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Original poster

ANYONE KNOW A BABY WHO DIDNT RESPOND TO DRUGS FOR REFLUX?

19 replies

mad4mybaby · 10/03/2009 16:03

I started athread yesterday (im sorry but dont have time to retype so will link

www.mumsnet.com/Talk/childrens_health/718107-what-would-u-do-if-this-was-your-baby

any am trying to find anyone whos baby didnt respond to drugs for severe reflux and what happedned to them??

OP posts:
Original poster
mad4mybaby · 10/03/2009 16:23

bump

OP posts:
Original poster
mad4mybaby · 10/03/2009 18:04

sorry bumping to try to keep active as desperate

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EachPeachPearMum · 10/03/2009 19:57

Bump for evening people... sorry lo is no better mad4

rubyslippers · 10/03/2009 19:59

hi there - I have been on a couple of your threads

i am sorry that he is no better

there is an amazing forum on BabyCentre "babies with reflux" and the advice is brilliant

i am not sure what to suggest except taking him back to A & E to see a Paed

my LO had silent reflux and it was awful to see him in pain so i have every sympathy for you and your DS

foxinsocks · 10/03/2009 20:02

well mine didn't really (respond to all the meds)

what symptoms are you worried about? is he being sick a lot or is he stopping breathing at night or is it thescreaming?

you mentioned that he was 'lactose intolerant' (I think). How do you know this?

Have they looked at allergies?

also, what formula is he on?

both mine had bad reflux....dd had major problems with gaviscon. She was put on nutramigen and that helped a lot (because she had a diagnosed milk, egg and soya allergy that was only picked up later but must have been contributing).

pagwatch · 10/03/2009 20:05

mine was prescribed several things for reflux none of which did any good. As he got older his vomitting stopped bur he had terrible bowel incontinence.
I found out several years later he had very severe casein intolerance

Original poster
mad4mybaby · 10/03/2009 20:07

thanks guys. he is on nanny goats milk as all those hydrolysed milks upset his tummy and he had already been diagnosed with the intolerance (ds1 being allergic and me and dh being intollerant!) its all worrying me. The stopping breathing im used to but am petrified one day he wont snap out of it and he is in alot of pain and it is causing problems in our household as me and dh always arguing about it (he works away alot and im having to cope on my own) plus its causing probs for ds1 as hardly have time for him (he is in preschool) and also more importantly he cant sleep well. in the day he sleeps for about 20 mins then wakes in pain and cant settle him asleep. This happens at night but he is so tired he usually crashes out. Ive been researching and came across laryngopharyngea reflux. just wondering if any of you have?

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foxinsocks · 10/03/2009 20:08

sorry undiagnosed I meant, they were diagnosed subsequently but we were almost certain she had allergy issues

foxinsocks · 10/03/2009 20:10

how old is he?

Original poster
mad4mybaby · 10/03/2009 20:10

16 weeks

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foxinsocks · 10/03/2009 20:13

the other thing that was subsequently diagnosed was a hernia

awww 16 weeks is still tiny

tbh, it was that age I found the hardest with both my refluxy ones because you can't really sit them up much

are you propping him up as much as poss and leaving as big a gap as poss between feeding and naps? (I'm sure you know this already!)

Original poster
mad4mybaby · 10/03/2009 20:16

yeah because ds1 had it but he was projectile vomitting im used to dealing with it and know what to do but im sick of how we are being treated and they dont think its anything for them to worry about it. even though he isnt projectile he is more severe than ds1. he never lies flat. well only when he rolls himself over and that isnt quite the same as his head is up. have a wedge in the cot and a good chair that is very upright

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foxinsocks · 10/03/2009 20:18

we got treated very badly too

at the time, I was at my absolute wits end tbh. It's only now that I can look back and wonder how I got through that stage with my mind intact.

I think, especially if it affects his breathing, you need to go back and insist on seeing someone else. It is mysterious though that none of the meds are working (you'd expect some but not all!).

Do you think it's possible he has a touch of colic too that's adding to the screaming?

foxinsocks · 10/03/2009 20:21

is the doctor prescribing goat's milk? We were told to avoid it as they felt there was too high a chance she'd be allergic to that too.

Are you sure he's not reacting to that milk? Did he try all the hydrolysed stuff?

Original poster
mad4mybaby · 10/03/2009 20:21

the only thing that has made a diff is being on this milk, adding carobel to it plus have started weaning (under paed advice) we did this early for ds1 for the same reason and that has made him alot happier. this isnt a solution though as milk will be his main food for ages and not until he eats proper food will it help stop coming up. what do you think about that lary thingy i said below?

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Original poster
mad4mybaby · 10/03/2009 20:22

they didnt prescribe it,she just said that we should try it because of ds1 and that we had tried so many of the hydrolysed ones..

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foxinsocks · 10/03/2009 20:30

think that's like silent reflux isn't it...I don't know to be honest

with mine, the weaning made them worse so I actually did it late (just meant they were still bringing stuff up but it was solid!)

I think, at 16 weeks, he's hell of a young to have tried lots of different formulas and medicines and maybe he needs a bit of time to settle? Also, at this age, their weight changes so much that they need to keep adjusting the size of the doses so you need to keep an eye on whether they are giving you the correct dose for the medicine they prescribe.

I think all you can do is either wait for your paed appointment if you feel he knows all the histoy. However, if you are worried about his breathing at night, I would take him back tomorrow and ask to see someone straight away as that is a serious medical concern that needs to be addressed immediately and I'm sure they will listen to your concerns about that.

foxinsocks · 10/03/2009 20:32

sorry, that sounded a bit dismissive

I wanted to say that I REALLY feel for you. I understand the desperation and the SHEER AWFULNESS of having to deal with a screaming child hour after hour after hour.

I really really do feel for you.

All I can say is PLEASE keep on fighting.

ANother thing I found helped was taking dh to an appointment. I found that taking him meant it was VERY clear that we took this seriously and weren't going to go away.

Please let me know how things go

Original poster
mad4mybaby · 10/03/2009 20:33

thats why i took him to hosp last thurs as weds night he kept stopping breathing loads that eveing and they just said that because he wasnt going blue or anything it wasnt anything toworry about and that its quite normal for small babies to do it! I think its linked to his nose being stuffy/cough etc that has been on going

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