Newbie silent reflux mum here...advice needed!!!

Replies to This Discussion

Permalink Reply by Jenny Rawling on January 20, 2012 at 8:32pm

Hi Emma - welcome to LR. Can I recommend you get hold of the book Colic Solved by Dr Bryan Vartebedian, it's a great guide to the whole process of finding the right way to manage reflux for your baby.

I'm a bit surprised you've been prescribed domperidone early on for a silent refluxer. It's a bit controversial whether it works at all, some studies suggest not, but at the least it's a "marmite" drug - really helps some babies but hinders others. If you feel it's giving your LO tummy cramps then I'd talk to the doctor about it again. The more obvious next step would be some acid suppression, ranitidine is the first line licensed drug. If this doesn't work then you need a PPI like omeprazole or lansoprazole, but often you need to see a paediatrician to get these as they are not licensed for babies. The grunting may well be a sign of discomfort - I'd ask about acid suppression.

Bit :( about the breastfeeding - it is always the first thing to be blamed rather than actually looking at what is the problem. However, there are formulas that can help with reflux. One angle is to go for a thickened formula. Gaviscon sits like a gel mat on top of the milk, there is a thickener which works in the bottle called Carobel, or there is a milk which thickens in the stomach called Enfamil AR. Early weaning, often recommended from 4m for reflux, works on the same principle.

The other angle is that often there is an underlying cows milk protein intolerance (CMPI) and a milk where the CMP is broken down by hydrolysis (e.g. Pepti or Nutramigen 1) or an artificial formula made from amino acids (Nutr AA or Neocate) will help. CMPI affects 50% of refluxers where it persists beyond 3m old, i.e. where it's not just a gut immaturity problem that they grow out of fairly early on.

Hope that helps, I'm sure you'll pick up loads of tips from the site, and it helps just to have somewhere to vent when you need to. Jen xx

• ▶ Reply

Permalink Reply by Emma Elkington on January 20, 2012 at 10:16pm

Thank you so much for your reply Jen,To be honest deep down I knew from the start that the domperidone was not the right medication for him, but he was in so much discomfort i was willing to try anything, however, we tried it for just less than 48hrs and decided to stop it. We will go back to the GP and discuss further options. It may be a naive question but are there any ways of successfully managing this without medication?? I will look into the thicker formula, hopefully that helps a little, 
I was wondering about a cows milk protein intolerance, doea this have to be diagnosed by a doctor before I move on to this milk? 
I am hoping that this does clear up once his little digestive system matures, and/or we start weaning, if not I will definitely investigate the CMPI route if not before! 
That has all helped loads, thank you!! I already feel so much better for joining this forum. It is nice to know i am not alone in this, and hopefully learn a lot more about managing this condition. I will definitely need to vent at sonm point... as the mother in law (who I really get on with) is already saying he is just a naughty baby, which is so frustrating!!!!! Anyway, that is a whole other post!!
As always, I appreciate all of the advice and support anyone can offer. EmmaX

• ▶ Reply

Permalink Reply by Jenny Rawling on January 20, 2012 at 11:00pm

Are you already doing the management things? Wedges for cot/pram/change mat, keep upright after feeds (a sling is useful), minimum time in car seat, avoid clothing with waistbands, don't do nappies up too tight round tummy....

Unfortunately there is no simple way to diagnose CMPI, it can underlie apparently uncomplicated reflux, or there are a host of associated symptoms like tummy pain, mucus in poo, blood in poo, constipation or diarrhoea, skin rashes, wheezing. The only way to rule it out is to exclude it from the diet for a period of a few weeks and see if things improve. If there is a CMPI then excluding it can certainly reduce the amount of medication required, sor some people it will solve the problem. Perhaps a better way to look at it is if there is an unrecognised CMPI then you won't get the reflux controlled even with the meds?

Whether you can manage it without meds depends entirely on the severity of it, there is a whole spectrum of reflux - it's very common in young babies and in most it's not a big problem, which is why it's sometimes hard to get the doctors to take you seriously, you often have to deal with quite a bit of "all babies cry" and "he'll grow out of it" or "it's colic". At the other end of the spectrum there are very severely affected babies who can have problems with it for several years - and everything in between. You'll tend to get a bit of a skewed view from the forum as the people whose babies get better tend to disappear, so a lot of the mums on here have the more severely affected end of the spectrum.

For every baby you need to weigh up the potential benefits of each intervention against any possible side effects and how severe the symptoms are. There was an interesting discussion on the site recently about expectations from reflux meds and whether you should be aiming for 100% control - my take was you aim for 90% control if 100% means increased doses of meds etc, but defintely aiming for a baby who is comfortable the majority of the time and able to feed and sleep normally.

Hope that gives you food for thought. Jen xx

• ▶ Reply

Permalink Reply by MEGAN PETRIE on January 20, 2012 at 11:48pm

Hi,

 

My daughter was diagnosed at 8weeks with severe silent reflux. She is on Domperidone and Lanzoprozole. I didnt think the domperidone was working as there had been no improvement atal. After 6weeks of being on it they reviewed her and upped her dose to 3ml and have changed her milk to Aptamil Pepti ( on prescription) since the change of milk she has been a completely different baby. She was previously on Aptamil. Maybe it might be worth discussing CMPI with GP.

Hope this helps you!

Meg x

• ▶ Reply

Permalink Reply by Leeanne on January 27, 2012 at 10:29am

Hiya, my 6 week old has been diagnosed with reflux and he grunts and squirms and like you the doctor said hes just a noisy baby!!! I honestly
Think it's all connected!! 

• ▶ Reply