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

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