Reflux Help & Support Thread

[gilz82]

Thanks hon, I hope once you see the paediatrician Ally settles really quickly. It's completely crappy watching them suffer.

 

[TennisGal]

That's exactly it-I had to go and cry last night, her little face just crumpled in pain. I can't bear it.

Have now got to ensure she doesn't always want to sleep on my or DH chest...we are so tired, just worries me so much. Bouncy chair is our friend!

 

[aileymouse]

Hi, I hope you don't mind me posting here but having some troubles. I've posted on varous forums and don't get a very good response. I'll just copy and paste from my other posts and hopefully it'll have all the in fo there:

My LO is EBF. She's always been a 'grumpy' baby.

She is also very sicky. At first they weren't concerned as she was still gaining weight. But now she has started losing it. This week she has lost 3oz. People keep saying, it's not much, but she's not supossed to lose any.

She's been diagnosed with reflux. She was given gaviscon and I couldn't get it in her. Then we've been given domperidone which I think makes her worse if anything.

The lady who does baby massage mentioned testing for intolerances. But the doctor says oh it's rare, but what if my LO is the 1in whatever it is that has an intolerance??

We've been refered to a paediatrician but the waiting list is huge, and I can't wait for two months with my LO losing 3oz every week!
I just don't know what to do anymore. I could cry, I hate seeing my baby in so much distress
I feel like going to hospital and not leaving until I have answers.

I saw the doctor today and she has spoke to the paed and they don't have an appointment until november, so in the mean time they have said to give ranitidine and see how it goes, also to keep trying the gaviscon too.

She is sending the breastfeeding counsellor round to see if she can suggest different positions

She also said that the paed may suggest formula feeding I will do it if it is best for her. but feel a bit gutted about it.
The doctor did mention an intolerance to cows milk protien but she said that is something the the paed will test for but she said not to cut out anything yet as it is rather drastic and it may not even be the problem!

So next week on monday I will see a breastfeeding counsellor, weds the HV for weight and thurs back to the doctor again! I've also got to get her jabs done too...Nightmare!

(I hope you get the jist of what's been happening, and thanks for reading x )

 

[prgirl_cesca]

Hi aileymouse, sorry to hear about your baby.

How long has she been on the ranitidine? It's a really good med to have, especially compared to Gaviscon. So keep up with that.

In terms of the intolerance, I was told that they don't test for intolerances until a child is one but I have read online about some babies being tested earlier but I think that's only for really really severe cases.

My son was put on special formula (neocate) for a suspected cow's milk protein intolerance - they can't for sure confirm it is that but his symptoms went away dramatically after being on this formula and once he's fully weaned they'll try and give him a difference formula, then soy milk after 1 year, then introduce small amounts of dairy until he hopefully grows out of it. His symptoms were very bad excema, congestion, mucus, blood/stringy mucus in poo and poor breathing. He also has laryngomalacia (floppy windpipe). I actually think the main reason they gave this formula was his terrible breathing (his chest would go completely concave) and I must be in the right postcode as i've read on here and other forums it taking months and months to be prescribed it.

So what i'm saying is don't give up breastfeeding and think formula is your answer just yet. The main thing you can do is cut out (or at least reduce) your dairy consumption. Also go with the normal reflux soothers - burp frequently during feeding, try and keep upright after feeding for a while, elavate cot/pram etc etc.

I know what you say about going to the hospital though....we got sent by the GP to the hospital because his breathing was so poor and it was the hospital that prescribed his special formula and ranitidine. And now we have a direct gateway to the consultants because we've been on a couple of overnighters in the ward. Although I had my consultant appointment today and it was booked way back in JUNE! Most people i've read about on here having problems with getting the right drugs were going through their GPs.

Take her to A&E if she is really really bad, but just be prepared they have to offer the lower ends of the medications first. So gaviscon, then ranitidine, then domperidone, then omeprazole and so forth....because for some if not most reflux babies the first rung of medication (gaviscon) works like a dream.

Good luck, oh and keep holding your baby upright a lot generally so she gets good head control and do tummy time often so she learns to control her head/neck and gets stronger. Luca has been able to sit upright with little support for well over a month now (he's 5 months old) and it has been really good in bringing up his wind and making him more comfortable.

ETA: Delay the jabs if you want to. Luca ended up being able 4 weeks behind on his jabs and it's done him no harm xx

 

[TennisGal]

Ladies-another newbie to reflux question...did you find you had to completely cut dairy out for any difference to be made? Or is significantly reducing ok? I have cut out...milk, cream, yoghurt, cheese, ice cream, butter...but I keep forgetting things that are made with milk/butter/cheese I.e. Pesto, fruit buns, some cereals...

I am so silly, I keep forgetting, as I tend to eat so quickly to get things done!

 

[gilz82]

I don't have experience from a BF point of view of cutting dairy out but when Noah was put on neocate we were told it could take up six weeks for all the dairy protiens to leave his system and that was him completely dairy free (he's not weaned yet)

If you reduce as much as you can without checking every single label for milk or milk products and you get an improvement you could then be stricter about cutting it all out.

 

[aileymouse]

Thank you for your reply, we were only given the ranitidine today after trying domperidone for a few weeks with no effect.

We do all the propping up/winding etc.

The gp doesn't seem overly concerned as she looks well and is hydrated...but why does she keep losing weight?? she started on the 50th centile and is nearly down to the 2nd

eta: she has very good head control. She loves tummy time and will sit upright on my lap and you can feel the strength in her back.

 

[lilbumpblue]

aileymouse i know its really worrying when they lord weight but once your consultant sees lo that will all be monitored closely. James has been losing and gaining since February and they have only just started to listen to my concerns and he had a barium meal yesterday to see how bad the reflux is so just awaiting the results x

 

[aileymouse]

I just feel terrible that she is 3 months old and she has been in pain all her life and they are only just taking me seriously

Being told that it could a few months yet before we see the paediatrician.

thank you so much for you replies

 

[TennisGal]

it's so awful seeing them in pain...fingers crossed we all get this sorted as soon as we can

 

[KellyC75]

I totally sympathise with all you new ladies ~ Reflux is a terrible thing that our babies dont deserve to suffer with

My Daughter started getting better at about 8 months, sitting up & solids have helped, she is now off all medication & on 'normal' milk for her age

My best tips are:

Dr Browns bottles
Selecting the correct milk , for my LO it was Aptamil comfort (thicker, so stayed down better)
Bed blocks under her cot, to raise it at night
Feeding her bottles in her bouncy chair, she hated laying back in my arms
Getting a medication that suits your LO ~ For my LO it was Ranintidine then lansoprazole

 

[kittycat18]

My LO Lucia has reflux and at 6 weeks she went into Hospital with it because she was chocking on her vomit and going purple She actually lost 2lbs of her birth weight. I was breastfeeding and they helped me introduce a bottle so she could put the weight on and we tried Gaviscon but it didn't work. She now gets Carobel in all her bottles and I stopped breastfeeding with the stress of it. x

 

[amand_a]

I'm so sorry others are suffering

On a positive note tho, I think I may have found what works for us (for now)
We have now had 2 nights of 8hr sleeps now I just need to figure out what did it, as i started a couple of new things. One I am trialing him on soy formula, which is horrid stuff but he seems to drink it ok. also found him a new swaddle beg thing called a woombie that they cant get out of.

We are not fixed entirely tho, he is still very raspy and mucusy. I am noticing bits of mucus in his spit up now. Not sure if that is because he is starting to clear it or its getting worse.

 

[amand_a]

Great 3 days on soy and we are gassy and constipated, I really cant win!

 

[prgirl_cesca]

I don't think you can give soy milk before one year, that's what my consultant told me.

Swaddling is a godsend though, that's all that got Luca to sleep in the early days.

 

[gilz82]

In the uk they don't give soy and especially not to baby boys, but I'm sure it's used in the states so maybe it's used in australia too.

 

[aliss]

In the uk they don't give soy and especially not to baby boys, but I'm sure it's used in the states so maybe it's used in australia too.

Yes it's quite common in North America. Mine was on it for 8 months, we were desperate. It hurt his tummy badly but it was the only thing that he kept down

Does anyone know the rates of reflux reoccurance? I'm really terrified. While I am happy for my BFP I am scared of another reflux baby. We still have episodes on occasion at 16 months

 

[KellyC75]

Does anyone know the rates of reflux reoccurance? I'm really terrified. While I am happy for my BFP I am scared of another reflux baby. We still have episodes on occasion at 16 months

I wish I knew this too! My 1st 2 Sons (thankfully) didnt suffer, but my last baby, a Girl did...This ones a Girl too & im so scared

My LO Lucia has reflux and at 6 weeks she went into Hospital with it because she was chocking on her vomit and going purple She actually lost 2lbs of her birth weight. I was breastfeeding and they helped me introduce a bottle so she could put the weight on and we tried Gaviscon but it didn't work. She now gets Carobel in all her bottles and I stopped breastfeeding with the stress of it. x

Oh my gosh, I am so so sorry for what you & your LO went through, that must have been terrifying

 

[gilz82]

Strange you mentioned that Aliss. I'd really love another baby at some point but OH is really not keen given how ill I was and Noah being premature and the reflux.

I asked our gastro paed a few weeks ago and he said that as far as he's aware there is no genetic link so further babies wouldn't necessarily be affect. Unfortunately have come across a lot of parents on other forums with multiple children all refluxers of varying degrees.

Maybe another way to look at it is.. Even if your next baby is also a refluxer you'll recognise it from the start, won't be fibbed off with any crap about it being colic and get straight to which ever meds or milk combination will work from the start

 

[happyface82]

I agree with this gilz. If I only knew what I know now when all this started.

We have stopped giving Katerina ranitidine and she seems fine so far. It's been almost a week. Hopefully it will stay this way!