Reflux Help & Support Thread

[stephybump2be]

Luca always had a stuffed nose and sounded very wheezy and bunged up - until he was put on a special formula (neocate) and it went within a couple of weeks!!

Yip, if the trigger is CMPI (cows milk protien intolerance), the inflamation and extra mucous can dissapear quick style. Hope Luca still good

 

[prgirl_cesca]

He's ok, but I think it's flaring up again as he's slowly starting to refuse some bottles again. This morning he would only drink 70ml (12 hours after his last bottle!!) when he usually has 180ml, but i'll see if he catches up over the day with bigger bottles. Most of the time he does and I know it's more of a not hungry enough thing than reflux.

We've got a consultant appointment on Thursday so I need to discuss his medication as I think he's on too low a dose of ranitidine for his weight now.

We're starting to wean him slowly now though so I'm hoping that will make a difference.

 

[stephybump2be]

He's ok, but I think it's flaring up again as he's slowly starting to refuse some bottles again. This morning he would only drink 70ml (12 hours after his last bottle!!) when he usually has 180ml, but i'll see if he catches up over the day with bigger bottles. Most of the time he does and I know it's more of a not hungry enough thing than reflux.

We've got a consultant appointment on Thursday so I need to discuss his medication as I think he's on too low a dose of ranitidine for his weight now.

We're starting to wean him slowly now though so I'm hoping that will make a difference.

fingers crossed honey - do ur homework b4 seeing the consultant so you know what the maximum dose for his weight is. Might be worth asking about a 'step down' approach rather than a 'step up' one: this is when they start him on the maximum dose for his weight to get maximum relief of symptoms, then step it down gradually 'til they find the minimum dose that stiill relieves symptoms.

 

[loopy82]

I have a question for you ladies if you don't mind

My lo was diagnosed with reflux at 3 months and is on ranitidine, think she may have outgrown it now and would like to take her of the meds but not sure how. Am wanting for a response from the consultant but thought I'd see if anyone knew.

 

[happyface82]

I would cut it down if you think she is ok now. The worse that can happen is she is not over it yet and you start the meds again I don't think the doctor can tell you much more really. I'd say trust your instinct!

 

[lilbumpblue]

probably best slowly decreasing the meds but see what the consultant says x

Well James has been weighed today and had gained almost a lb in 2 weeks which is fantastic for him...i was thrilled! ...he then went for his barium meal and id told them to put it in the fridge and then rung this morning to remind them :hehe: anyway he drank it no problem but then screamed the place down...even the people in the waiting room down the corridor commented...but so pleased he drank it as he would have had to have a tube down and as he hasnt been sick for 2 weeks i didnt want it to cause a setback!! Just got to wait for the result now to see if he needs the op or not...xxxxx

 

[booda]

I'll definitely be following this thread, hugs to everyone who's ended up here xxx would write more but LO is about to start a meltdown by the sounds of things..

 

[Farie]

Hi everyone!!
Sorry for being MIA for so long, how are you all getting on?

We are still battling the beast that is reflux, 20mg Losec seems to be our sweet spot, 15mg is ok for a couple of days but then she starts to flare up and chuck solids as well as her milk and then goes off all food
Our chucky periods are less, probably only 1 real puke session a week now Yesterday was her day of the week and she got me a good one - right down my cleavage and into my bra

We still use EleCare shes much better on it than the Neocate, she still drinks a tiny amount (3-4oz per feed, sometimes less) so tales about 16oz daily, plus food.
Shes doing pretty well with her grub, some things make the reflux flare up (citrus mostly or any unintended egg/dairy) but shes good with many things (we are still gluten dairy and egg free) and has a diverse range of tastes - hummus, falafel, satay, spag bol and blueberries are all favs! She eats an avocado a day which Plunket says is great for her weight gain too

Shes now crawling and our paed has high hopes that as soon as shes cruising we'll see a marked improvement in the refluxing and be able to drop her dose down. Although he has said to expect her to be on some medication (hopefully a lower dose) until shes at least 18 months/2yrs

 

[gilz82]

Faire I post on little refluxers as well as here and lots of the parents over there find there is a rebound effect when reducing omeprazole. So generally ok for a couple of days then hellish but apparently the bad days should only last a couple of days before settling down again and it's because the body is starting to produce acid again on the lowered dose.

I don't have any experience of that happening yet as Noah is still on 20mg but there's loads of experienced people over there if you fancy talking through reducing doses with them

 

[aliss]

I'll definitely be following this thread, hugs to everyone who's ended up here xxx would write more but LO is about to start a meltdown by the sounds of things..

I remember when LO was first born, I'd see people on here chatting while I was desperately posting about how to get him to stop screaming, and I think "how the fuck do you have time to chat?? I hate my life!!!!!!!!!!"

Hope your night passed quickly!

 

[aliss]

Shes now crawling and our paed has high hopes that as soon as shes cruising we'll see a marked improvement in the refluxing and be able to drop her dose down. Although he has said to expect her to be on some medication (hopefully a lower dose) until shes at least 18 months/2yrs

I have found that it improved fairly well after mobility and after 13 months, very much so (LO walked at 13 months), we have our flare ups a few times a week but it's really nothing compared to before! 16 months has been much better

 

[KellyC75]

Fingers crossed Farie

 

[TennisGal]

Hi ladies, hope you dont mind me joining you?

Our little Alexandra (Ally) has reflux...infant gaviscon has stopped working, and given her issues pooing (although she goes lots, she has to push!) Was back at the GP today, and we have a referral to take her to see a private paediatrician, who is...apparently...a wonder with all things reflux. GP thinks he will prescribe omeprazole and domperidone.

Questions I have! Are these easy to administer to an exclusively bf baby? How long will it be before we notice a difference? Currently Ally is crying lots and clearly in pain. Sleeping is so hit and miss, and there have been some instances where I / dh start the day at 2am...we do shifts.

I am worried...ally is in pain, I am petrified of falling asleep with ally on my chest in bed, I am concerned Lizzie (our toddler) thinks I am a zombie!

Tell me this gets better with meds???

 

[gilz82]

It should get better with medication but it can take a while.

Domperidone increases gastric motility so it makes the stomach empty faster supposedly minimising the amount left to reflux or vomit. From my conversations with other parents it either helps or it doesn't. For us it didn't. We were told when Noah started it to expect to see an improvement in around one week of taking it.

Omeprazole is a ppi so it basically switches the acid production off. It can take up to three weeks to work properly although many people notice an improvement sooner. If there are any other under lying issues such as cmpi which is pretty common in reflux babies the omeprazole won't work until that is also under control.

Domperidone you just get in solution form so would syringe it into your LOs mouth. Omeprazole you get in dissolvable tablet form usually. It does come in a solution form but gps and consultants are very reluctant to prescribe it as it's £150 for 150ml and can only be kept for 4 weeks. If you get the tablets you have to dissolve in a little water or fruit juice and syringe into your LOs mouth. The important thing to remember about the tablet is that the little granules are the actual medicineand they don't dissolve. Also don't crush the tablets as that destroys the granules.

I really struggle to get Noah to take it but that's because he now has a syringe aversion. Once you are weaning you can just dissolve the tablet and then stick the granules in a spoonful of puree.

 

[TennisGal]

Thanks, that is v helpful. How long did it take for you to notice a difference?

I have really cut down on dairy...was aiming to cut out completely...but it sneaks into so many foods, I inadvertently have eaten it. Stupid me for not checking..,

 

[prgirl_cesca]

So we went to the consultant and he's taken Luca off the ranitidine and put him on omeprazole instead as Luca's feeding has been getting progressively worse over the last 2 weeks.

I'm reading it takes a while to work so should I continue the ranitidine for a couple of weeks? I don't want to have him basically drug free for a couple of weeks!!

 

[gilz82]

Thanks, that is v helpful. How long did it take for you to notice a difference?

I have really cut down on dairy...was aiming to cut out completely...but it sneaks into so many foods, I inadvertently have eaten it. Stupid me for not checking..,

I'm only really starting to see a difference in Noah and he's been on the maximum dose of omeprazole for two months now. That's because his cmpi wasn't diagnosed until four months so there was a lot of inflammation etc to settle.

So we went to the consultant and he's taken Luca off the ranitidine and put him on omeprazole instead as Luca's feeding has been getting progressively worse over the last 2 weeks.

I'm reading it takes a while to work so should I continue the ranitidine for a couple of weeks? I don't want to have him basically drug free for a couple of weeks!!

Noah's original paeditrician (he was crap) said no you can't keep the ranitidine going but now we are under a gastro paed he said you completely can overlap. In fact there are some reflux babies that stay on them both. However he said you'd typically keep the ranitidine going for a fortnight and then stop.

 

[TennisGal]

Thanks, Gilz...and so glad Noah is feeling better. Could I just ask one more question, was the cmpi diagnosed from your diet, or is it from formula? HV seems to think I am being ott stopping drinking milk, cutting out cheese and yoghurt. I've hugely cut down...

Thanks again, we've just had another acid posset and I want to see m girl pain free!

 

[gilz82]

Noah has been FF since birth, I can't BF due to medication. It took until we were referred from a standard paediatrician to a gastro specialist at our children's hospital to get the cmpi diagnosis on top of reflux. He couldn't believe that the existing paediatrician hadn't picked it up.

You aren't being OTT at all trying an exclusion diet. Best case it helps your LO, worst case you don't eat dairy for a few weeks. Nothing lost really

We are currently waiting on the results of biopsies from Noah's endoscopy last week as they think he has multiple food intolerances so fingers crossed once we know what's going on there we'll start to make proper progress

 

[TennisGal]

Fingers crossed for you...sounds like you are due some much needed answers

My HV seems to think my bones will crumble unless I am downing pint of milk *rolls eyes*...it gives me stomach ache, so I've never drunk it! I am just adding a few other bits, but she won't listen! Can't wait for my lovely HV to get back from holiday.

Everything crossed for you all and Noah