own brand gripe water is sodium bicarbonate. hang in there for at least 3 weeks on the omeprazole as medication needs time to take affect and then the lining of the stomach and eosophogeous need time to heal.

i won't go into all the other stuff like raising the cot, feeding upright etc. as i'm guessing you've tried it all!

does your LO show any allergy signs? might be an idea to elimate things from your diet? Farie knows much more about this than me though.

hope it gets better soon xx

 

[stardust599]

and p.s sorry for the poor grammar and spelling, grumpy LO is on my knee!

 

[sheona28]

hi my lo is the same i am going to the hospital on monday and i aint moving till they sort him out i think he has a milk intolarnce i keep leaving im cry cause i thought it was his temper but it cant be i keep saying he needs different milk but they look at me like i am think i am close to hitting my hv

 

[GeorgeyGal]

hi my lo is the same i am going to the hospital on monday and i aint moving till they sort him out i think he has a milk intolarnce i keep leaving im cry cause i thought it was his temper but it cant be i keep saying he needs different milk but they look at me like i am think i am close to hitting my hv

i feel for ya hun, after doing all my own research and feeling confident i knew what my LO needs, I went down to A&E and asked for Ranitidine which worked great for LOs silent reflux, a few months later it wore off as LO gained weight so was put onto Omeprazole also, which worked great.

Also my bubs has cows milk protein intolerance, went to GP they said nah he's gained weight great its not that try Aptimal. Well I was having none of it so went out and bought Aptimal Pepti for the management of cows milk protein intolerance and it worked great!!! We are having 2 monthly appointments with a paedeatrician, who did say Nutrimigen probably would have been better but with Pepti you can buy over the counter at larger Boots and the little pharmacy in my village luckily, as I stumbled across it looking for regular Aptimal. I now get the Pepti on prescription.

I found GP and HV didnt understand the complexities of reflux or intolerance, Id give the Pepti ago, but as its not completed hydrolised you may need a prescription milk such as Nutrimigen or Neocate. x

Good luck at the hosp and for sticking to your guns, Id do as much research as you can and go armed with the facts. When we went to A&E the paed nurse we saw was very rude and implied I had imagined LOs reflux from looking on too many websites! The paed then gave me Gaviscon for LO, we tried it for a few days but was awful, constipation and reflux worse so went back and demanded Ranitidine, I think they just gave it to me to get rid of me as I refused to keep on with the infact gavi alongside Lactulose!

 

[kikopops]

Wish I had seen this post last year. The trouble must certainly be over by now. I had a baby EXACTLY like this. We switched to soy formula and after 3 month things were much much calmer, but not perfect. In retrospect, we had a very hypersensitive, strong and determined child. Our baby may have had celiac disease, but they didn't test for it then. All I can say is, get the baby tested, feed the baby soy milk, put it screaming back to bed and make sure that you always get help in so you can sleep, and get out once in a while so you don't go completely mad. I thought I had given birth to the Exorcist child. He is now a sweet, smart, helpful, loving, lactose intolerant, and gainfully employed young man, though he was a hellion as a teen. Welcome to life in all it gory glory!