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.

Hi hellitops, really sorry to hear you've been having such a rough time! As least with the tube you won't need to worry about his milk intake and hopefully once his birth mark is healed you won't need to use the tube.

I would definitely recommend "The No-Cry Sleeping Solution" book, I'm not a fan of the Cry It Out method although I appreciate that I works great for many. The book describes gentle techniques for teaching babies self-soothe and go to sleep. It worked really well for us when dd was only 4 or 5 weeks old and learned to fall asleep on her own after me following the technique for one night where before I and DH had to rock her to sleep for 15-20 minutes. Unfortunately we are back at rocking/nursing to sleep stage but when we are ready for a change in dd's sleeping habits once she's better and doesn't need sleep feeding, I'll definitely be using this book again.

Hey ladies, sorry to hear things are rough with you helli.

I am struggling big time, my poor baby is on gaviscon but its made her constipated and so now is in pain there too. Going back to doc tomoz and asking for something else. She is on me now awake and hasn't stopped crying from this afternoon, on and off she settles for about two mins and then I hear the acid coming up and she screams or she let's off wind and strains but nothing comes out and she screams. I've had no sleep, I have to take my 8 year old to summer dance school in morn which involves a 50 min bus journey with a screaming baby. Yes feeling abit sorry self too.
I don't know how to ease it for babes I want to help her, give her the right meds that isn't going to make her constipated too.

Sorry didn't mean to go on just need to vent.

daisy when DD had her first set of injections..her reflux definently got worse. We have the second set this afternoon so preparing myself for a difficult evening ahead! Interestingly enough she never vomits being a very silent refluxer but immediately after jabs - projectile vomited. Nurse giving jab said it was her reacting (by refluxing) to the pain.... Never vomited after calpol tho - she's had it twice now but doesnt seem to do anything for her.

mila meeting dietician next week so if we dont get anywhere - I will definently be buying the neocate myself to trial. Although might have a slight battle on my hands as GP wont prescrible anything without consultant approval (as DD is now under consultant care and GP says he is not a specialised paed) and scary lady made it pretty clear she didnt want me to have neocate! Although perhaps armed with evidence of an improved baby might help.

Does anyone else's LO do frantic face rubbing after feeds? DD has being doing this from birth to the point where she develops rashes on chin/lower cheek area as she rubbing it so hard against my shoulder. If I put her down then its grabbing anything she can get a hold of and rubbing it over her face/eyes. She's also recently starting arching right back during feeding (normally keep her fairly upright with back and neck straight) so now she's trying to get into an upside down U shape.... ?

Thanks nemo . I have to say, and sorry to be blunt, but the paed you've seen sounds crap. Neocate is for babies with severe cmpi. I can't believe she doesn't know that! It even says it quite explicitly on the front of the tin!!

birchy sorry to hear about your LO. I would offer your baby some cooled boiled water to get things moving. Usually worked for my DD. You could also add a little prune juice to the water. You may need something stronger than gaviscon like ranitidine to help with the acid. Good luck- as you will see for most of us the biggest battle is with our Gps! Come here anytime to vent
narmada wish I knew the answer to your query. Sorry as you've been such a great help to us all.

birchykel - insist on Ranitidine when you see your GP. It's the next step from Gaviscon and actually works really well for some babies and many never need to go up to a PPI (unfortunately my dd is not one of those and Ranitidine only worked for her for a short while so she was put on Omeprazole and now on Lansoprazole). Your GP can prescribe Ranitidine, don't take no for an answer if they try to fob you off, ask for at least a 3 weeks trial if the GP is reluctant, stress the level of pain your lo is in every day! Only because babies grow out of it, it doesn't mean we have to leave them in pain for months, it makes me so mad! They won't let animals suffer, why do they think it's acceptable with the babies??! It's horrible to have to watch your baby in so much pain and the acid might actually be causing damage to your dd's esophagus and you also don't want her to develop any feeding aversions.

NemoGirl - if you don't get anywhere with the dietician or your Paed, you've got other options such as seeing a different GP at your surgery, changing to a different surgery, requesting a second opinion (i.e. asking for a referral to a different consultant), going for 1 private appointment with a GI Paed which costs about £200-£250, they can then write to your GP with a treatment plan and ask the GP to follow it (that's what we did while waiting for the NHS appointment with a Paed, he then also followed the private GI's treatment plan,although we've now changed it but it was my decision). I hope you manage to sort it out and get some help for your dd.

I think the face rubbing maybe a sign of a cmpi. My dd used to rub her eyes/face like mad during and after feedings and get a rash on her forehead when I ate dairy and is now much better since I've cut it out.

Thanks Daisylulu and Milamum, I went back to the doc this morn. My god, they are useless, she looked through a med book to see side affects of the gaviscon and says that my LO shldnt have constipation from it (whatever another doc said it is a side affect) she was reluctant to give anything and so said she wants to call the hospital first to seek their advice and I had to come home and wait for her call. She just called (left a message on phone) saying i need to go pick up a prescription....no idea what she has given me yet so going to leave now to see what it is.
I am so worried I am going to be putting meds into her and make her poorly....well worse. I hope it doesnt last forever and this med helps. I will come back later to tell you what she has given me.

Thanks for the support ladies, I havent been much help to any of you I know but once ive sorted this out ill probably be more help.

x

birch gaviscon made my ds have bad constipation and I've read a thread where quite a few had the same issue. He also spent a lot of time rubbing his eyes, he didn't have a rash but his eyes went red. They don't seem to be as red at all now on aptimil pepti. I would try the milk if you can. Keep us posted. Fingers crossed!

Hi Milamum and Narmada it sounds like our night time is similar to yours. My little one used to feed 3 hourly and take 3oz, now he takes about 6oz at bedtime, struggles to keep it down and often does hourly wakings until about midnight. We figure it's a mix of reflux and habit. He usually self-settles during the night by rolling (if he's not hungry), but when he starts doing that we can hear his "silent" reflux start. We have to hold him upright for 15-20 minutes and give Gaviscon- that stops the reflux, but then he gets really annoyed that he's been woken and has trouble settling in our arms. He used just to go back to sleep once we uprighted him. He can sleep for longer in his pushchair but gets uncomfy after 2-3hrs.
Nemogirl Hope you do ok after the injections. The first set were the worst for us, the second weren't quite so bad.

DD has finally fell asleep after screaming like never before. All was well initially after vaccinations this morning but like last time.... went for her late pm nap and woke up shrieking. Taken 3 hours to finally calm her down but my nerves are shattered. .

No refluxing - just screams of real pain. Is this a normal reaction to the DTap vaccine? Very similar to what happened on her first set although she seemed fine after a few hours of crying/being very unsettled.

Not looking forward to tonight....

ahh, bless her, narmada, I hope she manages some sleep tonight! My DD was similar after her first vaccinations, fell asleep OK when we got home and then woke up a couple of hours later screaming in pain like we've never heard her do before. We actually took her to the out of hours doctor as her breathing was strange/different but by the time we saw the doctor, Calpol kicked in and she was fine, the breathing was due to so much crying/screaming! :( I'm sure you've given your dd Calpol, but if not, worth a try to take the edge off the pain?

The second and third lot DD was actually completely fine, just a little bit of crying after the second one and after the third one she cried for like a minute straight after the injections and was absolutely fine afterwards...go figure.

sorry, last message for NemoGirl, I'm clearly confused, sleep deprivation does that to you! :)

nemo j had screams last night after her 2nd jabs which lasted a long time. They sounded horrific honestly if you'd been outside the room you'd have thought someone was chopping her legs off! And we couldn't give calpol because of the earlier projectile vomiting episode. I'm pleased to report after finally settling at 8pm last night she slept thru fine and today had been much better albeit a little clingy. Fingers crossed your LO will be ok now.

Birchykel sorry for the delay in replying re non dairy, we've been away. It's a lot easier than expected - I do online shopping so I checked all of my regular purchases easily as they have an allergies section which says if they contain milk or soy.

I have been having rice milk on cereal - I actually prefer it and it has calcium added. Pure margarine is also great and you can use it to bake with or make apple crumble as I prefer.. Some pastries are fine, divine dark chocolate is dairy free but has soy but she seems to be ok when I have a few pieces - I also got organica a new non dairy, non soy one this week to try. For treats, mrs crimble do cakes, jordans do chocolate cereal, Dorset cereal do honey bars, Ms cupcake (google for them - they are gorgeous) are brill but they sell them near me - think they might deliver, bread is one to watch out for but m&s do white dairy free and soy free ones - you just have to check the labels.

Eating out, I tend to do steak / burgers without the buns quite a lot. It means my chip consumption has increased and of course a lot of salads are ok depending on the dressing. Of course I miss ice cream etc but it's a healthier diet overall for me and it's really not that bad. If it stops her being in even a bit of pain, it's completely worth it to me.

Oh yes and we are 3 weeks into non dairy (with blips), 2 weeks into ranitidine and 1 week into domperidone and it's like we have a different baby. She still wakes up with silent reflux and still comfort feeds and just threw half of her feed up all over me but she is much happier and contented.

We also just had a 5 hour stretch of sleep last night which has been unheard of. The only thing is that the reflux still wakes her up during her daytime naps as she doesn't go into a deep enough sleep to sleep through it.

bupaandbump that's great news have you thought of changing from ranitidine to a PPI like omeprezole? I found ranitidine worked well for my DD for a few weeks but eventually stopped working even tho dosage increased. For us (touch wood) the winning combination at the moment seems to be neocate (so same as your dairyfree bf), domperidone and omeprezole. The domperidone is the only thing which seems to stop her from puking though I'm hoping to wean her off it eventually when neocate has properly kicked in. She has only been on it for 5 days and apparently it takes two weeks for the milk proteins to leave the system.

bubandbump sorry for typos in your name bloody iPhone!

mila and daisy - thanks for the reassurances...DD is indeed better today and despite pre-bedtime drama actually slept ok too. We did manage to get Calpol down her mid-scream and I think it did help take the edge of the pain...

Although I didnt get much sleep - too busy sitting by the cot checking on her breathing every ten minutes....not a good idea reading SIDs/vaccine link info after your LO has had jabs..!

that is one horrifying blood curdling type screaming though.. daisy - chopping off of limbs is exactly how I would describe it!! We thought our neighbours might call 999...it was so awful! .

Bubandbump thank u for the tips. I'll be trying the foods u have suggested. I guess I just don't know what I'm looking for but once I give it ago I'm sure ill pick it up. My girl is now on the same meds as yours, only been on them for a day tho so not sure when we will see results. I am so pleased for u, must be lovely to see it works for ur littlen, and sleeping bettet at night is wonderful. I hope this will be the case for my girl. How old is ur girl? Mine is almost 6wks now.
Anyway thanks again for the advice, I might keep in touch if ok?

Nemogirl, hope all is ok now. Sounds awful, poor u. So horrible seeing ur child go thru the pain. Hope things have settled now. All my love

Ah I spoke too soon..hourly wakings tonight with bad reflux.

I have been looking at the spilled milk website and her ranitidine dosage seems v low as she is on 0.3mg 3x a day. Is this what they start on? She is 11 weeks and 5.5 kg. Also it's the sickness that seems to wake her up the most, most of it is silent but I have just had her laid tummy down on top of me and it really is quite a lot of milk coming up. Would an increase in the domperidone help?

birchykel good luck with the dairy free- of course you can keep in touch, just pm me.

Bubandbump - my DD was on 0.7ml of ranitidine and 1.5ml of domperidone at that weight and age (both 3 times a day).

Babyandbump - my dd was put on 0.3ml to 1ml 3x day when she was 6 weeks and weighed 5kg. Basically the GP said start off on 0.3ml and increase as you see fit to 1ml 3 x day, so we started her off on 0.5ml 3x day and went up gradually but very quickly to 0.85ml 3x day as lower doses kept stopping to work after 2-3 days on each increased dose. If I were you, I'd just increase the dose myself a little and see if it helps (I'm not advocating self-medicating your baby, that's just my personal opinion and what I would do. I think that GPs tend to prescribe very low doses that are often ineffective IMO). All the meds doses' formulas that are used by doctors can be found on BNF for Children website, you just need to create a free account to access the information.

I can sympathise about the night wakings. We have just had one of the worst nights ever where DD went down for the night at 8pm and was up several times every hour till 12am and then awake till 2am, finally going to sleep in DH's arms for 3 hours, I then took her into bed to feed at 5am and she then slept there till 7am (I had almost no sleep in that time as she kept fidgeting so I had to keep shh-ing to make sure she doesn't wake up!). :(

And another awful night.. Going to GP tomorrow for 2 week review and going to insist on gastro aped referral - she kept choking on the sick last night so much that I held her all nought while she slept.

It was all going so well..

Bahh autocorrect.. Paed and night!