What do you wish your doctor had told you?

[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]

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[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!