To ask for a referral?

[momentofmadness0]

Sorry, this might be long. Backstory is that DD1 had awful reflux as a baby. We spent ages trying each medication in turn with little or no effect. We were constantly messing with dosages and different combinations and nothing seemed to work. Finally when she was 8 months old, after 3 solid nights of her screaming in pain all night, I broke down in tears in the doctors surgery and begged for a referral to a paediatrician. It took a couple of weeks to get an appointment but when she was seen, they recommended putting her on a medication called omeprazole. Within days, it was like having a different baby. All her symptoms disappeared and she went from constantly crying in pain and throwing up to being a normal, happy baby. From chatting to mums of other reflux babies, it wouls seem that our story is a common one and that babies with moderate to severe reflux generally dont get relief until they start taking omeprazole which can take months to be arranged and quite often has to be pushed fr by the parents. Unfortunately,DD1's sleep didn't improve even once the reflux was under control and she continued having multiple wake ups a night. Both the GP and HV felt that it was a learned behaviour as a result of spending every night awake due to the pain of the reflux. She didn't start to sleep through until she was 2.5 and even now at nearly 4 years old, her sleep can be erratic and unpredictable. I completely believe that this is due to not getting her reflux diagnosed and treated early enough and my biggest regret as a parent so far is that I didn't push the doctors hard enough to get it sorted earlier.
Two weeks ago, DD2 was born. Initially everything was fine but over the last couple of days, she started showing signs of reflux, getting progressively worse. I took her to the GP,explained the family history and asked for her to be put on medication. GP suggested infant gaviscon. I know that this is the first line medication but politely asked to bypass it and go straight onto ranitidine due to the fact that a)infant gaviscon only tends to work in milder cases and DD2's symptoms are worse at this point than DD1's were and b) it tends to make baby constipated. GP said that she sympathised but still had to try infant gaviscon first to see if it worked. So I agreed to try it. DD2 got progressively worse despite the gaviscon and I ended up having to take her to the walk in centre because she was constantly screaming in pain for hours on end and i just couldn't settle her. The doctor there agreed to give ranitidine and we are currently24 hours in and waiting for it to start working properly, although we have seen some improvement already. From my experience and research last time round, I know that there is a good chance that the ranitidine will bring some relief but that it will probably not completely cure all her symptoms and that its effect may be temporary. I therefore want to get her on omeprazole as soon as possible to get her comfortable, prevent the hours long screaming sessions and hopefully head off any sleep problems before they form. GPs are generally unwilling to prescribe omeprazole to babies so she will need to see a consultant. I have a feeling that the GP is going to think IABU in pushing for a referral so soon, without giving the ranitidine chance to work but I have been down this path before and want to get this problem sorted before we have to go through weeks or months of seeing another aby in pain and feeling helpless because we can't stop the pain. AIBU to ask for a referral so soon based on my experiences last time? I am happy to pay privately if necessary to get her seen.

I think you need to remember that this is not your first baby. It's a different child.

You may believe you are doing the best for your second child, and still harbour misplaced guilt about not pushing sooner for your first- born, but it would be a mistake to rush into medicating a tiny baby with stuff it may not need.

All babies are different.

My first born had reflux. My second looked like he did, but he didn't (his was in the end more allergy related). My third had brain damage (and reflux, but as she was tube fed it was all a bit complicated - we went for the infant gaviscon)

Wait and see if the ranitidine works. Only ask for a further referral if it does not. All this 'probably' and trying to dx this child based on the last one is not necessary.

And some kids have sleep issues, reflux or not. Dd2 didn't sleep until 2.5

They are all different, and sleep deprivation in the parents is the worst. It exacerbates misplaced guilt and makes you short tempered and demanding.

Your experience last time means diddly squat, I'm afraid. Different baby.

That said, the squeaky wheel gets the oil, so I'm sure that if you moan loud enough, and long enough, some doc will write your baby the prescription you want, whether she needs it or not.

If you can afford it, then go private. You will not need a referral, you can just book and see one. I've bypassed gps for years with my D&C and just taken them to see paediatricians. They are great and will call your GP if needs be and tell them what to prescribe, it saves all the faffing.

Where are you in the country? I'm in London and know an amazing private ped, feel free to PM me.

*dc I meant!

Please treat each of your children as individuals...please.

Dh has 2 children, DSS who is 7 and dd who is 10mo. DSS had moderate reflux when he was little and his mum took him to the doctor who gave them the usual advice etc however they took it very very literally and limited DSS on so much food and drink that he has now developed phobias around food which they cut out because they were told then were possible triggers. So now DSS will not eat anything refrigerated because he has it in his head that anything too cold will set off his reflux. He has never tried anything containing orange because he is convinced it will make him sick. We have put orange into his meals, even given him ice cream but called it something else so he'd eat it. He loved both orange and the ice cream at the time but he still won't believe he can eat it and is truly phobic - it's awful to watch.

When dd was born we were looking out for signs of reflux and hers was much worse than DSS' unfortunately. She'd be sick after every feed and pretty much every 10 mins, it was horrible for her and for us. However the doctor was again reluctant to prescribe until we'd tried things like propping her up etc which only made a bit of difference. When we weaned her, we didn't cut out any foods and she is luckily now cured of reflux somehow - it must've been an immature valve somewhere which has now started working properly. She is like a different child and there are no long-term effects whatsoever however she was the one with the more severe reflux.

It just goes to show firstly what over-restriction/treatment can do to a child's long-term eating habits and also that reflux can change very quickly for no apparent reason so every child is different. Obviously you know your own child best but please don't just assume that they will both have the same issues because they seem that way at the moment.

I absolutely think you should ask for a referral to a consultant and see what they say regarding the reflux.

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I have a child with reflux who is on ranitidine so I sympathise, especially as getting treatment from a GP can be hard work.

However I agree, they are different children. 24 hours on ranitidine is not enough time to see it work, give it at least a week. I doubt you will get omeprazole after 24 hours.

Give it time. I think you've got it in your head that the reflux won't improve unless DD2 is on omeprazole, which isn't necessarily true. Give the ranitidine a chance first.

I worry about future children and reflux as we too had an awful time. My DS also has a cows milk protein allergy that can be related to reflux, so there are other things to consider rather than just jumping to omeprazole.

I hope things improve, don't assume it won't. If it doesn't then ask for a referral.

Thanks for all your replies. I do understand that they are different children but having gone through such a bad time first time round, I am keen to avoid it this time round. And DD1 is now a happy healthy almost 4 year old who has been free from meds for 2 years and has no food issues whatsoever. But I do think you are probably right and I need to give it more time for the ranitidine to work. It is just so hard seeing her in pain and the sleep deprivation and hormones don't help either.

Loopylouu thank you but we are in the North West so London would be a bit of a trek for us. I have managed to find some private paeds within driving distance so have a plan B in case the ranitidine doesn't work. Will give it another week or so and see how things develop.

We had to pay to see a private dermatologist (DS also has eczema, again linked to the reflux and cmpa), as the GP refused to treat it. There are some excellent private doctors at the Portland hospital who also do their NHS work at GOSH and Evelina. Incase you ever think about paying.

You would be U to rush down the private paed route to ask for a stronger drug without giving the ranitidine a chance to work. 24 hours is not nearly enough time.

Sorry, I have to disagree with most of the other posters. By all means get a referral. you know it's going to take months to get through. By then the Ranitidine will have had a full test, and you may need the help. In any case it is clear there's a problem, and the fact that you have seen this all before means you are probably a good judge of what's what, and I don't see why any good doctor would blame you for escalating quickly.

A private referral will take days, not months.

Op (and some others) seem to imply the Gp is somehow withholding treatment you "know" will cure your child and, of course will not cause them any harm, ever....

You do not , maybe realise that omeprazole etc are not licensed in babies- not only are you giving medication that was never tested on babies ( instead has been tried in a dose that experienced docs think is right...and the effect inferred from big kid or adult studies). A doctor giving a medication outside the licence takes full personal responsibility for any adverse effects. We just do not know that these drugs will always be safe, we have to know that everything else hasn't helped, and that on balance the benefits are likely to outweigh the risks. Can you see why a Gp might just feel a bit twitchy and feel they have to make sure all the other options have been explored for your precious bundle ?

By all means ask for a referral but just step the other side of the consultation a bit too. Reflux is bloody miserable, affects sleep etc I agree but very rarely causes serious long term problems.

I would just get a private appoinment, at least your mind will be put at rest if nothing else.

You need to give it a chance OP before you put all your efforts into pushing for stronger medication.

I know it's really really frustrating, but as people have said this is a different baby and you still need to follow the step by steps, doctors don't first try weaker meds for nothing, they do it to see what works best without pulling out the big guns and rushing towards more heavy and unneeded intervention.

I hope your DD2 gets better soon, I completely understand how bad it can be because my reflux resulted in a ruptured oesophagus.

Get a private opinion. Yes, they're different children but there are family susceptibilities, and your concerns are not unreasonable. Some posters seem to have the impression that you're demanding a certain medication, but a referral would just be seeking a specialist opinion, and GP's are not specialists. The GP isn't wrong, he's following guidelines - but if it were my child and I could afford a private consultation, I'd go for it.

It's quite clear from the OP that she want's a referral so she can get her child omeprazole, it's there in black and white.