All new deluxe reflux support thread

[buttonmoon78]

Welcome one and all!

poppet45 once she is weaned then boiling prunes for 5 min in water and mixing it with ripe pears then make it into a puree. it becomes a lovely sweet puree that your lo will love and helps with constipation instantly! i used to mix it in with weetabix.

I suffered the trauma of wearing a v neck top today. You know how when its a normal crew neck top you just have to change the top when you're covered in spew?

Oh, not with a v neck - shower, new top & bra!

I am quietly optimistic that the new meds regime is having an impact of sorts. Its too early yet to draw any real conclusions but there are promising signs. Weaning again as of this weekend.

started on ranitidine today! fingers crossed. am full of optimism but fear things may get worse before better. back onto 2-3 oz feeds only, little sleep and generally not happy at the moment.
had 3 wonderful days last week where she fed well and slept well. dont know why its all gone wrong.
oh well, lets hope ranitidine works

Hello! Just booking marking my place. Thanks for pointing me this way Buttonmoon.

Im going to go back and read the thread now.

5 week old DD2 is having massive crying fits until 11pm each night, often later. 3am is our current record. She doesn't actually vomit but I can hear milk coming up and she sometimes looks like she's chewing (does that sound odd?). She won't let me feed her lying down and often wakes up just screaming which scare the living daylights out of me. Burps upset her greatly.

DD1 had colic so I had just assumed this was the same hell but mum (who is a gastroenterologist) said last night she suspects reflux. Unfortunately she doesn't see children so recommended I try my GP.

My GP is a reluctant prescriber/referrer so I don't hold much hope of him taking me seriously.

I'm also going to eliminate cows milk & caffeine. I don't think I have much cows milk anyway but I'm not sure how much it would take to upset DD.

So, hello! I'll be back once I've caught up.

Well from reading the thread it definitely sounds like DD has silent reflux & maybe CMPI.

Can anyone give any pointers on the elimination diet? What can I eat? My day starts with two cups of tea and toast with butter on it.

Well, not that for starters! I found that any milk which is not cows is gross in tea but others say soya can be ok, or oat. Vitalite or pura or something of that ilk is good.

You'll need to absolutely eliminate all cows milk from your diet so check all labels religiously. Once you know that you've been free for a month (or often much sooner) you will either see a huge improvement or if not you can reintroduce it slowly to see if there is a change.

If your mum is a gastroenterologist, see if she knows of a good paed one. Your gp cannot refuse to refer you so going with a name might be a good plan.

Be strong - it is down to you to try to stop the pain your daughter is experiencing. One paed told me that as ds was gaining weight the issue of pain was not important. He won't be saying that to anyone else in a hurry - and I told our new paed on Thursday so she was going to 'ave a word' too

Good luck - and hang about here!

Any news kelly?

I've spoken to our paed's secretary today with a view to increasing his domperidone. Generally he's a lot happier as he does seem to be less acidic but he's as sick as ever and that upsets him too.

We're on 1.5ml x 3 daily which I think is quite low - she said she would prescribe an initially low dose to leave room for maneouvre upwards if required.

Sorry - 4 x daily

Well i spoke too soon, a shit evening followed by a shit night after a fairly shitey few days - apart from yesterday during the day when things felt a bit calmer. DD on ran and double her dose of domp cue inconsolable crying - so have reduced the domp to 3/4 of max dose. She fusses and strresses during each bf but doesnt cry much now i basically dont put her down so the screeching was awful. She is also sleeping on me every night and i'd just like to lie down and sleep on my own. We've gone through hell since she arrived 13 weeks ago and i just feel like she deserves a break from pain.

Well I lasted almost 2 days on the dairy free diet (oat milk tastes like crap, doesn't it?) and then had a ready meal with cream in it so it all went out of the window last night. However, DD2 slept wonderfully last night. Not one second of crying.

My HV has suggested infacol but I thought it didn't have much effect. She doesn't seem to have difficulty passing wind it just bothers her at night (burps).

I'm also going to see my GP about my feelings of not coping & DD2s crying (assuming it resumes over the weekend). Hopefully we'll get things sorted.

Oh poppet that sounds amazingly difficult. How are you doing? I don't know anything about reflux really so I can't comment but I wanted to say I'm thinking of you.

Bless you kelly sorry i didnt wave earlier - having to type - and indeed do everything one handed. i had a ready meal with lots of dairy in it last night too... wonder if it is cmpi too. argh i dont have the mental energy to plan a dairy free diet but i cant give up bfing after 9 weeks of expressing 11 times a day foe dd in the nicu, it'll destroy me mentally - help!

i think things are improving on ranitidine and domperidone. she is taking 5-6 oz at a time instead of 3 and seems a little more settled and last night she even fell asleep on the bottle which is unheard of.
my new problem will be that now she is feeding i dont know what she is like when she is hungry or tired because i've only ever really seen her cry in pain!!
how long did people find it took before things improved with ranitidine+domperidone?

This message is more for buttonmoon than anyone else as buttonmoon was there for me where i really needed her, and to be honest I have since then been the worst mumsnetter ever, so so sorry. So buttonmoon my biggest thanks for your support it got me through a horrendous period. Also for those of you currently struggling buttonmoon is a god send!

Basically, I am posting now (and have been meaning to for ages) as I want to give you all hope. My baby fit all the symptoms you are describing. I know the pain and the horror of being awake all night trying to console an unhappy baby. I know about the countless trips to the GP only for them to ignore you or not take you seriously.

I managed fortunately, through bupa, to get a relatively quick referral to a paediatrician at Great Ormonde Street, Dr Lindley, I would highly recommend him. (it was actually quite depressing how we were fobbed off on 4 visits to the GP, but when i mentioned BUPA in passing on the 5th appointment, all of a sudden we were happily referred by the GP)

Anyway, Dr Lindley diagnosed my dc has not having reflux (despite having all the symptoms - arching / pain / crying ) but as being protein intolerant. He prescribed a special formula, neocate, and we went on the neocate formula that day. Within 24 hours my ds was so much happier, within a week it was like I had a whole new baby. He has been on that milk ever since and we have not had any problems with him since. It is incredible. He is 14 weeks now and sleeps well and eats well. Weaning we have been told to avoid dairy, wheat and soya until at least a year.

Finally, I just want to say my thoughts are with you all, and reassure you that change may be just be 24 hours away, and my only advice is mention neocate to your GPs, health visitors etc etc. It was miraculous for us and hopefully it could help you.

xxx

Aww shucks beautiful you just made me cry! I'm so pleased that your ds is much better. That corner is such a relief to turn isn't it?!

Well, spoke to paed today - we're to increase domperidone from 1.5ml x 4 daily to 2.3ml and the ranitidine from 1ml x 3 daily to 1.5ml. So I did and he was puking all over the auction!

I'm just so tired of the sick and crying. He was fighting me again like mad tonight and he always stinks of stilton no matter how often I change his clothes. He's got a nasty rash under his chin because it's always wet with acidy sick. His eczema's getting worse despite being on a dairy free formula.

I'm just so fed up. That's all.

poppet I searched online for some dairy free menu plans but found nothing edible

I had switched to something like the Atkins diet. And beans. I am not sure it was very healthy.

I can imagine how hard it is for you not wanting to stop now. After all the hard work you've done over the last almost 3 months.

Can you ask to see a dietician? So that if it is CMPI you can do an elimination diet without wiping yourself out too?

I have abandoned the diet. I think I have PND so on top of that I just can't cope with diet faff. Plus DD2 has stopped the long crying fits . I bought some baby probiotics this week though so I'm going to give her those every day. Apparently they can help with gut flora imbalance which may cause pain. Worth a try...

Soooo

Increase in drugs is having little effect (yet, I hope). Also eczema is really quite bad. I'm wondering if it has something to do with weaning him. He's only been having rice and pear so far as it's meant to be an atopic diet but I've also been told that pear is a rare allergen

Am going to make an appt with gp today for his skin as I'm currently using my cream on him which is fine while I get it free but not after that - it costs a fortune, the amount I use!

Am off today to try to buy the fridge I wanted to buy on Saturday. We had to abandon the enterprise as I got totaly out of my tree and had a small meltdown

Kelly I hope the cessation of the crying was not a short lived thing. I hope you feel better soon - are you going to have a chat with your gp?

Hi Button - just being nosy - what weight is your DS, I'm sure I need to up DT's meds but gp is a tad useless and not back to peads until Jan.

DS is 7.7kg so nearly 17lbs. Our paed will do med increases by phone. Try calling the secretary - normally pays to be nice to her!

Hi everyone, I hope its ok to join in here, i've read this thread a few times since I got out of prison hospital..... I'm a bit new to all this forum stuff so excuse me not knowing all the abreviations etc.my little girl is 7 weeks tomorrow (she arrived 17 days early though). She is gorgeous but we're having a hard time with reflux, but, like many others, I am constantly questioning myself and doubting myself - is it just me? are all babies like this? (she is my first and its been a BIG shock!!) but so much of what you describe here fits what is happening - the writhing, grunting, groaning, lack of sleep for all of us except her when she is in sling or on us, me losing baby weight due to sheer stress and losing my marbles too. Sorry this is a tad incoherent - she is having her one consistently good sleep of the day/night after her bath and in these few hours I run round trying to do stuff/eat/have a bit of a life....

I just wondered are you all sleeping in same room with babies and hubbys/partners? How is that working for you? We are now sleeping in shifts with her in another room so at least we both get a bit of sleep. I really want to try and get a routine going but maybe that's not possible? Anyone manage a good napping/sleep routine?

Also it would be nice to sleep in same room as my hubby and be a family - don't feel we've done that since she arrived really.

anyway, well done everyone its very very hard and also its been a big reassurance to read this thread tonight as earlier today i had meltdown (daily occurance) thinking I was just losing it, she was fine and it was all just me.

I hope this passes soon - for all of us.

Welcome halliwell!

Sarge You're not a shit mum. Many parents are only just working out what cry means what at 3m so to only just be introduced to the different cries means that of course you're going to be a little way behind. You'll pick it up quick enough. And if you're asked just say 'oh yes I expect so' to whatever they suggest

We're on nutramigen which is full dairy free rather than lactose free. Sounds like your gp is pretty good and willing to help - not like many you hear about!

And yes, we're now weaning. DS was 19wks last Saturday and we've just started. He seems to like it - slurps it off the spoon and swallows it well which was the concern I had - that he wouldn't be physically even nearly ready. After the pear debacle I'm now trying spple and peach which seems to be working ok. If he stays reasonably eczema free then I'll try pear again in a couple of weeks to see if there's another flare up.

Hey Sargesaweyes - thanks for your response first, you are so not a shit mum so don't even think that, the fact you are here asking about things, seeking support for yourself and your family is important for all of you. I do totally know what you mean though, I have these feelings everyday - so glad i found this thread, might be my lifeline to stay sane - got my 6 weeks check today even though she is now 7 weeks, not sure whether to try and appear sane or just weep my way through it!? Any tips?

I am a bit concerned about the Ranitidine dosage we have been given - 5ml 3 times a day - the strength on bottle says 5mg I think - does this sound a lot to anyone??? That was after the first time we saw the doc as well. I am going to ask about lactose free formula - someone I know said it made a huge difference so its worth a try....

I know what you mean about feeling its not a wonderful experience - I'm really trying to cling onto the cute moments and I can't wait for her to smile cos I need to feedback from this baby who looks uncomfy all the time!!

I feel reassured about the routine thing, each time I tell someone we are struggling to sleep, they say oh you need to get a routine, but its just not really happening - a bath every night seems to work nicely and we get a few hours of her being settled so we can eat and maybe speak to eachother, but like someone else said, the night feeds seem to screw her right up, and she grumbles writhes and groans her way through the night.

I know what you mean cos I read baby whisperer and it says you will figure out their cries, but its tough when it could be constipation, wind, reflux or just tiredness, cos I'm sure the little one can't be getting a very restful sleep with all that groaning. Oh well, it will pass it will pass.....

When did your DS start smiling Sarge? I know that they';re all different but its interesting to know.....

Hope you have a good/reasonable/bearable day everyone!!

DS is on 1.5ml x 3 daily but of the 7.5mg stuff. It does sound quite high so it might be worth just clarifying.

IME routine + reflux = stress, but that's just my opinion!

Thanks Button - I will ask the doc today - I haven't heard of anyone else with this dosage and their babies all seem older, plus, it doesn't seem to be doing anything as far as I can tell and she hates having it .

Yea, the only things we are really able to do routine wise are regular feeding times and the bath, the sleep thing and any other 'activities' are at the mercy of her and as for getting out and socialising/having a life etc, pah! Someone from my hypnobirth group has just been to bloody vegas with a 2 month old! Makes me laugh (bitterly) so much that I did hypnobirth, had no drugs during horrendous labour and hospital experience and am now having to pump drugs into my gorgeous girl - it is sad.

I never even knew about reflux before I had her.... so its a whole new worldfor sure, not one I really wanted to be part of though. Ah well....