Things a paediatrician says that you wouldn't expect? (Long)

(88 Posts)
purrpurr Sat 07-Sep-13 21:27:19

We're parents to a 4 month old baby with severe reflux, have been round the houses with the Healrh Visitor and GP and finally took our baby to A&E today after she'd pretty much stopped taking her milk altogether, was producing very concentrated dark yellow urine suggesting heading towards dehydration, screaming when attempting to feed etc.

Triage nurse and A&E Dr were understanding and sympathetic, witnessed her arching her back and screaming red faced when laid on her back, suggested to us it looked like severe reflux and passed us to children's assessment ward.

There a different nurse asked for background again, then became obsessed with the fact that, after 3 months of bad reflux and slow weight gain on one formula milk, on the advice of our HV, we changed her milk (made her projectile vomit) changed it again due to vomiting (worked for one week then back to normal), nurse abruptly stated, "Well of course you'll have problems if you're changing her milk all the time". She then fed her version of what we'd told her to the paediatrician.

Surprise surprise, she had no sympathy for us, didn't listen to anything we tried to say, and came out with the following gems:

- When our baby is screaming in distress when laid down (the screaming is instant), it is because she is bored.
- All babies cry, you know.
- Let your baby lead you, don't focus on the amounts she is drinking. After all, if you were breast feeding, you wouldn't know how much she was eating would you?

This admittedly really got to me, I was speechless, I think if I'd not been frazzled I would have said the following:

My baby is eating A FUCKING THIRD of what she should be eating, if I were breast feeding surely my breasts would feel full/achy because she would be latching on, taking a tiny mouthful and screaming and screaming. If this went on long term I would guess my supply would be dwindling. Potentially even dried up. Don't throw that emotive crap at me. It might be a valid point if we weren't dealing with a BIG FUCKING DEAL here.

Phew.

- All formula milks are the same, including Comfort and Stay down and anti reflux and organic and everything else, they are all the same.
- ... But changing the milk all the time, as you have been doing, is causing problems. You need to pick a milk and stick to it.

O rly? Insert all the sarcastic emoticons the Internet has right here.

- How much does she weigh? Well she's alright then.

?

- You can't tell if a person is dehydrated by looking at their urine.

Really? I mean really? So urine tells us nothing? I am finding this one hard to take on board.

- There is nothing wrong here. It might be 1pm and your baby may well have only had 3oz but that is fine, what is the problem? Here's some medicine that might make a difference within a month. Bye.

Can't complain massively because we got the right medication and hopefully we are on the road to having a baby that is not screaming in agony and unable to eat. She is asleep on my lap and I can feel her tummy rumbling and I know that when we try to feed her she will scream and struggle and it is heartbreaking. Here's hoping this fixes it.

Have you had an unexpected experience like this? Did you feel like a time waster but still wanted to battle for your baby?

purrpurr Sat 07-Sep-13 21:32:00

God, there is so much in my post that could get me flamed. Please don't flame me sad

purrpurr Sat 07-Sep-13 21:44:51

Oh fuckadoodle doo, I've killed my own thread.

Won't somebody read my incredibly long and potentially horrendously unreasonable post and give me sympathy?

sad

DameFanny Sat 07-Sep-13 21:48:25

Sympathy from me! Sounds like an awful experience - how the medication works.

sharond101 Sat 07-Sep-13 21:51:15

Been there and heard similar but believe in yourself, you are the Mother and you know your baby best thus you know when things are not right. Push and push and push to get her seen and treated. I pestered my HV for months about my son's breathing. Apparently it was normal for a baby to be loud in his sleep and when feeding. Not so when I visited my Dr when he had unbearable colic. She phoned an ambulance she was so concerned about the noises he was making. Now he is under a specialist paediatrician and his care is second to none.

As for the refux it's tough. DS has reflux too, linked with the breathing problems. Gaviscon has helped for him as has weaning, food seems much easier than milk.

Persevere and trust your instincts.

theduchesse Sat 07-Sep-13 21:53:04

That does sounds horrible and pretty bizarre advice. Of course urine goes darker with dehydration. And I really don't buy the 'I'm bored' explanation for the crying on her back and clearly they can't have it both ways on the formula front. I've never had a refluxy baby and have no medical knowledge so no helpful advice but just wanted to say that sounds awful and I think you did the right thing pushing for help for your daughter. I hope the medication you have helps.

THe colour of her urine is suggestive not diagnostic but I don't think she should have dismissed that and yes I don't think they did really listen to you - because they got hooked on the idea that here were new parents (and therefore assumed to be clueless parents) with a baby who cries. Which yes they all do but not like you're describing. So you are right to feel upset and angry BUT the bottom line is you got some stuff which will hopfully start to help.

marzipananimal Sat 07-Sep-13 21:53:13

Oh you have my sympathy, it sounds awful! So sorry the doctor was crap. Have you asked on mumsnet for advice on reflux? I know early weaning is sometimes advised (and as she's 4 months it wouldn't be especially early anyway) but I'm no expert

onlysettleforbutterflies Sat 07-Sep-13 21:53:34

I have a refluxer too so you have my deepest sympathies. I have found a few great understanding medical practitioners and unfortunately lots that don't seem to understand at all. Keep going, get a referral from your gp to a specialist pead and don't be afraid to ask for 2nd opinions.

froken Sat 07-Sep-13 21:54:55

Oh you poor things sad I really hope the medication works quickly.

I was in a+e with ds when he was 5 weeks old. He had turned blue and wasn't breathing well ( he had reacted badly to rs virus) I told the Dr he looked pale, tge Dr said to me "ofcourse he is pale, you are British, he will be a pale baby" I ment he looked paler than usual, we don't live in the UK.

JedwardScissorhands Sat 07-Sep-13 21:56:55

Have you considered cow's milk protein intolerance? I was similarly fobbed off, tried excluding all cow's milk (for me as I was BFing) at my own behest and expense... and after around 20 days a magical anri-vomit switch was flicked. Could be worth trying a hypoallergenic formula such as neocate. Quite expensive, but you need only buy it for a few weeks and if it works it's available on prescription.

inneedofrain Sat 07-Sep-13 21:57:05

Ok let's deal with one thing at the time

If baby is sleeping in a cot or similar prop the head up on a slight angle use anything you can couple of books video cases

Keep baby up right as much as possible after feeds, up over your shoulder, propped on your chest etc

Next now this there is no more powerful instinct than mothers! You know you are right and your dd needs help, yes you had to put with stupid comments today, but you are doing the right thing! You will get there

inneedofrain Sat 07-Sep-13 21:59:03

Sorry nb I mean prop the head end of the cot up not the head of the baby!

If you need to, ask for a second opinion. If you can afford it then consider seeing someone privately to ensure you get a decent length consultation with someone who is recommended and hasn't been fed a load of information secondhand by a nurse.

deakymom Sat 07-Sep-13 22:21:00

totally sympathise with you ive had three children with reflux baby one was never diagnosed baby two was diagnosed by my friend and dismissed by doctor after doctor finally after five months he got gaviscon he was so much better baby three i went in and demanded the gaviscon he is now on lactose free milk too im still angry that the first few months of all my babies lives have been disrupted by me being a fussy parent (no doctor my baby is ill really? you have an MD after your name do you? no but a have a fist at the end of my arm if that helps?) my babies tended to sleep on my shoulders for the first few months of there lives as they are propped up i persistently smell of milky spit up i love my kids grin

by the way next time dont confess to changing milks they blame that for everything my doctor was prescribing bottle after bottle of stuff to cure the constipation until a girl i knew told me sma gold is prone to making babies constipated i changed it he was fine i asked the HV if she knew this she said yes but they were not allowed to give feeding advice to bottle feeding moms only breastfed moms i pointed out common sense should tell her that if a baby is suffering she should be able to give advice she said it was more than her job is worth............i changed health visitors

purrpurr Sat 07-Sep-13 22:26:12

Thank you for all the replies.

Have just had to change DD's nappy and she screamed herself hoarse. Both me and my DH were fighting back tears.

Tried to feed her and she had 1ml, screamed, hungrily got on bottle again, screamed. Managed to get her medication in - ranitidine and something else - and she is now back asleep. She is 4 months old and 5.8 kg and has had 330ml today.

Worried sick.

thinkofthemoney Sat 07-Sep-13 22:29:15

I was told that my baby who had stopped breathing at home was 'completely well' and that I was anxious and not coping. A nurse phoned my health visitor to tell her I was basically making things up about my baby. I was offered a referral to a psychiatrist.
My baby turned out to be septic and seriously ill.
I can quite believe your story and you have my sympathies OP.

purrpurr Sat 07-Sep-13 22:31:30

Inneedofrain she lives on our shoulders and all her beds (one upstairs one down) have mattresses that are raised at the head end with DVDs. I have a permanent necklace of milk spit up.

I agree with jedward

I would beg to try a hypoallergenic formula such as aptamil pepti. Get on your knees if you have to sad

Sounds awful and scary and they should be helping you more sad

purrpurr Sat 07-Sep-13 22:34:22

Thinkofthemoney me and my DH are absolutely horrified at your story, that's terrible. I hope your baby made a full recovery.

monstergoose Sat 07-Sep-13 22:35:53

Hi, I hope you are ok tonight. I know how stressful it can be dealing with a screaming unhappy baby, I remember going back to the GP for the third time and just bursting into tears with how horrible it was seeing my baby in so much discomfort after every feed sad

I would definitely second the pp that said consider a private paed referral, we have bupa and dd is covered for free until she's a year but the consult with the paed was £200 so we could have managed that without bupa if we had to. We ring bupa and asked for a paediatric gastroenterologist rather than just a paed and ended up with a fab dr (pm me if you want details). To be honest the information he gave us wasn't groundbreaking (most likely dairy and soy intolerant so to cut those out of my diet as I was BFing) but we were already on meds. But it was the feeling that someone, finally, was listening to us and taking me seriously, not fobbing me off with an nhs referral in 3 months time (seriously, for a baby that hadn't even been alive that long hmm .

With the meds you really need to be on ranitidine or omeprazole (these reduce the acid in the stomach) rather than gaviscon which doesn't do much unless the reflux is only mild) so if you feel things aren't improving then definitely push for something else.

Cows milk protein intolerance is a very common cause of reflux, especially if your baby has ever had mucusy green poos ( ours had hence the diagnosis) and we also cut soy out as the protein is very similar and babies often react to both. I cut them out of my diet as an BFing but have also got a prescription for aptimil pepti which as hypoallergenic formula for when she deigns to take a bottle and although it smells like cheesy feet she takes it ok so I'm sure a baby that's already used to a bottle would be ok with it.

I would definitely say if things aren't improving don't be afraid to push to see a specialist, you are your baby's only advocate. I still kick myself for the time i spent believing the HV who told me all babies vomit and it was normal for them to cry lots hmm ( yeah but not an entire muslins worth of vomit at every feed and cry after every feed rather than fall asleep like all my friends babies!). I wish I'd seen the paed sooner as she was a different baby after a few weeks into the diet change, it makes me sad to think how uncomfortable she was before.

Good luck getting things sorting, I hope you LO settles down soon

inneedofrain Sat 07-Sep-13 22:36:03

Look I'm going to get shouted at! But I'm going to say this anyway

My ds had terrible reflux the doctors over here tried everything and nothing helped! I was in the park one day ds was in tears and so was I! A lovely old lady wondered up and gave me hug and told me she had a dc that was the same with reflux, she was very old, she told me try a small amount of camomile tea cooled, now I dismiss this advice but a few days later in absolute desperation I tried it and it did help. I was breast feeding though, I don't know if that made a difference.

Try keeping her upright as much as possible, is there anyway she could have a uti or similar?

If you are really worried go back to a and e, she's only a baby the doctors won't mind. Keep pushing if you have to!

Hugs from me

purrpurr Sat 07-Sep-13 22:37:07

Jedward and wheresmycaffeinedrip that will be our next thing to look at, but have been prescribed ranitidine and domperidone today to try for one month. From our limited knowledge these are the things that are mentioned all over Internet forums as the medicines that fix this, but god knows.

If she's sleepier than normal take her back to hospital now. Is her fontanelle ok?

I didn't bottlefeed so don't know but doesn't sound like she's drunk enough. What would you expect her to drink?

In all honesty I wouldn't wait a month. She's so young and taking so little I'm shocked that they aren't taking hydration seriously. sad

purrpurr Sat 07-Sep-13 22:44:21

What is fontanelle? Soft spot? If so yes it is fine, normal.

Before she got really bad this week she would have 850ml a day - this was when she was on a formula that briefly really suited her. Before we changed her milk we could feed her 650ml a day, that was when she was 3 months old, she is now 4 months old.

She has been sleepy all day, slept on us the 5 hours we were in the quiet children's A&E. Wasn't seen as a problem.

Keep second guessing myself.
Maybe they were right to be so nonchalant, so dismissive.

How can this be right? You wouldn't do this to a grown up, as in expect them to be fine with finding eating absolute agony and dropping from 3 meals a day to 1, why is it okay for the most vulnerable? Would we do this to the elderly?

purrpurr Sat 07-Sep-13 22:47:27

Wheresmycaffeinedrip, we feel like we won't be taken seriously unless she is really ill, but we refuse to wait for that to happen, that is NOT what being a parent is about.

Is there any way you can see someone else. Get a second opinion. Or a different a&e? It just sounds so awful sad

PeacockPlumage Sat 07-Sep-13 22:49:46

Don't be afraid to go back to a&e tonight if your insticts are telling you to.

sewingandcakes Sat 07-Sep-13 22:53:22

Could she have some cooled boiled water, to get her rehydrated? Sounds like an awful situation, your poor baby (and you). Keep pushing for her: you are her advocate and know her better than anyone.

What are her eyes like. Someone posted a few months back about something called allergic shiners. Does she have dark circles around her eyes? Almost like she's got black eyes?

MrsSpencerReid Sat 07-Sep-13 22:55:37

Not helpful right now but I have an unopened tub of aptamil pepti which you are welcome to if you're anywhere where I can get it to you!! Pm me if you want it, really hope you all feel better soon

inneedofrain Sat 07-Sep-13 22:56:30

Purr go back to a and e, everything you say sounds worrying, this can not wait a month! Go back to a and e! Your worried, your baby is not drinking enough and is screaming in pain, just go back to the doctors, it sounds like reflux but there are other concerns eh dehydrating and they need to be taken seriously

purrpurr Sat 07-Sep-13 22:58:58

Sewing we've tried water but she just screams as soon as it 'lands" if you see what I mean. We have read about ranitidine working in as little as 24 hours so we really have everything crossed. If we see no improvement and there are signs that she is becoming drowsy / unresponsive we will take her back ASAP.

At the end of the day we're not going to A&E to make friends...

So thankful for all the support on here, I feel galvanised, that we are doing right by our daughter.

purrpurr Sat 07-Sep-13 23:01:28

Wheresmycaffeinedrip her eyes are ok, they look more tired but no discolouration.
Inneadofrain we will definitely take her back ASAP if she worsens, I feel much stronger having read replies on this thread thanks

purrpurr Sat 07-Sep-13 23:02:58

MrsSpencerReid many thanks for the kind offer, if we have to go down that route I would really like to take you up on that, hopefully the ranitidine will work.

notanyanymore Sat 07-Sep-13 23:05:51

I don't have any experience with reflux babies myself but my friend has been going through this recently and the things that helped them best were Neocate milk, keeping baby upright during/after feeds, and weening. AND persistance!! (She's not a lady to say no to at the best of times!) She did eventually manage to get baby under the care of a consultant. Also, even now she's weened she can't have any dairy, but apparently she should be fine with that past 1 yrs. I also want to second others advice, any concerns head straight back to a&e, as I said my friends persistence really paid off.

Ok so see how you go but if you can't get much in to her overnight then you need to go back. Going by what you say she isn't drinking enough. Give the docs those figures. Fontanelle is soft spot yes and it sinking in can be a sign that all is not right. Good that hers is ok atm. Hang in there OP - are YOU eating and drinking btw? You need to keep your strength up.

SurvivalOfTheUnfittest Sat 07-Sep-13 23:14:08

Just wanted to add my best wishes to you. Both dc have reflux (and are unlucky not to have outgrown it). Both now gluten, dairy and soya free. Anyway, I remember days of desperately trying to get fluids into a screaming ds1 whilst I cried too. Keep fighting the medics (and be aware that ranitidine might not suit your dc - it worked for ds1 but not at all for ds2). Be assured that one way or another you will all get through this. At 3 and 5, my dc are active, bonkers boys and that hideous time is slowly fading.

purrpurr Sat 07-Sep-13 23:14:37

God northern you're going to make me cry. Everyone's been so lovely on this thread, we are at the end of our tether. I'm frightened to go to bed in case she gets a lot worse when I'm asleep but all her obs today were perfect, heart rate normal, soft spot normal, blood oxygen level normal, still shiny eyed, no visible sign of dehydration. So even if she is heading down that path she would be ok overnight?

Reading that back have I made this out to be much worse than it iis? She looks ok but does that mean then that she is a miracle baby that can eat less than half of what she needs and not suffer? So hard to trust myself but yes she looks ok now, not bright eyed and bushy tailed but not listless either, but I couldn't hold off until she visibly looked poorly.

purrpurr Sat 07-Sep-13 23:17:24

Survival, that is the stuff of nightmares. We can't let ourselves think that ranitidine won't work. What did you do when it didn't work? Just keep soldiering on and crying and worrying until weaning? And you say it continued? My heart goes out to you, you must be due a proper major holiday somewhere exotic.

I will keep my fingers and toes crossed purr that you will awaken to a happier dd who's meds have started to kick in.

But always remember, she's your baby. You know her inside out, do not be afraid to speak up if medics refuse to listen. X

It sounds like she's physically managing ok but she's clearly not 'right' and therefore neither are you. I don't think you should feel you can't sleep though. Get some sleep if you can and see what tomorrow brings.
It's this week that's really been the problem isn't it? She hasn't got a cold - or teeth coming? Anything really that could be making an existing discomfort worst?
Don't be crying because people are nice to you btw grin Next thing you know you'll be calling us hun.......

Message withdrawn at poster's request.

Neverending2012 Sat 07-Sep-13 23:42:14

Don't let the medics fob you off. You know your baby. Do what you have to do. They can be soo patronising... I have a ds with silent reflux, he's now 8 months, first in hospital at 6 weeks with it, sent home with ranitidine and domperidone , then couldn't get him to eat and they were all to keen to admit him to hospital at 10 weeks with failure to thrive after id taken him to a&e repeatedly trying to get someone to listen. Sat in the doctor's surgery until they were sick of me... We ended up having to feed him through a tube in his nose.. He's on neonate as he's cow's milk protein intolerant. The doctors also kept questioning why he wasn't smiling.. Who would if you were in constant pain... Also turns out he's really long sighted and couldn't see clearly, they insisted there was more to it and gave him a brain scan.. Weaning helps, but reflux is horrible. Ask for omaprazole and if they tell you to start dissolving tablets tell them you can get it in liquid form, it's just expensive so they tell you it doesn't exist. The thing is they just throw drugs at it and tell you to go away. There's nothing like reflux, everyday I wish it would go away.

Neverending2012 Sat 07-Sep-13 23:43:31

I think I took ds to a&e 7 times before the age of 6 months....

MsPickle Sat 07-Sep-13 23:55:16

Sounds rotten. Dd has severe reflux, starting to ease as we head towards 10 months. Ds also had reflux. We've had good consultant care but it's so hit and miss, we think partly it's been good as our main guy had a daughter with reflux so has lived it and understands that it's not a normal amount of crying! (Dd sounds like a car alarm when she's full tilt!).

If you end up with omeprazole I second fighting for the oral suspension but you'll have to fight hard, at £150 per 75mls vs £7 for months worth of the tablets you're up against quite a difference. We've also only just learnt that it can be flavoured, the banana has made such a difference!

Gripe water helped soothe dd at a similar age, I think it probably just eased her throat for a moment.

The other thing that helped sometimes was taking her nappy off, any additional pressure on her stomach needed to be eased.

Sleeping on her front helped too. We have the AngelCare monitor. Others have already given the upright/angled advice.

How do you hold her when feeding? Can you vary that? And, probably controversial, but have you tried putting the tv on for her to watch to try and distract her a bit to take some more?

Hang in there and keep fighting. A friend of mine says that's our job as parents, no one else will fight as hard as us.

Neverending2012 Sun 08-Sep-13 00:04:00

Yes white noise as distraction can really help. Sounds silly maybe but the whole thing is traumatising.. And sad.

peachesandpickles Sun 08-Sep-13 00:06:07

Has anyone mentioned pyloric stenosis to you? My friends baby had the same symptoms as your dd and she was repeatedly told it was reflux.

She is a nurse and wasn't convinced and pushed for a scan and it turned out to be pyloric stenosis. He had to have surgery but made a good recovery and was like a different baby.

Neverending2012 Sun 08-Sep-13 00:11:13

Everything is worth considering until ruled out for sure but I have a feeling pyloric stenosis most likely affects boys - could be completely wrong though

IdaClair Sun 08-Sep-13 00:12:21

I wasn't taken seriously with DD2's reflux until I produced DD1 as proof of previous parenting, so I understand. DD2 was still under her birth weight at 10 weeks old and skinny as a rake before we got anywhere. A persistent breast refuser, she went more than 48 hours without liquid several times in her first few months. Many times we were reduced to feeding her expressed milk drop by drop via syringe and getting 5ml in was a victory.

She ended up on gavison, ranitidine, then omeprazole and domperidone, 6 times a day, and the slightest adjustment in weight/meds ratio had her screaming for ten hour stretches without stopping...

I would ask about domperidone for her if you can, get a sling if you don't have one already and take shifts. One of us would do the early shift 8pm-2am whilst the other slept and the other would do 2am-8am approximately. Of course I would still need to wake to feed her during my sleep but it's amazing the difference knowing you're not 'on duty' makes. Takes you off your tenterhooks for a while.

I thought pyloric stenosis made itself apparent earlier - OP's baby is 4 months now. Could be worth mentioning though.

peachesandpickles Sun 08-Sep-13 00:18:20

neverending You are right in thinking it is much more common in boys but can affect girls too.

Neverending2012 Sun 08-Sep-13 00:20:18

I think you are right northernlurker about it being earlier

Neverending2012 Sun 08-Sep-13 00:22:40

Fwiw it's so good to hear others have battled with the horrors of reflux, it's very isolating.

purrpurr Sun 08-Sep-13 07:12:30

Thanks for all replies, totally shattered after a long night of napping between DD crying in misery, will reply individually in a bit after coffee has been sought.

My DH managed to get her to have 130ml over 1.5hrs last night starting at 1.30am, most of it went in in two lots of 60ml. Then at 6am she had 120ml all in one go, with no crying, at all. There was a whimper as she went from upright to feeding position but then she fed, was winded and went to sleep on my chest.

No idea what today will bring, my parents are going to look after her for a few hours so we can get some more sleep. Feel a lot better that she's had 250ml overnight.

Tee2072 Sun 08-Sep-13 08:15:39

Oh good, that sounds like the medicine might be working, purr. Glad you're getting a break today and some sleep.

If she doesn't start taking more, go straight back to A&E and remember the feeling you had writing your OP and use it!

inneedofrain Sun 08-Sep-13 08:18:13

Hi op

Great news that you all managed some feeds overnight

Fingers crossed for you all for today

HPsauceonbaconbuttiesmmm Sun 08-Sep-13 09:31:20

Sorry you had such a poor response from the hospital. Just to say it's almost certain you saw a junior doctor and not a consultant. If you get similar treatment again ask to speak to the consultant in charge and if no luck there demand a PALS rep comes to see you as you're not happy with the care you've been given. I guarantee attitude will change immediately.

Ds was a refluxer but not that bad. You have my sympathy. Not long til weaning. Would you consider starting early? Supposedly helps a lot.

purrpurr Mon 09-Sep-13 14:00:53

Well things aren't any better but they aren't massively worse either.

My mum and dad had DD yesterday and got her to eat three full bottles from 11am to 6pm. We were gobsmacked. When we watched her feed DD she just pushes past the screaming and keeps the bottle teat in DD's mouth, it looked horrendous but worked really quickly, I was equal parts horrified and surprised. So I tried it when we got home. She took 10ml that I basically force fed her before throwing it back up. I felt disgusted with myself and confused.

Upon questioning my mum further she had been secretly adding baby rice to DD's bottles which as I saw, seemed to help her take them.

My DH is against weaning before 6 months. I was until it got this bad, if I was a single parent I would have started weaning this weekend even though its basically a massive Don't Do It Or Your Child Will Die type scenario. I am against baby rice though as from what I've read the nutritional value is about on the same level as cardboard, could be wrong though. My mum knew the collected view on weaning (public united front of No Weaning Before 6 months) and especially knew my opinion on baby rice, so feel shocked and almost betrayed there.

But on the other hand, she got my DD to eat normally, at times she normally would have eaten at.

Mum was also keen to tell me that my DD is absolutely fine and there's nothing to worry about, as if I'm a total head case idiot. Hey if that's the case then why the clandestine baby rice, hey?

Today I've hit rock bottom. DD has had 120ml so far and has cried so hard and for so long she is hoarse. We're off to the in laws tonight for a cuppa and they're of the same opinion as my mum, that there's no problem. It's enough to make you think you're nuts.

lougle Mon 09-Sep-13 14:27:40

DD1 had reflux and we weren't helped at all. When DD2 came with the same symptoms I wouldn't take no for an answer. I took her to the GP and asked for a hospital referral.

She had ranitidine orally, plus carobel just before a breast feed. Carobel is a natural thickener. I used to express 5 ml of breast milk, mix some carobel powder with it and feed it to her from a spoon. She was able to take it like this from 8 weeks old. Then, breast feed as normal. It really made a world of difference. Available for 3.99 for a 135g box, but I got mine on prescription.

prissyenglisharriviste Mon 09-Sep-13 14:44:00

Don't stress about the baby rice - it's actually a really helpful indication that she finds dealing with 'thicker' fluids helpful. (And whilst it may not be current advice,, lots of kids of mners were weaned at 16 weeks when that was the current advice). Advice changes. Lots of refluxy babies find dealing with thicker stuff easier. (And I know that it should have been 'your' decision, but sometimes we do get a bit tied up on what the rule book says, and are afraid to try things that might be beneficial).

Obviously you want to crack on and not wean her at this point, but if it was my baby, I'd be considering slightly early weaning, with lots of milk added in, as I knew she found it easier to deal with.

That said, I've had two reflux babies and then a third with very low tone due to cerebral palsy (so tube fed, then all sorts of feeding issues because of the low tone which was similar to reflux for obvious reasons). In the 'just reflux' cases, it was eased a lot when we introduced weaning, and in the third case, we had to thicken all fluids (including expressed breast milk) as she was unable to deal with any thin liquids at all.

If she is showing no signs of dehydration, then that's great - you just need to work on making her more comfortable. No one wants an unhappy baby, but that's an easier fix than a severely dehydrated baby, iykwim.

We used gaviscon and other meds on and off, but tbh, time and weaning were the major benefactors. And I speak as someone who spent way too many hours crying at the gp and a and e with a baby that refused point blank to feed and screamed blue murder if fed during daylight.... (We went nocturnal with no.3 as her muscle tone was more even at night, and she was better able to coordinate a suck).

purrpurr Mon 09-Sep-13 16:03:35

I'm seriously considering early weaning now but i would never convince my DH. I'm convinced now it would really really help.

MiaowTheCat Mon 09-Sep-13 16:10:57

Could it be allergy issues as well as reflux? And as for early weaning, I've just been told to go for it (sticking to the no-nos prior to 6 months obviously) by dd2s dietician in an attempt to sort out her reflux (dd2 has milk allergy coupled with reflux, sorting the allergy part out onto neocate at least made her reflux into happy chucker status).

surprise11871 Mon 09-Sep-13 16:17:36

Hi my.little one suffers from horrendous reflux and silent reflux if ur not comfortable with adding baby rice to babies bottle what has helped my lo a bit is ranitidine but also a thickener prescribed by the doctor called carabel it thickens the milk helping it easier to digest as well as drink it also has extra calories in it to help wiv weight gain. It is made by cow and gate and specifically made to be added to a babies bottle but you will need either a fast flow or variflow that. As someone whose little one was a struggle to get 90mls down him in an hour and therefore wanted feeding every 2 hours i give u my sympathy and i.hope you get the help needed soon. It hasn't been 100% he still suffers with some foods like apples but weaning helped a bit although at the time i was worried he would take even less. To my surprise he started taking 5 ozs ever 3 hours

inneedofrain Mon 09-Sep-13 16:23:44

Purrpurr, could you show your DH this thread? I´m sure you can´t all go on like this, i know that I weaned early and I think everyone one of my friends / relations / mothers I know with reflux babies all did too.

yetanotherworry Mon 09-Sep-13 16:27:31

I had a BF refluxy baby. I used baby rice instead of drugs to calm his reflux - it worked! We didn't wean early apart from this. You don't have to wean, just give a spoon of baby rice with each bottle. In terms of his gut development/allergies, it isn't going to be any worse than giving him ranatidine and other drugs (I saw it baby rice as being a safer option).

purrpurr Mon 09-Sep-13 16:31:30

Inneed, my DH is very much a rule follower, it would be insanity to wean 2 months early in his view, because official advice says not to. He may bend and discuss it at 5 months potentially but I'm not sure. I don't know.

Miaow, it could be, but I'm scared that she will need to present as poorly before they'll even take us seriously and we are working round the clock to try to at least maintain her weight and relative health - hydration and so on. I can't take my foot off the gas for more than an hour. I can't let her get sick. What do you mean by no nos before 6 months?

AnyaKnowIt Mon 09-Sep-13 16:31:45

dd was weaned at 4 months due to reflux. I gave her solids first then milk and it use to stay down. if she had milk first then everything used to come back up

purrpurr Mon 09-Sep-13 16:36:21

Yetanother I think it would be an easier decision to make if it were just my call to make, because your reasoning sounds fine to me. My DH would say, if medication was that severe that rice was actually a safer alternative, why wouldn't they prescribe that instead? And I'd struggle to answer that. It's a difficult and emotive topic.

purrpurr Mon 09-Sep-13 16:39:40

Anya, that makes sense to me. My DD + severe silent reflux + a liquid diet = disaster. I've just suggested to DH potentially making up a bit of the Heinz baby porridge with formula, so the porridge is the vehicle to get all the relatively nutritious stuff of formula into her, but it's not been taken on board. Sometimes being married means you're just frozen and ineffective as a parent. My instincts are telling me we need to make some changes but I may have to ignore them
sad.

inneedofrain Mon 09-Sep-13 16:46:01

Um sweetie the rules are bony working for your dd!

She needs something different to the rules

Can dh explain to you why he won't consider anything but the rule book? In my experience and I've got quite a bit babies and toddlers none of them ever fully complied with the "rule book"

We have a lot of guidelines and suggestions as parents but what it comes down to at the end of the day is what we feel right doing and what is right for each individual child

inneedofrain Mon 09-Sep-13 16:46:54

Bony= not sorry on phone

AnyaKnowIt Mon 09-Sep-13 16:47:06

I would give it a try. if no change then nothing gained nothing lost.

plus its a hell of a lot better then trying to force feed

PoppyAmex Mon 09-Sep-13 16:50:11

purrpurr I have no direct experience, but my heart goes out to you; I hope the medication proves effective today.

I'm very much a "rule follower" by nature, but might be worth pointing out to your DH that most of our generation was weened significantly earlier than 6 months and while it might not be ideal, it might make a huge difference to the level of comfort and well being of your baby at the moment.

Best of luck and look after yourself

PlotTwist Mon 09-Sep-13 16:57:53

Baby rice used to be for babies 12 weeks and up, and then they changed it to from 4 months. One size does not fit all with babies. If she takes her milk a lot better with a bit of rice in it, I would go for that like a shot, no matter what the rule books say.

prissyenglisharriviste Mon 09-Sep-13 16:58:47

Ah, dh is still in thrall of science, and believes that the men in white coats have all the answers. It's a very masculine way to be, but to be honest, we are all brainwashed that medicine has all the answers.

Having had a properly complex kid, and moved around a lot, I've learned from experience that different doctors will prescribe completely different things (and indeed nothing) for exactly the same diagnosis. grin

Modern medicine is a wonderful thing. It saved dd2's life, and I am a huge fan. However, I have a brain, and am able to comprehend that 'science' isn't anywhere near as 'scientific' as the men in white coats would have you believe. And they in their turn have all been brainwashed into believing that further and newer drugs are the answer, by their univefsities and the pharmaceutical companies. Sometimes they are, but sometimes, they aren't.

And if baby rice works, (and I'm betting he he was weaned at 16 weeks himself with no lasting complications) then I'd rather use that than domperidone. Sometimes life is simpler than multinationals and 'science' would have us believe.

(I'm not dissing medicine, nor reflux medicine. But if barely early weaning works, why bother with it? Sme children need it, and need it badly, from newborn. If you've managed to get to four months, and rice is helping, and there are paediatricians who DO recommend early weaning for reflux, I'd consider it).

And I'd be a bit embarrassed that I was still in the thrall of science when evidence proves they might not know everything. Babies don't read rule books. Nor do they listen to science lectures or pharmaceutical companies who are in it to make money.

yetanotherworry Mon 09-Sep-13 17:00:04

I was the same as your Dh except I worried about the drugs too. My paediatrician pointed out that nobody is allergic to rice! Get him to look up the contents of the medication that has been given to your dd, it may make a difference to him. I do BF-support and the baby rice approach is apparently becoming more mainstream now. However, the WHO have done such a thorough job of convincing us not to wean before 6 months that people would prefer to give medicines rather than rice. Your DH needs to see the baby rice as medicinal rather than as food.

(sorry, I've not said that very eloquently but kids are fighting over the TV)

Message withdrawn at poster's request.

lougle Mon 09-Sep-13 19:14:08

That's why carobel may be a really good approach. It has a similar effect to baby rice, but is a 'food for special medical purposes' - that should reassure your DH.

MsPickle Mon 09-Sep-13 20:00:18

I wonder whether it's a issue of vocabulary? "Weaning" implies moving away from milk as the primary fuel source. What you're discussing isn't weaning, it's adding baby rice or similar to her milk to protect her primary fuel source. Could he see it like that? Parenting as a team will mean that you often will differ in opinions of the best thing to do. Neither one of you should position yourself as the ultimate arbiter, I know it's hard to imagine now but there are further difficult trials yet to come! Especially when sleep deprived and worried it's hard to communicate calmly and rationally but both trying to will help!

And I second others comments about babies not following the rule books and also about thinking about the guidance and the 'best practice' we're offered and then doing the best thing for our children.

We didn't find thickening helped dd (so I'm jealous of those it did!) but squeezing Carobel in (made with water or expressed milk, she was bf) could sometimes soothe her enough to get her to take a proper feed.

I've used a Plum Multigrain porridge for breakfast with both my dc as it's a useful carrier of fruit/yoghurt etc but has a bit more nutritional value than straightforward rice.

Early weaning advice (from hospital dietician when we discussed seeing if it would help dd, this is what I remember)

Gluten free (no wheat etc, I'm GF anyway, happy to elaborate further if you'd like)
Dairy free
No honey
No refined sugar/added salt
Cautious with eggs

Alexa007 Mon 09-Sep-13 21:41:57

Hi, sorry not read every post but u have huge sympathies from me. We have a now 6 mo, severe reflux, struggle to drink 300ml per day (even now!) i was absolutely distraught for weeks. and before medication she would not take more than about 20ml at a time (now around 90ml). It is absolute hell.
We started weaning at 15 weeks. It has transformed our lives!! She loves thick purées, still hates milk even on all the meds. We luckily have private health insurance and that's what we were recommended to do at the Portland children's hospital. I wouldn't even think twice about it if I were you!

mrsmarzipan Mon 09-Sep-13 21:59:57

Sorry not read every post but looks like a lot of others have been in your position too. My dc3 had bad reflux which turned out to be a cows milk allergy which he thankfully grew out of but now is being investigated for gluten and wheat intolerances so I can understand where you are coming from.
My advice is to prepare for all appointments. Write everything down. What all the problems are. What you have tried. What you feel could be the cause. I find this helps the doctors realise you are not just an emotional paranoid first time mother. It says this is the issue, this is my worry and I feel it could be reflux/allergy because of this. I always do this and have found it helps a huge amount.
You know your baby and the discomfort they are in every single day. If you don't get help from one GP make an appointment with a different one. Good luck and fingers crossed the meds help.

sandberry Tue 10-Sep-13 21:34:57

Get your DH to read the actual WHO guidance on weaning. There is no evidence on optimal timing for weaning in formula fed babies and if she is 17 weeks old or more then the limited evidence would suggest it is fine. Weaning is likely to help.

Demand the GP refer you to a paediatric consultant, preferably one who specialises in infant reflux and a dietician for advice on early weaning. I'd also ask for an extensively hydrolysed formula as there is some evidence that 70% of babies with significant reflux have a cows milk protein allergy. If they are reluctant suggest it as a trial.

I hope things get better for you and your baby.

Kafri Tue 10-Sep-13 23:52:50

Another mum here with a refluxer...

We tried everything

Started off BF but then stopped feeding so I got scared and went to bottle so I could see what he took
Moved on to cow and gate

At 3 weeks was prescribed gaviscon
Then a few days later LF milk
Gaviscon made him constipated the worst week EVER so prescribed lactulose
Prescribed ranitidine and CMP free milk
Ranitidine didn't help much so prescribed omeprazole with his CMP free milk

Other than that - time.

BUT - we had a very supportive medical team so I would defo go back for another opinion if things don't continue to improve.

thebunnies Wed 11-Sep-13 00:12:32

DS(3) had reflux from a few weeks old and has only recently been able to come off meds. Took a very helpful consultant and lots of trial and error to find a combination that worked. We needed all of the below together, if we missed out any of them then it just didn't work.
- no dairy, used Nutramigen formula milk
- Gaviscon in milk
- carobel thickener in milk ( a special "Y" teat works best with this thickness of fluid)
- losec ( omeprazole) twice daily. Can be awkward to administer when tiny ( we use syringe) but gets easier once you use apple purée.
- slept on tummy ( with breathing monitor )

Find a good paed gastro consultant quickly. Otherwise you just get fobbed off as a neurotic mother which is so frustrating. Make some videos of feeding time, a good paed will pick up on behaviours e.g. head movements that may indicate reflux and keep a diary.

Good luck, it gets better but I really found that hard to believe in the first few months so you have my total sympathy. PM me if you want details of a great paed gastro in London.

tasmaniandevilchaser Wed 11-Sep-13 10:48:45

hi purr (it's Tas from the May thread). So sorry to hear it's been so hard for you all. I think you need to get some good medical advice, your paediatrician sounds dreadful. I'm the last person to advise early weaning, but it sounds as though something to thicken up the milk is just what your LO needs. I think our LOs were born on the same day? 17 weeks this week? I wouldn't be too stressed about weaning now, especially something gentle like baby rice with the milk. Hope you can bring your DH round. What did he say when you found out your Mum added baby rice?

If it makes you feel better my DD never took much milk in (because of a undiagnosed tongue tie) but is and always was perfectly healthy, and is bang on 50th centile now at 4yrs old. She put on weight dramatically when she was weaned.

Anyway, hope it's all getting sorted now, keep us posted if you can.

tasmaniandevilchaser Wed 11-Sep-13 10:52:27

ps carry on trusting your instincts! You are doing a very good job and this horrible phase WILL pass x

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