Reflux event

[ellnlol]

Hi
as some of you know I have been approaching MNHQ to ask if they would support organise a reflux 'event' - maybe a webchat as a TV programme (my first idea!) seems a bit ambitious... I'm thinking maybe borrowing an hour from one of the paeds or consultants who 'gets it' and has been really helpful/supportive to any of you, whether by helping your LO or by helping you to deal with the 'stuff' that goes with parenting a reflux baby. Don't know if that's a crazy idea?

MNTowers has asked me to start a new thread to see if there is sufficient support for this idea, and if there are suggestions about the type of event or names of experts we might want to approach.

If you think it would be helpful, please add a message, and ask anyone else to do the same - they don't have to be a reflux survivor!

fumblina that's hilarious in a bad way! HAd a similar situation at our GP - but he's been excellent throughout so it was more just comical - but he said to me "so, is (DS) still sick a lot?". At that very second, as if in response, DS produced a quite remarkably large splat on the surgery carpet, quickly followed by another one 2 minutes later.

Oh God katey13, how awful.

Right, sorry for being awol, been wiping up vom. Do we still need this in Chat to get a higher profile?

Yes please move this to Chat as I doubt many m'ners visit this board unless they are are at the beginning or end of BF/FF - if I hadn't been establishing BF with DD2 this week I wouldn't have spotted it.

waves to Nann from the april postnatal group
I agree that you don't hear about it at the AN stage and if it happens to your DC, it would be nice to be better prepared for the exorcist like vomiting abilities of a refluxy baby. TBH it's only now that i have a DD who is a non refluxy baby that I realise quite how bad it was with my DS as I had nothing to compare it to and didn't know any better at the time. Gaviscon, keeping DS upright for at least 20mins after each feed and numerous clothes changes everyday were all i'd known.

If anyone knows how to move this to chat we really need that to happen... I don't know how to do it but we need to keep driving this forwards otherwise it'll just fizzle out. I know we're all knackered and some days just barely hanging on, but if we can put reflux on the mainstream map, maybe things will be easier for the next round of reflux families...?
I'm off to see family for a few days, take care all and enjoy the weather/bank holidays. X

I've posted a link on chat. Fingers crossed.

saw the thread on _chat so here I am.

I have a disabled child of 4.5 yrs who still has severe GORD which affects his breathing as he aspirates what he refluxes therefore causing bronchiectasis (damage to lungs from inhaled stomach acid) and so he was tube fed via pump till he was 2.8yrs. The reflux still affects his breathing significantly nowadays and has also resulted in a recent diagnosis of Sandifers syndrome. He is on the list for surgery to rectify his reflux with a fundii plication and mickey button but he has other things going on that are being dealt with first.

As mentioned earlier feeding positions in wee babies is vital info to any parent but also sleeping positions are key too. There are chairs and wedges for cots out there available but you have to really dig them out. Or you did then anyway.

One of the things less discussed is the effect of long term reflux on the childs eating/drinking habits as strong aversions to foods, drinks and particularly texture and is something that would be useful to explore.

My DS suffered reflux but so few people know about it. I spent months isolated at home covered in vomit and for days unable to get dressed because i knew I would be vomited on again.

I seriously doubt whether I could go through it again and it's making ne struggle to contemplate another child even though I desperately want one.

Please this needs making more known. It needs more people talking about it and we need more support for those going through it

I think it's a great idea.

my ds only slept for 4 hours a night and sick everytime he had his milk. I had everybody including family, HV, GPs telling me it was normal or colic but at an early age. This carried on for the first 3 weeks after he was born. Eventually my DH decided that this wasn't normal and called the emergency doctor who luckily walked in as DS was sick everywhere. He sent him straight to hospital where he was diagnosed and prescribed gaviscon. This was very effective. However the biggest problem to come out of this was me as a mother. I believe now I had severe PND as as result of this. I couldn't bond and often had suicidal thoughts. It took 6 years before i had another child. People should bemade aware that this isn't just a baby that is more sick than normal but a condition that can take over in those most important months of yours and your childs life

Only just got back from a few days with no MN and found myself directed here. We are having a mare with the reflux at the mo. DS1 was bad and it seemed like this one was a bit better but he has been slowly getting worse and is now getting through many an outfit and doesn't get to show off any cute little outfits due to the constant need for a bib lol. I am glad I have had experience of it before as it does make it all less of a worry but still not much fun.
I am ff and decided to give the sma staydown milk a go but it really doesn't seem to help have had Dr Brown bottles recommended so will probably be trying those when I get to the shops.
I remember with DS1 visiting people and constantly apologising and cleaning up, I am readying myself for the same thing again.

It really can be miserable but it will pass.....eventually. I know DS2 is growing and otherwise doing well so am trying to chill but it can be hard, and few people really understand unless they have to deal with it themselves.
I will be bringing it up at the 6 week check and hopefully get some gaviscon, but this wasn't really effective with my first so we will see if it helps this time.

Thanks IloveGreg for posting the link from chat. I'll maybe give it until the end of the month then contact MNTowers again to see if they're convinced enough to move this forwards. Maybe it's not so much the number of families involved, but the magnitude of the impact? And boy, it's a biggie...
We've had a (comparatively) easy month or so but are back on a downwards slide again - I suspect dd has put on weight and needs her Ranitidine upping to cope. We're averaging 4 wake ups a night - could just be a growth spurt I suppose (we've just turned 9 months) but dd seems awfully sore to be just growing .
Anyways... hang in there all, take good care of yourselves and your los, and thank you for posting.

We are off to the gp tomorrow for an official diagnosis after being diagnosed by hv today :( off to google for more info so count me in for a webchat

Very interested in this, have lurked on the reflux support board for some time. I have a 21 week daughter who has cow's milk allergy and severe reflux. She is on Nutramigen thickened with Carobel for her feeds. She is also on a very hefty dose of Ranitidine, gaviscon syrup and 2.5 ml Infacol before every feed so as you can imagine my changing bag is like a portable science lab.

We have been in and out of hospital, have been in the medical ward and the surgical ward, had suspected pyloric stenosis and had about twenty different health professions poke and prod her.

I think we all understand how tiring and stressful having a baby with these issues is, whether silent reflux, reflux linked to other health issues or unexplained reflux. I think we could all do with some support.

Some sort of 'survival guide' would be good, with places to look when your baby has just been diagnosed, what to do when the reflux becomes unmanaged, a clear list of available medication to print off and pester your GP with so you are not fobbed off would be useful.

A list of positions to hold your baby when they are having an episode, an explaination of why it happens.

And a big shovel to hit people who say oh they'll grow out of it ....... we KNOW they will but sometimes you just need someone to hold YOUR hand and listen.

We had a very difficult time with DD and weren't sure if it was silent reflux or whether she just was a fussy eater/high needs baby but I remember information being quite difficult to find. No HCP's mentioned it even though DD had very slow weight gain as well. I don't think it was reflux but collected concise information would be very useful (at least a MN guide).

FWIW OP DD still wakes up about 4 times (or more) a night at 14 months.

Another hand up here expressing interest.

Would be interested in discussions of medications and also the effects on the family as a whole and coping strategies etc. brownie1 I'm glad you mentioned the potential PND related issues that can also occur. I am feeling cheated out of the 'newborn' experience and at the moment (I know it's early) I would say reflux is one of the things leading me to say 'never again'. I know things will pass, but this side of it should also be discussed, as I would think can potentially go on beyond when the reflux might be managed or grown out of.

D

A while back I found this

www.pollywogbaby.com/refluxandcolic/LivingwithInfantAcidReflux.pdf

It's not the be all and end all, and I certainly don't agree with everything that it says, but on some days it kept me sane(ish) and helped me to remember that it wasn't all a figment of my deranged brain, and that I didn't just have a difficult, restless or fractious baby!!

That's not to say there isn't scope for a guide - I think it's a great idea, with a special emphasis on maternal wellbeing?

Hi, I'm a new poster...only came on Mumsnet for the first time to see if there was more information on reflux. A good message for HQ as I only signed up to learn more about reflux and how other mums are dealing with it!

My 3rd child has quite severe silent relux and at 9 months we are still trying to find the right balance of medication & diet adjustments (she is dairy/soya free for now)...thankfully we have been able to go private and it has been very helpful to see a paediatric immunologist and get on proper course of trial and error re diet & meds.

When my 1st child was born only 5 years ago I hadn't even heard of reflux. The more I discuss it now, the more it seems like the number of babies with reflux is growing so much in the past few years! I did have a baby with colic (no. 2) and that was quite different in that it was over by 3 months like the baby books say...

I would love if in the forum we could learn about why the sudden increase in the number of babies suffering from reflux? Makes me wonder if it is something in our diets, etc. that is causing this, because perhaps I am wrong, but honestly five years ago I hadn't even heard of reflux...

Many, many thanks for raising this important topic!!

I would wholeheartedly support any form of awareness/support event for reflux. If there is a telephone helpline for baby crying, there should DEFINITELY be one for reflux. It has a huge impact on mum's mental wellbeing, feelings of being able to cope, stress levels, confidence in the onslaught of well-meaning advice from different generations, and most importantly of all, her relationship with this new, screamy, cranky person who seems to need her every minute of the very long 24-hour day. Mum deeply cares for, loves, despairs and has feelings of aversion to her baby all at once.

My dc1 had silent reflux that went undiagnosed for way too long. I think I had PND as a result. I went through HV, GP, referral to surgical ward (old blood in stools), an unnecessary and very upsetting scan for Meckel's diverticulum, referral to gastro - just as we had managed to get things under control. My diet as BF mum was a BIG factor, and I would like awareness of this to be raised at the GP and HV level. I had no ideas as a new mum that:

• severe arching of back during/after feeds was a sign of reflux, rather than just being upset
• crying all day and all night is not 'all babies cry'
• frequent hiccups are often a sign of a refluxy baby
• as another poster put on here, reflux can cause apnoea. Dc1 used to gasp for breath during the night, and as a 1st time mum who has been fobbed off before, I felt like I couldn't 'bother' GPs about it.
• reflux babies can be very difficult to feed, but usually mum's perseverance and bloodymindedness means that weight problems aren't apparent
• dirty nappies can hold the key to identifying food intolerances. I didn't know what a normal BF nappy looked like and for 6 months dc1 had mucousy nappies that disappeared when I gave up gluten. And immediately slept through the night.

With Dc2 I was more savvy of the signs and experimented with my diet more. I hassled the HV and GP more. I got an earlier referral to the gastro. I asked for omeprazole. I knew about this NZ website. I got more sleep. I was a HAPPY mum. However, I was still fighting until she was 12 weeks old because they are so reluctant to medicate tiny babies and want to eliminate all other things first. 12 weeks is a whole lot of weeks to be at the end of your tether.

Please, MN, help those poor mums who are having to go through the self-doubt and agnoy of this awful condition for the first time.

I'm on board too!
banjaxed put it so well, the guilt that you feel when your LO is screaming at you is just hideous.
I diagnosed my DD issue at 4 weeks only because of Mumsnet and the reflux thread. 5 weeks later we are only starting to get somewhere with combination of meds and dosage. If it hadn't been for the thread I think I would have been a candidate for PND.
Action is required and now!

Oh God please do it!
Both my twins have it and we have been to the edge of sanity with it. They're 5 months old and have two totally different drug regimens as one has sole t reflux and suspected cows milk intolerance and the other has "just" classic reflux.
Twin 1 is on:
Neocate
Gaviscon in EVERY feed
Domperidone
Omeprazole fecking tablets
Certirizine
Ketotifen

And my other lovely baby is on:
Enfamil AR
gaviscon in every feed
Domperidone
Ranitidine
Erythromycin (v low dose for 4 weeks)
And they're both on A v restricted diet with no soya, wheat, dairy or egg or milk.
To say it's been, and still is, stressful, is an understatement.

bagofholly, my dc2 is still on that diet at 18mths. If you need any ideas or a sounding board just pm me.

Good idea, it's something which can really ruin the early months/years and makes it so difficult to get out and about. Who wants a pukey baby in their house?

I also think GPs are too quick to take the 'this is your first child isn't it?' attitude and are not aware enough of the condition and possible links to allergy/intollerances.

It took me 6 mnths to get in front of a specialist and even he told me it would all be over before ds turned one (finally stopped just before he turned two).

Regarding a 'relux event'... I don't seem to be getting anywhere with MNHQ. They asked me to start this thread to gauge the response/interest level and I've gone back to them with your comments sme time ago. I've also directed them to the original reflux thread, but still no joy. They're not refusing, just being a little elusive. I'm wondering what else I/we can do? Maybe if we all bombard them with emails? Any other suggestions??