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?

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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