reflux baby! now in hospital!

[finleysmummyx]

LONG STORY
So
My little boy now 19 weeks old has always been very unsettled, at 5 weeks old I took him to his GP and explained all the crying constantly and he asked about family allergies (his dad allergic to cows milk) so he instantly gave us neocate for cows milk protein allergy and told us if he doesn't like the milk put him back on his normal milk! Obviously he didn't like neocate so we went back to cow and gate. Took him back to his GP who suggested maybe its reflux and he gave us infant gaviscon - no change what so ever just a very constipated upset baby!

So for the next 7 weeks things got worse and worse until at 12 weeks old he starts completely refusing bottles, arching back, screaming house down + vomiting. Took him to his health visitor who said its definately reflux AND cows milk allergy and get him to a+e as his GP is useless!
That night we took him a+e where peadiatrician told us to go back to neocate and stick with it as he will soon realise he has to drink it and carry on with gaviscon. The following week my baby was completely different, no crying very content. Until one morning. I got him ready to go out tried giving him a bottle and he point blank refused it and this is where it really started bad!
Took him a+e again at about 14 weeks old as he was hardly getting any milk, and got sent home and told to persevere.
15 weeks old back to a+e got started on ranitidine, no change still refusing bottles but told to persevere.
16 weeks old back to a+e got his ranitidine dose highered told to persevere and off home we went.
17 weeks old back to a+e and got domperidone started aswell as ranitidine. No CHANGE.
18 weeks old paediatrician appointment told me to persevere things will get better and stop the gaviscon.
2 days later back to a+e as he only had 4oz in 24 hours, GOT SENT HOME!
The next day community nurses rang and asked how he is and we told them he's had 4oz since the day before and he sounds like he's getting a chest infection so we were advised to bring him to observation ward where we were told he has bronchitis and this is why he's not eating! I explained its been going on for weeks but they didn't listen and tried sending me home with a leaflet on bronchitis. I refused to go anywhere! We were put on a ward on friday night where he had a tube put up his nose down to his stomach to feed him then on sunday his milk changed from neocate to nutramigen but none of this went down orally it all went down the tube and he projectile vomited every bottle up. Tuesday he was changed from nutramigen to aptamil pepti 1 and for the first time since his hospital stay he drank 1oz! Still refusing tho, then thursday night he was taken off ranitidine and put on omeprazole, still refusing and here we are on day 10 of being in hospital not knowing when we can go home!
Anybody else been through this?
Please tell me its gonna get better soon!

Oh you poor thing. Both DC have had reflux but never this bad you must be beside yourself with worry.

With DD we didn't get to opremazole as domperidone worked for her but she was a silent refluxer. I've heard good things about opremazole though.

I wouldn't let up with bugging them if things don't improve but it is worth knowing that if there has been ongoing reflux it might take a short while for the oesophagus to start healing before you see the full extent of the affect of the medicine but you should still see an improvement.

Maybe ask them how quickly they would expect to see an improvement.

But you poor thing and well done for persevering so much. You have been a great mum.

my daughter was hospitalized when she was 10 days old for reflux as she was vomiting up pools of everything, she screamed solidly full tilt one evening from 8pm to 2am, without a break (I almost went mad). the next day I couldnt rouse her awake and I was really frightened. I have been there and it's very frightening. It sounds like you have the right attitude by refusing to leave. Whats his weight like? If he is not losing weight, they will not take it as seriously as if he is. Gaviscon works by thickening up the contents of the stomach so it's harder to throw up, it had no affect on pain levels for us. Whereas omeprazole targets the acid and takes the pain away. I read so much online I was desperate and one thing I suggested to my doctor was maybe to up the dose. just remember as the baby grows the dose should be more otherwise it will become less effective as the child gets bigger. Saying this, no doctor suggested this, it was something I found out and to be honest, I am annoyed they didn't suggest it. for the first few months I didn't take my daughter anywhere due to her severe vommiting so I feel your pain.
I hold you hand right now as things move slowly in hospital. We tried a number of things over 5 days to get her to feed and just as we thought it was working she would throw up again --Grrrr!
Hang in there, tell doctors you are afraid for his weight. as far as I know! not losing weight is a good sign so keep getting them to check.

Really sorry you're going through this, it must be such a worry. My DS had severe reflux, which he only outgrew age 3.

Omeorazole 20mg (adult dose) worked for us. I felt Domperidone & Were useless. Our next step would have been Ondansetron.

None of these treatments reduced the amount of vomiting. However I persevered with the Omeorazole as it's role is to protect the oesophagus & reduce damage from the acidic stomach contents. Although it's my understanding it takes a good 2/3 weeks to have a full effect.

Have you seen a consultant paediatric gastroenterologist? Hopefully you will be under a Gastro consultant's admission in hospital. If not, ask for one to be involved & insist upon follow-up in outpatients once discharged.

It's really, really hard with a reflux baby. Hoping the hospital admission is successful & things improve.

Gosh can really sympathise.

My daughter was similar. I'm confused though did he tolerate the ng feeds? Or vomit those up?

oh, just wanted to add that the medication never really stopped her vomiting, just stopped the pain. She eventually grew out of the reflux.

Thank you for all your replys its been a tough couple of weeks. Due to him gaining weight I wasn't taken seriously at all its only the last 3 weeks his weight has slowed down and in the last week he's lost 7oz! The vomiting was bad on neocate I had to add carobel into his bottles which calmed it down but when they fed him nutramigen through the ng tube he didn't keep one bottle down, he still has the ng tube in and only vomits every other bottle and nowhere near as much.
Also he was put under a feeding specialist on friday who is confident she is going to sort this out! A doctor tried sending me home on tuesday saying he's fine he's gaining weight when they hadn't even weighed him, then they did weigh him to find he'd lost 7oz!
Looks like I'm going to be here a while as he has to have 5 150ml bottles a day and is only taking upto 90mls a day orally whilst still screaming and arching his back. I have been told I should see a huge improvement in the next week with the omeprazole so fingers crossed..

Fingers crossed the omeprazole works.

Hope it works, let us know how you are getting on.