Reflux support group

[littlepuddingsmum]

Hello! This is the first time I've ever used this site and I've really no idea what I'm doing or whether this will reach the people who I hope it will be useful but...My little boy (now nearly 10 months) has reflux. It has been an absolute nightmare! Don't get me wrong, he is an absolute joy, but the reflux is NOT. Not for us, not for him! Because of what we've been through, because of the battle we've had to get to the bottom of it (we're still not really there - nothing's helped him really), because it was so lonely and isolating it's made me want to do something to help other parents who have kids with reflux and just need some support. The reason for me coming on here is to find parents who have been through the same and ask what would have helped them? I'd like to set up a support group but I know that one that functioned at, say, 10am on a Tuesday would have been no good for me as I was battling to keep Noah to a routine even though it would take FOREVER to settle him for a nap because of his tummy. I felt I was alone and I don't want other Mum's to feel that. Any ideas? I've thought of maybe setting up a support network, mum's who've been through it offering to buddy up with another Mum, be there on the end of the phone or visit sometimes and then all meet as agroup maybe once a month? I don't know though. Any feedback would REALLY be appreciated!

[iarel]

hi

my DD is 5 months and has reflux. luckily i knew the signs, so she was diagnosed when she was 1 months old. my DS had it 7 years ago and it was horrendous. after 6 months of him screaming constantly and not settling for sleep, i took him to a private doctor and it was diagnosed immediately after just a few questions. i felt cheated as the gaviscon that was prescribed started to work almost immediately. for months i was just dismissed as a paranoid first time mum, with a 'colic' baby. i was told that he might have to have the little operation if it didn't clear up at 12 months, but luckily it corrected itself by then. i think it's a brilliant idea to start a support group as there definitely isn't enough information and help available. unfortunately the gaviscon isn't as effective this time around controlling the reflux itself, but as the heartburn is sorted, i have has a much more pleasant and enjoyable time...apart from being covered in baby sick

[littlepuddingsmum]

Thank you for replying iarel...I didn't know if anyone would I too was told 'he just had bad wind, it'll clear up when he's 3 months'.....and on and on that went - it'll be better when he's weaned, when he can sit up, when he's 8/9 months....no, no, no!!! It's really been no fun at all BUT I'd love to bring something positive out of it. I know it was seven years ago for you (and I'm beginning to forget just how bad it was at the start already) but what would have helped you most....someone you could chat to on the phone, a weekly group you could go to where you could chat to other Mum's going through the same stuff and where maybe visiting speakers - paediatricians etc came, a mix of all that or something completely different? I just don't want to set something up that works in my head but doesn't actually work for Mum's going through it...so I'm trying to pick Mummy brains first

[iarel]

weekly groups are brilliant, but would not help those who have no transport or live in rural settings. maybe initallly set up a web group that gives general information on reflux from pediatricians (pre-filled question and answer page) and where you could chat to other mums. if you have enough members you could start up local groups and maybe a volunteer phone service for those further out. as i only found out about reflux after my DS was born, i believe that there should be leaflets distributed in ante-natal clinics, so that would be parents can be familiar with it, recognise the signs and know where and how to get help if they think that their baby has reflux

[littlepuddingsmum]

Thank you for all your thoughts I definitely agree with the leaflet thing...and that's something I could do. I'm thinking of just making the group local to start with, my local childrens centre will probably host it...but I'm going to have to take it on. I've talked to other Mums who would love to help but don't have time for a weekly thing so I decided to try and find what there was a need for and see if there's another way of doing it.

[Fizzylemonade]

Hi to you both, have recently been looking into reflux for my friend whose baby has just been diagnosed. I am a few years down the line from it all now.

Ds1 is now 5, he had it, used to projectile vomit with spectacular ease but it never bothered him. He didn't have any medication as he gained weight, and I bought a carpet cleaner

Ds2 is now 2 but he was a different kettle of fish! He had silent reflux, it was horrific. HV was useless, GP was lovely, prescribed gaviscon which didn't work, we were the referred to paediatrician. He was fantastic, and fortunately ds2 threw up clear liquid with white flecks in just as the paed doc was examining him! Well timed.

He was prescribed a formula called Enfamil AR and it didn't stop the reflux as such but as it had an acid neutraliser and a thickener that helped a bit he didn't scream the place down. He was on it until he was 14 months! It didn't get better when he weaned/crawled/walked etc etc he just grew out of it thank god.

I came across this website that I thought was useful but I do think a local support group is a great idea. Maybe when someone can't make it they could submit a question or story about their own situation somehow.

www.littlerefluxers.co.uk/

[Spaceman]

Hiya, my DS (5 months) has reflux. I stink of vomit all the time - so does he. He's either wanting to feed or puke nit seems every minute of the day. Been to the docs, who gave us Gaviscon. It made him worse - more pain as he couldn't easily bring the sick up - so we stopped giving it. The best thing I've found that has helped is to have a sense of humour, believe that this is just a short phase that he will grow out of and grit ones teeth. It's truely horrendous. Very common too as everyone seems to know people who has had to deal with it.

[littlepuddingsmum]

Thank you fizzylemonade for the encouragement about the group. Enfamil AR has been the only thing that's helped Noah too. I breastfed with great difficulty for the first 5 months and when I finally gave in (Noah used to arch and pull away from the breast and it was EXHAUSTING) we were never told about Enfamil from a doc but had to hear about it 2 months down the line from a friend! VERY frustrating! Spaceman...I'm right there with you! We had the same thing with the Gaviscon, it hurt Noah more. I know Reflux is common but when it's really severe it is rubbish (as you know) and that's why I've been driven to think about this support group thing. Would a group have been/be any good to you?

[Spaceman]

Yes, I do think it would have helped a lot actually. We're at the tail end of it now as DS is much better although is still sicky, but I'd have welcomed a weekly forum with other mums when things were more prominent, so I hope you are able to get something sorted.