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Reflux event

(50 Posts)
ellnlol Tue 05-Apr-11 10:09:35

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!

gallicgirl Tue 05-Apr-11 11:45:24

I guess it would be helpful to have an expert talk about the signs of reflux so it can be more easily spotted in the first place. There do seem to be a lot of questions on here along the lines of "does my baby have reflux?"

LunaticFringe Tue 05-Apr-11 12:16:09

Message withdrawn at poster's request.

suso Tue 05-Apr-11 12:36:45

Definitely not a crazy idea! When I suspected reflux and took DD to GP, she said that reflux is probably more widespread than previously thought and it had only just started to be recognised as a serious problem. So the more people who are aware of it, the better.

narmada Tue 05-Apr-11 12:38:41

I think it's a great idea ellnlol and thanks for starting the ball rolling .

Reflux is so much more than just a bit of sick. It totally changes the way you parent your child and also has some pretty fundamental effects on other children and also on parents. I don't think it's a coincidence that every one of the mums I know whose babies have reflux have at some point been treated for postnatal depression shock.

Mumbybumby Tue 05-Apr-11 12:44:03

I think it's a great idea too. Especially as the onus seems to be on the parent to diagnose it! Having had two babies with it, if I hadn't researched it myself and suggested it to the doctor it would have been passed off as colic. Signs, treatment and differences with colic as well as some psychological support for the parents would be helpful.

RunningOutOfIdeas Tue 05-Apr-11 12:44:30

I think this is a great idea. Getting the diagnosis does seem to be the most common battle parents of children with reflux have. So wider awareness of the signs of reflux would be good. Also there still seems to be too many GPs who dismiss reflux with "oh they will grow out of it" so it doesn't get adequately treated.

cardamomginger Tue 05-Apr-11 12:54:00

Good idea! How about approaching Great Ormond Street?

gallicgirl Tue 05-Apr-11 13:21:29

Perhaps as well someone could discuss all the methods of treatment and the pros and cons of each.

bethylou Tue 05-Apr-11 22:54:48

It's a great idea, but I am still really keen on your original idea too.

We need to get all medics - GPs, paediatricians and HVs - to have a certain common level of understanding and expertise. The main thread that has been running on reflux shows just how varied the responses people get about refluxy babies are and how hard parents often have to fight to get any support or treatment - all of which is awful, especially when you are dealing with a refluxy baby anyway. Since hearing about a child protection case based around a misdiagnosed refluxy baby and a mum at the end of her tether, I am determined that something must be done in this regard. Mumsnet has the 'power' to help us make it possible, so that parents in the future receive good quality support and information about reflux. Please Mumsnet can we get something done about it?

bbbiscuits Tue 05-Apr-11 23:05:39

Message withdrawn at poster's request.

sh77 Tue 05-Apr-11 23:29:30

Great idea! I have no idea whether my baby has reflux, colic, or is being sick from over feeding. I am not happy giving him different meds (infacol, colief) when I don't really know if he has a problem.

ellnlol Wed 06-Apr-11 16:47:53

Thanks ladies for your replies/support. Isn't it awful that folks get a really hit and miss chance of correct diagnosis, useful treatment plan and decent support? Hopefully a web event will get some useful info out into the mainstream - even if all folks do is direct people to the event notes/commentary.
Thanks Bethylou - I haven't quite abandoned the TV idea, but think a web event stands a better chance of getting off the ground. The TV programme might come later!
Take care all, and keep posting - get your friends to too... I'm not sure how much support is enough but we need to keep this live if MN is going to take it up. wink

cobweb1979 Wed 06-Apr-11 17:03:08

Fantastic idea. I've struggled so much with people telling me it was normal before a GP and the HV took me seriously. I only get 4 hours sleep a night because my husband and I do shifts, and we are exhausted. I fall asleep with him on me pretty much every day, which is scarey and gets me lectures from the grandparents, but what else can I do? He won't sleep for more than 20-30 mins otherwise.

ILoveGregoryHouse Thu 07-Apr-11 13:54:11

Yes, this would be good. Not sure how many mums of reflux babies frequent this particular thread though. Can it go in Chat?

firsttimemum90 Thu 07-Apr-11 14:01:01

yes great idea!

ellnlol Fri 08-Apr-11 19:45:50

Very happy to post elsewhere - just don't know how! I found the original support thread by accident and in desperation, as I guess have many others, and all credit to PosieParker for starting that - what a godsend!
If someone wants to link this across, or explain how, we'll get it sorted!
Take care all and enjoy the sunshine, even if you're holding, nursing or being shouted at... grin

ILoveGregoryHouse Fri 08-Apr-11 22:49:58

Will try and do link in chat tomorrow.

NotAnotherNewNappy Fri 08-Apr-11 22:53:53

Yes great idea.

podmumlet Sat 09-Apr-11 14:05:00

Just chiming in with my support for any sort of reflux event that raises awareness and leads to correct diagnosis and relief for pained babies and worried mums.

Fumblina Sat 09-Apr-11 19:58:27

I'm in...

About time there was a raised profile for this horrible condition.

MacMomo Mon 11-Apr-11 03:46:22

Yes, I need to know how to educate my GP who knows nothing about this subject.

washnomore Mon 11-Apr-11 03:54:59

DD was 5 months old before I was told about the hospital feeding advisor. She phoned the GP and got him to prescribe Zantac and DD hasn't looked back. The 5 months preceding that weren't fun though hmm

Anything to give parents the confidence to press their HCPs for help gets my vote.

HavingAnOffDAy Mon 11-Apr-11 09:04:37

Yes please!

katey13 Mon 11-Apr-11 13:36:13

I think reflux definately needs a higher profile and understanding by everyone. I am a second time mum and when my second daughter was 7 days old reflux caused her body to shut down to stop her swallowing the sick down the wrong hole and choking. We had to call an ambulance as she was hardly breathing. After a day and night in SCBU they diagnosed acid reflux and put her on gaviscon in her bottle and feeding whilst sitting her up, which seems to be working (11 days old now), fingers crossed! It was the scariest moment of my life and cant believe reflux could cause such dramatic problems. I knew nothing about reflux and like many others put the screaming and throwing up down to colic!
I would support anything that would raise its profile.

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