Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

oooh I've cried for emergency vehicles getting through too Lady, and the very squashed badger in the road! Exhaustion is a bugger isn't it? I'm annoyed that I agreed to the counsellor, and think the HV will push for anti-d's again this week. I need to stick to my guns and get past friday - expecting great things from paed! Take good care.

Will someone please tell me their secrets to keeping on top of daily tasks as well as caring for lo with reflux? Im not finding enough hours in the day to wash, clean, tidy and shop with a lo who needs to be carried and cant always sling him. Ive sacrificed my weekly vacuum for every other week (this is massive for me as im monica from friends obsessed with cleaning!) and just doing kitchen and bathroom clean weekly as for other things ??!

oh lady i have no idea. impressed you are managing all you are managing. i am also going insane with the slinging and carrying. it's all well and good those who say let it all slide but you have to have clothes to wear and food to eat, don' you?

Can't help on the housecleaning front - I've given up, which has also been a big deal for me, hence the dark couple of weeks! I can load the washer one handed and then kinda drape the wet clothes over a horse. I grocery shop online and the delivery guy is great at bringing the stuff in whilst I stand and watch wth a sleeping or screaming baby. A good friend told me to aim to do one thing a day, even if it's just wipe round the basin, and I hang on to that advice cos I can manage it! My big issue is - how do you cook??

Well cooking I agree is difficult and cant find myself trying to get the kitchen straight at night time so its less to do with a baby who's awake. I found that my DS will sit in a mothercare's own range bouncing chair the angle seems to be ok...but when I say sit I mean about 15mins max so try to get what I can done in that time. Forgot about the online shop me thinks its the way forward. As for cleaning then...one job a day you say? I must admit I feel less of a failure even if Ive just done the dishes. narmada how's you lo doing now you're ff? Have started Ds at waterbabies today, managed about 25mins without niggling and didnt cry at all so think it could be a goer. Does anyone miss the fact they dont get to 'cuddle' their baby? If he falls asleep on me I love it so I can get to hold him in a nice way not just standing up on my lap facing out or walking around facing out. I miss that:(

lady i am not sure he is any better or worse on the formula TBH. it's more of a faff but i am surprised by how un-guilty I feel :( about making the switch. i am just about the most pro-BF person you could meet...

Anmyway, things took a turn for the worse with my own health and I am now being treated for PND. I defo do have it - had it with DD and also history of depression prior. Every day is a battle. Mum is here, hubby off work being brill and doing nights, DD now started waking with bad dreams at 5.30 each morning. we are in a fairly bad place :( . Had 4 hours of screaming this morning....

Sorry not to impart more cheer but glad to hear toy guys are up to some normal stuff like waterbabies etc!

you guys, i meant

Oh, narmada, big hugs. Still, with any luck you'll start to feel a bit better soon now that you're being treated.

The cutting down on milk doesn't really seem to be working so far - today I have had one cup of tea which someone put a splash of milk in (after DD had spent half an hour screaming her lungs off at our p&t group) and any potential milk solids in other food. DD has been just as vomity as ever - if not more. I'm taking her to be weighed tomorrow so I'll ask the HV what to do. Sitting her up does nothing unless she is up 100% of the time, which I can't do (can't wear a sling as I have epilepsy, DP can't as he's possibly fractured a rib).

Don't know how much luck I'll have with potential medication though, as she's BF and only slightly under the 50th percentile. (as opposed to halfway towards the 75th when she was born + post initial loss)

TBH, it's more the fact that I can only ever put her down for a few minutes at a time, and even then she's often whining. DS I could put down on a mat and watch play. DD I hold almost all day, and it sometimes feels like she's either feeding, sleeping or whining/screaming. I know it will get better, and oddly enough when the screaming is at its worst I sometimes zone out and feel fine, but there are times (like now) when I look at her and just feel that dread of anticipation, waiting for the screaming. I'm also sick of being covered in...well, sick.

Hi ladies, been away all week visiting family which has been lovely. Lady I would definitely recommend the cranio-sacral therapy. Dd has been amazing since and its been a week now. Still giving her the Zantac but only twice a day now, she is still sick occasionally but nowhere near as much as before. She sleeps better too. I really think it's worth you giving it a go. Narmada glad you are getting support sorry that it is so hard at the moment.

Hi ladies been out on a bad week for us. DS definitely going downhill fast with night wakings and being unable to settle. narmada big hugs to you, hope things are getting easier with you and its good you have good support around you. fonts thanks for recommending head massage I think Ive found someone I will try. Hope things are still good with you. tott hope you are finding things a bit better, I agree with the anticipation of the scream, it gets me down too. We finally saw our paed today and to say im unhappy is an understatement. It probably doesn't help that the doc who saw us happens to be the one who when DS1 was 9m and having resp probs that he was just a 'wheezy' baby and nothing could be seriously wrong as he was so smiley and happy and 3 hours later He'd been diagnosed with pneumonia and a collapsed lung...the faith has already vanished. She saw and examined Ds2 and guess what...He's a happy, thriving baby! It is reflux not IBS so good job not given IBS meds. Has upped domperidone to 3ml x 4 and ranitidine 2ml x 2. Also to take one sachet of gaviscon after each feed wanted to review him in 2 months. I pushed for 1. Asked about weaning...said it will help. Told her Ive heard that's not always true...she then says yes, doesn't always help! So desperate for someone to understand and we had the give the medication 4 weeks to work lecture. Will persevere nonetheless. Hope you are all better than us.

Hi, how are you all doing? Dd getting bad again :( think I will try more head stuff, did anyone else give it a go! Got the big wedding tommorow, dd with mum for most of the day. I am absolutely dreading it!!

oh dear, sounds like the reflux rollercoaster still doing it's damndest to keep us all on our toes.

tott , surely they should treat with meds if in obvious pain, never mind the supposedly 'thriving' appearance. hope you get some relief.

lady sorry not more luck at the paed. what a disappointment. you kind of hold out hope that they will have all the answers don't you?

i really lost it this week, on verge of admitting myself to mum and baby psych unit. just couldn't see a way forward and wanted out, or to be away or something. got extreme anxiety, PND and insomnia, rattling with medication....

DS sems ok-ish on ranitidine at max dose - e,g, less crying but still squirms and grunts all night, and takes ages to settle, with pacing + dummy. DP and DD gone to in laws for a break. DP did the last 12 nights with DS straight while i had my mini breakdown. mum is now here and we are taking it in turns - wonder how she will get on with her first squirmy, grunty, writhy nightshift.....

gool luck everyone, hope you have good weeks.

Just passing through again and sorry to hear that you are all struggling at the mo. Narmada sounds awful for you - big hugs. I hope the meds will help soon and glad to hear your family are being supportive.

Lady I am so with you on the paediatrician front. We've had to wait 4 months since the last appointment (bearing in mind that DS2 is now 9 months) and the man suggested we should probably cancel it as 'he'll be fine by then'. Well, like DS1, he's not fine at all. The daily small vomits are definitely much improved (down from 20 to about 2 - to give some of you some hope!) My washing machine feels like it's on holiday after 7 months of constant washing.

However, last week DS2 was teething again and was copiously sick every time we tried to feed him milk or solids to the point that we had to feed DS1 separately as it had put him off eating too. One day DS2 only kept in 4oz of water from a syringe (and his breathing monitor went off 6 times in 2 weeks-when the paediatrician says 'healthy babies don't have sleep apnoea')! I shall be keeping my appointment in 2 weeks, taking my husband for reinforcements (I'm not just a fussy mother, honest!) and arguing with the stupid man a lot!! I too am fed up of being covered in sick!! (and have a phobia of it too-someone is clearly having a laugh at my expense!!)

Love to you all.

What is wrong with the medical profession? If you turn up with a baby who isn't actually screaming at that point in time, you're just being paranoid. And the next person who asks - is she your first, is likely to be screamed at, and not by dd! Our paed appointment was ok, and we now have the coveted ranitidine, and a review in 6 weeks - still don't know why our GP couldn't have done that though. Felt like we were walking out of the hospital with the holy grail! So far, things seem a little better, although last night was thrashy. Not sure what to say, other than, it's good to share the good times as well as the bad. The smallest thing can change my outlook - dd had a lovely giggly, chatty few moments today, with fantastic eye contact, so the rest of the day be damned - this counts as a good one. Hope you have a good night - or 'good enough'! x

Oh gosh ladies it sounds as though everyone is having awful times. narmada what can I say? Hope you're feeling more positive now and aren't mum's fab creatures, dont know what id do without mine! fontshow was wedding? Boo hiss that head massage not worked for too long. Still not got my act together about ours. Things are awful with us now. Had week away with mum and two boys and mum saw what it was like over 24hours and made me realise its not in my head! Had follow up appt for 2 months really unhappy especially as we were told 1. Went to hv on mon and luckily (!?) DS didnt stop screaming and she's never seen him like that before. Said to check on appt but thought id try him on solids to see if it helps like they all say it will. Had small bit of baby rice mon and tues was fine for half hour then had a nap both times then on waking screamed until bedtime and was difficult to settle. Tried carrot today, kept shuddering and wretching. I dont know what else I can do? Anyone else weaned who has advice...please? Hope you're having goodish week x

lady really sorry you are having rough time of it, reflux is hell i think. it is good in a way for other people to see what it is really like - eg your mum. No way is it in your head, btw. It is a shame that the paed is making you wait so so long for a review. 2 months is ridiculous. you would know if the ranitidine was working inside 2 weeks surely? i can't imagine that a doc would make an adult with chronic reflux wait 2 months for a medication review....

narmada you are so right. The domperidone and ranitidine have never worked for him and I did try to tell her that at the time. When I rang to query the appt receptionist said doc had put one month follow up on the screen so not sure what's happened. She also said I can request consultant If I want to. Said I have no probs with registrar just that one cos of prev issues with Ds1. Receptionist then lives up to stereotypical nature tries to tell me the doc had only just joined them and I must be mistaken-like id forget something like that. So mad at the mo. Too much to do and sort with no spare time to do it cos DS not good. It's a horrid horrid thing and I feel like im going mad and people think im dramatising it all. No one gets it :(

No one gets it, you are right Lady.

I have just had my postnatal check. I explained to the GP (not my usual one) that I had very severe pnd and a child with reflux. While she was very sympathetic and kind, she told me that maybe I would feel better if I had sex with my DP, and I should try and go swimming every other day. And get some sleep.

Oh, and the reflux will be gone in 5 weeks because it never lasts longer than 12 weeks.

Well, thanks for that.

narmada sex with DP? I have heard it all now lol. Where on earth do they get their training these days? 12 weeks I wish! Am intrigued to what you replied with. Id have snapped me thinks!x

I wish I had some witty riposte for her but I am just in such a mess at the moment and so I just carried right on weeping . But when I pulled myself together I did tell her in no uncertain terms that there was no chance of sex at the moment. Honestly, the thought almost makes me laugh, not because I don't love my DP but because it is a battle to get through the everyday shite, never mind the add-ons. She did make me take away some leaflets about contraception. I think we will be considering the male or female snip when this crisis is over...

Good grief! This really takes the biscuit doesn't it?!! I know that you haven't got the time, energy or inclination to complain at the mo, but please do read this back once the crisis is over and get the GP some extra training. That's what I did with a couple of ours.

Lady I totally agree that not many people get the problem. I've been moaning about my DS2's reflux and sleep apnoea now for so long that I feel even some of my good friends try and avoid it coming up in conversation as there is just nothing they can say and they just think it's a bit of sick!!

Belthylou, the odd thing is that my son's regular GP is really excellent. No hanging around for weeks and weeks on the gaviscon, he is 7 weeks and has been through all the meds already, and when they didn't seem to be working he arranged a referral straight away. It's such a shame knowledge is so variable.

I know re. people getting sick of hearing about sick. I have one really good friend whose daughter has severe silent reflux, much worse I think than my son's, and she gets it of course, but not too many other people do.

We seem to be having some luck with maximum dosage of ranitidine at the moment - well, t hat is a relative term as DS still has to be walked around and around and if we didn't have the dummy or do that .....

Stopped the domperidone as it seemed to make things worse.

I even think my family think shut up about the subject. They never say anything of course but it takes up so much of my life its hard not to talk about it. None of my old school friends have any LO so I became a bit alienated when I had Ds1 but even the friends I have with babies dont really get it. One friend I work with had little girl few days before my Ds2. She's having to have tests due to increased head circumf and they think hydroceph so I try not to mention it to her altho she asked the other day and said, so it's just reflux then? Cant really say much more to her with what's goin on with her dd. Anyway. Saw hv yest who had no other ideas apart from trying cooked carrot sticks for him to eat but they didnt work. So Ive been ringing the clinic all week to ask for advice from paed. Consultant herself called back and after being asked to cut out diary for 48hrs and to stop weaning, I see her monday. Result. :) Im taking my mum who worked as play specialist on the ward with her when she was junior doc...hope she remembers mum so she knows im an ok person! I get such confidence issues sometimes. Just keep fingers crossed please. Hope you all have a good weekend. Time to put up the tree x

It's so hard isn't it to get a balance between trying to get the needs of your baby met and coming across as a fussy mother? I shall be taking my DH to see the paediatrician this time so he can explain that he was the one who picked DS2 up the time he didn't start breathing on his own. Quite why I would be making this shit up I don't know!!

Lady I also have friends with more complex issues to deal with with whom I try not to talk too much about the simple reflux, but I feel that we are all dealing with tricky stuff and it's relative to our situation. It is totally hell and I think its impact is not fully understood.

DS2 seems to be teething again so I hope this doesn't mean we are housebound for the next week by the extreme vomiting that it created last time. Perhaps he should wait for my appointment with the paed on the 20th?!! DS1 had us up since 2:15a.m. with earache for the first time ever - I'm shagged!

Some positive news from us - DS has fallen asleep in his new mechanical swing. Twice. Admittedly, he needs to be swaddled and with a dummy in his mouth too but this is nothing short of a miracle as previously it required me to pace around the house for hours to get him off. Which was just exhausting.