GOR and Sikent Reflux HELP

[LB80]

Hi Im new to this but desperately need some advice and help. My beautiful boy has GOS and Silent Reflux. Its absolutely heartbreaking to watch him everyday and night vomit and scream in pain. He is on omeprazole and domperidone (previously tried gaviscon and ranitidine) but meds making no difference. Back at the hospital today but dreading it as I know they will just send us home.
Has anyone any ideas to help? Keeping him upright makes no difference, not moving him after a feed doesnt help nor does elevating his bed. We have tried everything. Very stressful and upsetting.
He is nearly 8 weeks old ??

Yay that sounds like you've both had a good day!

Ive just had a call from the dietician at the hospital. To go see her tomorrow with Bub about the dairy free diet. Vomiting has greatly reduced since weekend and his screaming episodes are a lot better too!! He is still having them and they are awful when they happen but no where near as many as we were having. Ive filmed him to show the doctors. Got follow up app, its 4 weeks away!! So much for "see you in 2 weeks"!!

We had our app with the dietician today. Got sent home with 2 tins of hypoallergenic formula. She said to gradually introduce that and keep expressing to maintain my milk supply or I can keep going dairy free for another week and see if there is any improvement.
Bub had one of his post feed screaming episodes while we were there and she said "he is unhappy" it was so hard hearing someone say that and i left in tears.
I dont know what to do for best. She said "it may just be reflux"! But have to try the dairy free diet in case it is an intolerance to cows milk.
Ive been so upset and feel so guilty. Im so confused at what to do.

If I was you id express to maintain your milk and give him the milk they have given. Worth a try?
Ive just got back from Sheffield as went to see dr Thomson and hes sending ds for cameras down him and up him plus another few more tests. Should get a letter pretty quick he said

Why would you want to replace breast milk with cow's milk formula?? I know it's hydrolysed but still..... The best thing for a child with cow's milk allergy is breast milk with allergens removed.

What was the rationale she gave for introducing formula?

I know that generally the mumsnet wisdom is to follow all medical advice but I have to say I have found most HCPs, including dieticians, to be quite woefully uninformed about breastfeeding.

I found that too. I think unfortunately HCP tend to be more comfortable with something quantifiable and formula ticks that box. Research tends to favour formula trails as exclusively breastfed babies are uncommon and difficult recruit I suppose. NICE recommend supporting breastfeeding in allergic babies as the first line where possible.

The dietician we saw was clueless about breastfeeding and told me it had not nutritional value after a year...

I sorry she made you feel like shit. If it's any consolation the allergist we saw told me I had been starving DS and berated me for not starting neocate to improve his weight gain. I then found him on the neocate website

Sorry, all these different opinions fro dieticians and random internet posters is probably not helping with your being confused . You could always try emailing the consultant mentioned above in Sheffield and see if he can respond in general terms about whether a trial of hydrolysed formula is advisable in a bf baby when the mother is already excluding dairy and soy.

Hi sorry been a busy couple of days. So Ive read through all the leaflets the dietician gave me, continued on DF diet and "touch wood" bub has (dare I say it and jinx it) improved. Still having screaming episodes but not as many and not lasting as long. For last couple of days he has only vomited once a day. Can still hear all the rumbles abd gurgles of silent reflux and he is upset with this.
The HV offered me extra support as my mood is low. Not sure how I feel bout that.
Hubby not convinced bub has CMPI but given the "improvement " in last few days and Im still DF I think it is that and GR/SR. X

That's great news, pleased things are improving. It does take a while for the proteins leave both your bodies and the gut to recover.

DH was in denial about CMPA for almost a year, which was hard. I felt very undermined and unsupported.

I think lots of people don't understand allergies and disbelieve them for some reason. Ironically my SIL bub turned out to be CMPA too so it runs in his family!

Take the support if you get along with the HV. I had extra visits due to PND and it helped a lot. It gets better, honestly it does. You have done brilliantly for your DS, allergies are a tough call.

That's great news! Well done you. Don't worry about DH....

well done!!

LB just spotted your posts. My ds had awful reflux and CMPA intolerance. We had an especially awful time from about 8 weeks for a few weeks lots of screaming and writhing.

We just kept getting told it will be better when he's weaned, sitting, over a year. It didn't get better at any of those points but it has slowly improved and at 6 he has it under control (ie he swallows if he can feel himself refluxing) and it doesn't now give any issues for him.

He's under a paediatric gastroenterologist now and takes omeprazole as he has eosinophilic Oesophagiits and dairy allergy.

Hopefully your ds will improve rapidly all by himself but don't be afraid to fight his corner, reflux and allergies seem to be very underated for how distressing they can be for a child and their parents. If you don't feel that paeds are helping push for a paediatric gastroenterology referral and remember to take turns taking time out from it we used to do 1 hour each when things were really bad.

Hi MillyMollyMardy
Thanks for your post. Dont know what I would do If I didnt have advice from mums on here. We were back at the dietician today. Continuing with DF diet still but to stop soya and egg now as bub came out in a rash :0(
He fed while we were there and vomited then the screaming began so she saw first hand him in action! Domperidone been increased and back on ranitidine.
I had some time out on sunday, about 4 hours away on my own so hubby had the children. He managed well! X

It's always good when they vomit in the clinic. My son puking in the GP's surgery was the final push for the Gastroenterology referral. They were mid "shall we just see how it goes..."

We had an awful start to the night last night, DS was really unsettled and screaming until midnight. Had another episode this morning. Could this be linked to the ranitidine?? He was improving before we restarted that. Just when we think we have turned a corner we are thrown again :0(

Has he been moved back from omeprazole to ranitidine? If he is worse following that I am guessing it's to do with the discontinuation of omeprazole rather than the reintroduction of ranitidine IYSWIM.

Morning. No he was taken off omep a while ago as he was sick as soon as we gave it and very distressed so doc said to stop.
Dietician cancelling our app with the Reg as she said its pointless and we need to be seeing a paediatrician or consultant.

I found the ranitidine took a while to work as it reduces the acid production but there's already lots of irritation and inflammation that has to heal.

Lansoprazole made my son puke but he was OK with the Omeprazole.

Hope tonight is a bit better.

Well bub has had a few upsetting days. Really screaming again and vomiting increased :0( feeling helpless. Just when I think Ive turned a corner we are back to the beginning again. Thankfully bowels have been ok and no firther rashes since stopping soya and eggs.

Oh no, sorry things are not on the up. I fully remember that dread feeling that things are never going to get better. It's positive that the rashes have gone since you cut stuff out, though. It's got to be doing something.

I hope your appt with the consultant comes through soon.

It's unusual for omeprazole to cause instant vomiting. I wonder if you could try lansoprazole instead? The good thing about it is that it comes in dispersible strawberry-flavoured fastabs that you can smear inside your baby's cheek and wash it down with a bit of cool boiled water.

Hello, how are things today?

Do you know the name of the consultant you have been referred to? If you can afford it, it might be worthwhile ringing their NHS secretary as they could tell you if they have any private clinics so you can be seen sooner. The NHs secretary should be able to give you details of the private secretary.

Hi
We have had some good days. Bub is smiling, kicking and babbling away. We are still having the odd upset periods but we are managing to settle him quicker and they are not as bad as they have been. Its so lovely to see him smile and interact now. Just managing with domperidone now and Im 4 1/2 weeks DF, over 2 weeks SF and EF. The dietician was really pushing for me to change to the nutramigen formula last week but Im glad we waited now.
Hope everyone is ok and their LOs are too x

Woo hoo! And I am also glad for you you're still BF. Long may it continue.

Good to see things are on the turn and well done on the bf too.

That's really great news. Glad the BFing is going well too