What do you wish your doctor had told you?

[pana]

I think a lot of us feel that we've had the run around one way or another from various doctors and health professionals, and it seems that as common as reflux is that many doctors don't know an awful lot about it.

So... What have you learned that you wish you had been told? For me the answer would be just about EVERYTHING! Whittling it down though, I think that knowing how to give the meds properly and learning about cows milk intolerance were key things (gotta love the internet). And also the reassurance that it is NOT normal to dread feeds or to have a poor child that screams bloody murder and suffers dreadfully with attempts to drink. Also that just because a baby has not progressed to FTT and manages to be on the chubby side (God only knows how that happened; I put the credit on expressing so frequently so lots of hind milk) does not mean that the whole thing is in your head.

What does every one else think?

[scarlet121]

I wish someone had told me that reflux could go past one, I used to hope and pray for one and actually thought something else was wrong when he wasn't magically better.

That reflux babies generally have a hard time digesting food, and that if it sits for a long time they reflux longer. For us, smaller more frequent meals would have been better.

That if your baby refuses the breast, he will probably reflux the bottle worse, so don't stop breastfeeding.

A reflux baby will starve themselves.

That a refluxer can go from thriving to FTT in a couple of weeks.

That it is not normal to have no wet/wet nappies a day.

Milk and soy proteins are equally hard to digest.

Lactose free is not the answer

It is not normal for your baby to scream 12 hours a day

It is not spoiling if you hold them while they sleep

That there are different medicines than zantac

That silent reflux is twice as painful as normal reflux, as it burns both on the way up and down

OMG I could go on and on and on

I suppose looking back the worst thing I did, was think that someone was going to notice Parkers severity, when I thought we were handling it well. I was naive and knew nothing of this diesease and wish I had reasearched it sooner.

[3littleboys]

Hi girls,

I'm very new to the world of reflux, so I'll be watching this thread closely - and hopefully learn somethings.

Z.

[srv]

Hi everyone. I am a paed and my 5 month old has reflux. I have learnt a lot more about the realities of having a refluxy bub since DS was born. I've thought back to what I've said and have heard said to parents of reflux babies. The big thing I have learnt is that "they'll grow out of it" is absolutely no consolation at all! and trying to feed a screaming baby fighting the feed is one of the most stressful things I've ever experienced.

If the responses keep coming I promise to pass your thoughts on to as many of my colleagues as I can.

[scarlet121]

srv funny that you say that about being a paed and how views have changed since having a refluxer. My sons respiratory physicians daughter had reflux, and she is the by far the best doctor we deal with, she understands totally when I say well the reflux makes this worse or impacts on that, she has sent us to most of our tests and been the one to diagnose most of his problems.

A lot of doctors don't put the two and two together of other things that can go wrong, like Parker had FTT, food aversions, he had diagnosed sleep apnea, ear infections, chest infections all of these things I know now were part of the reflux but until I actually had to research no one put it together (except the sleep apnea and the respiratory physician LOL)

And absolutely the worst thing is what you said, a doctor will say it is OK, they will grow out of it by one if not sooner, one is a really long time to have an upset baby. And unless you are in that situation, you don't have any idea. I didn't.

I was told Parker was highly strung and fine, when I knew he wasn't I was lucky to have another child to compare him to, but I know of a lot of first time mums who have no idea. And it takes many doctors before they get enough strength to actually say, no this is a real problem.

The other thing would be to treat a mother like they are over reacting, and that all babies cry and don't mention post natal depression.

Other things that would be handy is:
Reflux gets worse with immunisations and illness (including teething)
Give a pamphlet of ideas to help, with things like keeping upright after feeds, sleeping them in their car seats upright, or in a swing, inclining the cot, using a baby carrier (like babybjorn).
That sleep training is useless unless the pain is under control.
They should look at all the symptoms and just because a baby is overweight it doesn't mean their reflux isn't severe, they could over eat to soothe the pain. Also arching, not feeding well, not sleeping well.
Give advice to take milk out of your diet, or try a HA formula, it is easier for them to digest. Don't tell them to stop breastfeeding as generally I have seen most babies get worse if this is the only change, breast milk is so much easier for them to digest than formula for most of them.

Advice on when to administer meds:
zantac can be given at any time
PPI's should be given 30minutes before a meal and explain why, also that the beads are the medicine and can not be crushed, they are coated in a special substance to withstand digestive acids so that the actual medicine can get to the pumps to stop acid production.

If you are giving a compound, then the 30min rule may not need to apply since the beads are already crushed and do not need the 30minutes to dissolve.
In compounds, losec is best compounded at 2mg/ml for best efficiency, zoton 3mg/ml.
Although most pharmacies say the compound lasts 4 weeks, it is found that the medication starts to loose effectivness around the 2 week mark, so splitting the script and getting it compounded every two weeks is better.
That PPI's can take 2 weeks to see a difference. Zantac should take a couple of days.

If switching from zantac to a PPI, then know that zantac will take a couple of days to get out of the system and the PPI a couple of weeks to get back in and generally the child will get worse in between, cause althought the zantac was not fully cutting it, it was doing something. And once that is out of the system they get worse. The best thing is to keep them on both medications for the two weeks and then wean off the zantac over a week or so.

Splitting medication in babies is far more effective than one dose a day. I split Parkers three times, and every time I try to knock the lunch one out it doesn't work, there are really noticeable changes.

Finally if giving more than one med, space them at least an hour apart so they don't interfere with one another.

I think that is it, sorry if it sounds like a vent, I have always wished when I have gone to a doctor for them to have a pamphlett explaining what the realities are. All kids with reflux are different and may respond differently to different things.

Thank you for spreading the GOR/GORD word, it is commendable that you are taking on the task!

[pana]

.....

[scarlet121]

In the meantime the official medical stuff I read basically implied that silent reflux didn't exist and was an excuse for irritable babies so that made me doubt myself even further.

Well we have a lot of doctors in disguise! Now I see why you got on so good with the research straight up!

Pana, I am wondering do you ever think back that maybe a child had reflux but you just hadn't had the training to spot it? I can spot a refluxer in line at Ikea now (true story) I can differentiate the cries. And this will only make you a better doctor. LIke you say, you tell the mums to trust their instinct.

Silent reflux does exist, even the paed Gastro we see didn't think that it was silent reflux in the beginning, we had an endoscopy and that had no inflammation and while we were waiting for the pH probe results, reflux was pretty much dismissed (even thought the upper GI was showing moderate to severe reflux) but we got the probe results back and his score was 32, normal is anything under 12, he refluxed (and the day he had it in was a good day) 180 times.

srv and pana this will make you better doctors. Not everything that we have to do is textbook and things can get a lot worse. Though I hope not.

With regard to the CHN, get a new one. They can be a great source of understanding and support, but if you get the wrong one, can bring great anguish and pain. I go to Maida Vale and I would highly recommend her.

Also, Thanks Christy!

[christy]

scarlet121 I just want to ditto everything you posted the first time, when I read the OP I started listing things in my head & your list was it!! I think my biggest one is the breastfeeding, reflux babies can breastfeed, in fact more successfully than bottle feeding.

[Nadine216]

That collic can be "cured" by a chiropractor!!
Our neighbour is a chiro and if I had know that some bubs (espesially if deliverd by c/s) can be helped by a chiro, I would have ran over to him a 2am!
It has to do with nerves that could have been pinched when picked up out of the uterus with a c/s. That in turn can aggrivate the simptoms of collic. So by taking bub to chiro, he will gently "un-pinch" the nerve and Bob's your uncle, baby is better. Does not work for all babies, but most c/s collic bubs benifit from a chiro

[pana]

I think Scarlet has said a lot of the important stuff with regard to reflux , so I won't repeat what she has said.

Medication is not evil. Weigh up the pros and cons and if you need medication to have a pain free baby, don't feel guilty about it.

Vented bottles help to decrease swallowing of air for bottle feeders which is helpful both for reflux and colic. They remove the vacuum that builds up behind the milk which means the baby doesn't have to suck so hard, and that tiny bubbles don't enter the milk in an effort to counteract the vacuum and then get swallowed into tiny little tummies. Dr Browns work well for us, but there are lots of other vented bottles out there. They're not particularly cheap, so maybe try buying just one and see what you think of it.

Also, know that for every so and so that tries to imply that you have a baby with average needs and you're just not handling it, there are swarms of us out here that know exactly what you are talking about!

[Barb Glare]

I wish my doctor had have known about the importance of breastfeeding. And not encouraged me to go on the bottle at the first sign of trouble. Most problems can be solved whilst preserving the important breastfeeding relationship, and so may problems, especially with reflux or unsettled babies continue or worsen when the baby is formual fed
Barb

[LuluHB]

I'll go against the general rule here and say I wish I was told earlier to try formula. I persisted with breastfeeding, elimination diets, medication etc and my DD's silent reflux just got worse and worse. After seeing an alternative therapist who recommended the change to formula, I got a new, happier baby. Definitely not the answer to all bubbies I know, but I wish doctors had a more open view.

Like you've all said, I wish my paed had some understanding of what living with a reflux baby is like - instead of saying it was "you parents" who wanted to fix it, when all we really had to do was just wait for them to outgrow it because it was "natural". How a medical practitioner could think it was acceptable for a tiny baby to live in that kind of pain is just beyond me.