need some support !

[Petal_339]

Hi there,
Am writing in desperate need of a bit of support. My five month old son has been diagnosed with Reflux since about 12 weeks (although I suspect he has suffered with it for a lot longer). He has been difficult to breastfeed since birth, pulling off, jerking backwards, turning red and screaming at every feed, spilling and screaming exactly 45 mins after we put him down. As a consequence his sleep is attrocious and while up until now his weight gain has been good, this has tapered. We've tried Zantac (no improvement), Losec (better) now Nexium (disaster). Now back on Losec 20mg twice daily, am so tired of grasping at straws. We've seen physio's , osteopaths etc etc. Can anyone provide some hope that this might improve ? I'm frightened my little boy will be on medication forever and the links between Losec and cancer are always in my mind.
Kind Regards
Petal_339

[RISA]

Hi,
Gosh, it sounds like things are pretty awful for you all at home, and that he is a very uncomfortable little boy. It sounds like you have tried a lot of things as well, so good on you for continuing to search for answers.

Has anyone ever suggested cows milk or soy allergy/intolerances as a possibility? Or other food issues? Have they suggested you go on an elimination diet as you are breastfeeding? That is something that jumps out at me that might need to be tried, though of course every refluxer is different, and every one responds to something different!!! Diet may not be the answer for him, but it may be worth pursuing!!!

I know it isn’t a great thought that our children are on medication, and I’m sure that when you thought about having a baby, you didn’t ponder giving them medication twice a day!! There is another perspective that might help you deal with it too, and it is….’What are the consequences of NOT medicating??”. Reflux can do a lot of damage and it can actually be more devastating to NOT medicate. I don’t know if that helps, but it might be worth thinking about that angle. It might give you a little bit of peace of mind, I hope!
Have you talked to the pharmacists at Medicine Line? About side effects of Losec? Perhaps it isn’t as awful as you are thinking either?

Can I provide some hope it might improve? I hope so, but there are no guarantees, unfortunately. As you may know, not all children do grow out of reflux, though most do. If it is a food issue, it may be resolved quite quickly, even though it isn’t always easy to follow that path. As he is only still young, there is still a lot of hope that he will be able to grow out of it. Common milestones that are given are at 6 months, when they are sitting up and taking solids; at 12 months, when they are more upright; and then 18 months to 2 yrs. It might help to know those times where lots of refluxers commonly grow out of reflux, though I wish someone had bothered to explain to me that it wasn’t always an case. I found it quite devastating as a milestone would come and go and I would be faced with the reality that nothing had changed!!!

Has the doctor tried Zantac and Losec together? Sometimes the approach of using them both is helpful, so it might be worth asking about that. Or other combnations might be helpful as well.

What does your doctor say? I take it you are seeing a paediatric gastroenterologist? If not, it might be worth pursuing that option.

Are you getting any support? As parents of reflux children, we do understand how important that aspect is, so if you would like to chat with another reflux parent, could you please let us know your phone number? (you can go to our email address info @ reflux.org.au (no spaces) and provide your number privately).

It might help to know too, that reflux can flare with a number of things, which can set up a vicious cycle that;s not always easy to break. if they are overtired, or out of routine, it can flare their reflux. same with teething, vaccinations, illnesses (even just a cold), and the really hot, sticky weather we have been having. If you can try and break that cycle, and get some sort of routine happening, it can often get things back under control. oh, crawling or learning to crawl, can also flare reflux as they spend more time horizontal rather than upright like you have tried to do for him!! I'm sure!

I hope that helps, even a little - I really hope you can find some answers, and he starts to feel more comfortable soon.

Glenda