reflux - day 10 in hospital!

[DonDonzx]

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!

And may I add, I was told to go home every time as his weight was not dropping an he is a 'chunky baby'. But in the last 10 days he's lost 7oz due to doctors taking his tube out saying if he's hungry he will take the bottle, he didnt/hasnt and keeps getting the tube put back in when they see he will not eat.

Theres some excellent reflux groups on FB.

If he has a CMPI which is sounds very definite then it will take time for his gut to heal. You need to be seen by a specialist rather than the average paediatrician.

ive battled the NHS for three years. I now take no shit when we have dealing with our team of doctors for dd. Just ask for the details if PALS to complain as well as setting out exactly what you want to happen. Several of the drugs tou mention do take time to work - but his gut needs to heal first.

Good luck.

Hope you are ok? What are the doctors saying? when they do a ward round do they give you a chance to talk/ask questions?

Have you been staying in for 10 days?

I presume they have checked for pyloric stenosis, some cases do slip through and have later diagnosis (later as in not newborn)?

why have they taken him off the neocate and trying with pepti and nutramigin? If he is as sensitive as he sounds I think he would need the neocate. Dd was very sensitive she still can't do cow milk now at 2.5. Still has neocate. They will want you to have the others and not neocate as it is loads cheaper. Sounds like you are having such a tough time feel for you we were in 3 nights.

Another thing to say is that it will take up to 3 weeks for the cows milk protein to leave his body so that could be why things are still bad. Have you seen an allergy specialist yet?

My son was prem and had bad reflux . He was on ranitidine and domperidone . He cried non stop for the first year . It was awful.!!! I eventually weaned him off the drugs ( no help from paediatrician ) and he is now fine albeit with a sensitive gag reflex .. I feel you pain trying to get help .. No one really helped us they just have us more drugs and sent us on our way .. Be careful though once the paed told us to stop the drugs ( long story ) and he went blue and stopped breathing . Very frightening and luckily the ambulance wasn't far away .. I hope you are ok and get the help you need .

My DS1 now 4 still has CMPI and went onto Nutrimegen (spelling?) at 6 months, when I stopped BF and was also on ranitidine, his reflux contributed to pneumonia 3 times in first year. Took a lot of pushing to get right consultant, now he just avoids cows milk and has asthma - Ds2 could not tolerate Nutrimegen and had to have Neocate (sp) which he had till he was 2 and now does nt have any milk, except a splash of goats milk on cereal. Had a week in hospital when 5 or 6 months (first time he had cows milk) and was very poorly, the dairy stayed in his system for ten days or so and stripped his gut, made him bleed, his nappies were dark dark green with blood.

Anyway just sharing case any of these symptoms help relate to something with your little one.

I hope you get some answers soon, how is he during the hours between feeds? Is he happy? Playing? Interaction? Or does your mummy instinct feel like something else is going on?

Another thing. poo nap pies, are they dark green like spinach? sort of jellified? Smell vinegary? these are all signs too.

Ds2 has severe CMPA and reflux. Dark green nappies are normal on neocate btw because of how broken down it is. However, we found neocate made ds2's reflux much worse - in fact we were cleaning up projectile vomit from him for 3 years around 6 times per day. He could not have aptimil pepti or nutramigen as he had allergic reactions to both these.

We spent 3 years being told that neocate was not the cause of his problems, until one nurse suggested that we tried stopping it. We did and he was like a different boy within days. By that time, he was old enough that we could use oat milk for him. He does still have reflux, but nothing like when he was on neocate.

Sorry, no advise really as ds2 was bf until 13 months, but I do sympathise. He were back and forward to doctors constantly. Ds2 also never ate much whilst on neocate either, in fact, he would not eat voluntarily at all and once went 4 days without eating at all.

Keep on at the doctors, though we found none were much good with ds2.

Have they looked into pyloric stenosis? I would push them for a scan.

It normally develops from around 10 weeks, it sounds like it could be from what you have described

how is it going ?