Does anyone have any experience of Reflux indicating a wider developmental / Genetic issue?

Sorry I keep posting so much!

I had a query if anyone who has a child with reflux has been told it may be part of a wider issue?

My GP mentioned something and it has set my anxiety out of control....

We have a few weeks to wait to have our follow-up appointment with a paediatrician, which is going to be torture....

I feel like this could be a real long shot as we have all the symptoms of reflux listed....not sure why he mentioned the other more serious element...

Has anyone had this happen and it was ok?

X

[Olive_77]

My son has reflux and this is the first time I hear about a “wider issue” - not sure what it can possibly be 😊 We’ve seen a paediatrician multiple times and all I know is that you have to manage reflux until your child grows out of it - it’s a lot of work but it will get better 😊 I’d only go with what paediatrician says - I don’t think GPs know enough to be honest 🙈 Did your GP mention anything specific?

[Hidden in reply to Olive_77]

Ya she mentioned some kind of rare genetic condition that made me panic....then another GP from the practice rang to apologise saying it had no basis!

We are text-book reflux with poor weight gain, spilling up etc. Otherwise meeting all the milestones.

I was tempted to write a letter complaining about the way it was dealt with....

Thanks for your message, that was my feeling. X

[Olive_77 in reply to Hidden]

Oh, please try not to worry - if it is a textbook reflux then it is just reflux 😊 Some doctors just sometimes say something they shouldn’t say 🙈 I learned to filter out what GPs say - their job is to refer you to a specialist who has full knowledge of the issue and not make any guesses 😊

[Seb9]

What an unhelpful thing to say, I would definitely be writing a letter of complaint! I'm a right complainer, I even emailed Boots when they told my mum I could take decongestant while breastfeeding to complain about the pharmacist and their lack of breastfeeding knowledge.

Are the concerns about their weight gain coming from the health visitor and GP or is it a concern you have because they're on the 2nd percentile and the reflux?

If it's coming from the HV and GP, then they should be supporting you better so I would push them more and maybe ask for help from the infant feeding team and maybe ask about dairy allergies. I've several friends who have found reducing dairy has really helped their babies. They've had to cut it from their diets or get special formula milk from the doctor.

If they're not as worried about babies weight gain as you, perhaps you could let yourself relax a little bit, if baby is having wet, dirty nappies and otherwise doing well.

Maybe you could post a picture of his weight graph and I'll check my 2 percentiles weight chart to see how she did ( I did only go a handful of times and she's now not enough to hop on the bathroom scales 🙈)

[Hidden in reply to Seb9]

Thanks Seb. Yes agree! It wasn't very helpful without any basis.

The concern is he was born a higher percentile and is lower than he should be compared to his head circumference....he looks quite scrawny and for the first few months was really uncomfortable after feeding and reluctant to take the volume of liquid needed in a bottle....he is hovering around the 1-3 percentile.

Both HV & GP were glad he was gaining weight along a percentile line....but obviously he never seems to increase any percentile. They were both concerned so did refer us to a paediatrician....

The consultant we spoke to last week told me to stop weighing so often! I was going to a weight clinic once a week! She said that is too anxiety provoking for me! 😆

[Sunflower35]

I can understand the stress… I went to a paediatrician as she upgraded from crying (which she did regularly because of the discomfort) to screaming at one stage, and the paediatrician reassured us she was perfectly ok and that she had reflux but not to the point that would need medical intervention, just a few changes in breastfeeding position and infacol. I can tell you she is perfectly fine now (and still loves a good scream here and there lol). It will get better!

[Hidden in reply to Sunflower35]

Ah thanks for this. Yes it seems like reflux, although really traumatic at the time seems to pass for most people.

Appreciate you sharing this!

Xxx