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 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

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now