Reflux Help & Support Thread

[stardust599]

Sorry for not being about

We ended up admitted to hospital on tuesday night as Nim only took 11 oz of her neocate on Monday and Tuesday and was vomiting 3/4 of it back up and by 4pm tuesday was listless and pretty vacant.
I'd already spoken to her paed on monday as shes been taking less and less over the last few days and spilling more and more and I wanted to know if it was normal on neocate.

Her paed is worried about pyloric stenosis and the hospital ran urine and bloods but refused to scan as she gaining weight.
The registrar was patronising and tied to make out I have PND and am just struggling to cope with a spilly fussy baby.
She also poopoo'd the idea of Nim have allergies and said I should be BFing not feeding neocate and the neocate was probably the problem. Oh .... And slated my paediatrician!

Luckily my paed is FAB and ive spoken to him a couple of times yesterday and today and he's advised to keep a very close eye on madam and if she spills any more or takes any less to conatct I'm immediately and he'll arrange a scan ASAP.

Anyway, we were discharged Wednesday lunchtime and she's been better since, still only taking 1-3oz, but not spilling quite as much and is more bright and alert.

Ooh poor Nim, I hope she is okay.

That's the thing they thought Macy had, she is always constipated and I thought the reflux could be related. My paediatrician was great and wanted to do a scan but then we were referred to a consultant who's decided that she doesn't have it as she gained weight this week. They've just given me suppositories and lactulose instead. It didn't help that the DR I took her to today is the one that sees me for my PND and I think she just thought I'm a bit crazy! We're back at the paediatrician next week and I'm going to ask for a scan just incase as I still have lingering doubts.

Macy only ever takes 1-3oz every 3hours too but the other day she woke up feeling fantastic and took 4oz each time. Back downhill the past few days again though. She always manages to gain weight except 1 week :-S

Neocate has been fab for Macy, she's miles better than when BF (although we weren't told she might have allergies so I was eating all sorts). Every doctor I see wants to take her off it though but I'm not agreeing!

She's vomiting every feed the past couple of days but me and OH have had a diarhhoea stomach bug so maybe she has it too? She's also screaming 10hours a day so I can't get out as people stare at me like I need to sort my child out. Thank goodness she is better at night and I can get a bit of rest.

Macy's reflux has always been silent but I must admit she does projectile vomit more often now that she's on Neocate - it's so thin it just comes straight back up. Do you still use Gaviscon? There is another thickener called Carobel that you can buy over the counter (in UK).

I'm ordering "colic calm" gripe water. A friend of a friend has just recommended it to me for reflux so I'll let you know how we get on.
xx

 

[xnmd1]

jarrett was diagnosed with reflux at his appointment today. i had already suspected as much for a while now and it's been confirmed.
he seems alright with him self most of the time, but a couple days a week has crying spells on and off throughout the day.
he spits up every time he eats, and constantly between feeds, as well as in his sleep.
sometimes when he spits up it comes out his nose, and he gets so upset & he cries real tears and screams.
he also does this awful thing when he's drinking where he gasps and gags like his milk went down the wrong way .. he occassionally does it as well while sleeping, or shortly after a feed.

he's not being medicated but i've been told if his symptoms worsen to call in to his doctors office and they would write him up a perscription for baby zantac.

 

[Farie]

Stardust - def push for the scan my paediatrician still hasn't rulled it out for Nim totally, it doesn't always follow the normal symptoms, particularly in girls.
I'm not using gaviscon at the moment as I really dont want her to get constipated, I'm thinking of trying rice cereal a thats meant to thicken it well.

I hope Macy is ok and gives you a quieter weekend

Will update properly later, need to sleep now!

 

[Nessicle]

Hi girls wonder if you can give me some advice

I'm thinking Ava has silent reflux - we initially thought colic, HV said colic and we've tried everything from the bottles wth the vent tube in the middle to colief, infacol, gripe water and dentinox and while I do think she has a touch a of colic these remedies just dont seem to help much.

Symptoms:-

-at several feeds a day she fights the bottle even though she's hungry, arching back, kicking feet out, screaming all inbetwee trying to gulp
-not being able to lay on back for very long after some feeds in the day, starts crying and then sicks up (not huge amounts)
-fussiness
-short nap periods waking after 30 mins though she does well during the night
-stuffy snuffly nose in a morning
-only taking 2oz per feed then wanting to feed again shortly after but only taking an ounce
-sticking her tongue out all the time ad putting he fingers in her mouth even if shes just been fed
-sour milk breath

I did try comfort for a bit but she seemed to possett a bit more with this and it was watery cloudy sick as soon as she was laid down, but she didnt cry with it and seemed better, but I was worried about the sick so put her back on aptamil 1

 

[happyface82]

Hi Nessicle.

I am sorry to say but HV don't know much!!! It does sound that your LO has got reflux. Now don't ask me why this is so obvious to us here and not to a HV!! They should have seen many cases like that!

Anyway I would try and get a doctor's appointment! Colic can be bad, and you can't do much to help it even if you try special bottles, gripe water etc. but it is not something that affects them specifically when eating!

I hope your GP listens to you and prescribes you smt! Let us know how you get on!

xxx

 

[KellyC75]

Yes, wss ^

Good luck with the Doctor....Hopefully you can get Avas pains under control soon & start enjoying time with her

 

[fluffyblue]

Hi girls, well I went to the docs and got stuff for..... COLIC ! Yes I knew 100% he wouldnt take my word for it. He has given me Colocynthis which is a herbal cucumber water but because its so rare none of the chemists stock it so I have to wait 4 days for it to be delivered.

I had a long long chat with the midwife/nurse yesterday at our local urgent care centre and she has noted that in Ollies discharge notes from NICU it does say "during xray marked reflux noted" she has told me to push on this in further appointments as it will generally be ignored to to NICU not taking it any further. However the midwife also said that I am probably not doing Ollie any favours by switching between breast milk and formula, so I have to make a decision on one or the other, now as im not producing enough breastmilk to keep him fed I am unfortunately going to have to pack it in.

He seems alot calmer today and last night, apparently I have to persevere with the Infacol and then take this colocynthis when it comes. I havent to use Colief as apparently it can cause more hassle than calm.

I have to go back to the docs in a week but this will be a week Tuesday as thats when I get his medication. .

His wedge pillow also arrived today so I am going to try that tonight.

Just a question, I got told off for trying to many different types of formula, I started him on SMA Gold then switched to Cow and Gate Comfort, the HV said that the Aptamil Comfort was a little gentler on their stomachs - should I change again or just leave him on the C&G ??

 

[bathbabe]

Id leave him on cow and gate x

 

[Farie]

Nessicle -def pop to the Dr, sound like reflux to me.
Fluffyblue - that's complete bullshit, switching between formula and breast milk will have little or no impact on the reflux unless it's allergy related. If you want to continue BFing go for it! Bad HV for giving that advice also if you do feel strongly about BFing have you popped to the breastfeeding section and looked at boosting your supply? Only if that's of interest to you tho

Helen, so sorry to hear your little girlie is still struggling sound like she needs a higher dose. Nim can't cope on 10mg at the mo, she still needs 20mgxday.
Happyface, how are you getting on?
Kelly, is the Ranitadene working for your LO?

Hows everyones bubs doing?

 

[Nessicle]

Just a question, I got told off for trying to many different types of formula, I started him on SMA Gold then switched to Cow and Gate Comfort, the HV said that the Aptamil Comfort was a little gentler on their stomachs - should I change again or just leave him on the C&G ??

I have a box of Aptamil comfort and C&G comfort and the ingredients and amounts are exactly the same

 

[Nessicle]

thanks for the advice everyone! Why does it seem that they just want to fob you off with the same colic diagnosis every time!

Ava has been very fussy again tonight, since about 4pm she's taken 2oz here and there followed by another ounce a while later and wanting to feed constantly inbetween but just taking a few swallows then stopping but wanting more 30 mins later....so frustrating!

Has anyone had any improvement using comfort for silent reflux?

At baby clinic for weigh in on Monday, will they be able to prescribe gaviscon or something there or will i have to see the doc?

xx

 

[HelenFS]

Hi everyone,

My paediatrician won't let Freya go onto 20mg and says that really 10mg is high as she 'should' be on 6mg so 1mg per kg. I know that the BNF ranges for losec is between 700 micrograms to 3mg per kilo with a max of 20mg at this age! I really don't know what to do. Maybe I should push to see a paediatric gastroenterologist? I'm also going to need help with regards to weaning her and my HV said to get the referral into the NHS (currently seeing paed privately) so that I have support with this but to be honest by the time my referral goes through (at least 11 weeks) then I will have started weaning her already!
I'm finding the who thing exhausting! I know that I'm very lucky in that Freya takes her milk but it is still awful seeing her in pain and because I have a direct comparison with her twin brother I know how miserable it is making her.

Sorry for the me post. How is everyone else getting on?

Nessicle - comfort didn't work for us hun. You'll have to see your GP for gaviscon.

Xxx

 

[HelenFS]

Oh Farie vie just seen your post from the other day. Poor Nim. Sending you huge (((((hugs))))) sorry you had to go through that. Any update? Xxx

 

[Nessicle]

thanks hun

shes crying her eyes out at the moment cant settle her, she cries when she yawns and on her back poor thing nothing is settling her

 

[KellyC75]

thanks for the advice everyone! Why does it seem that they just want to fob you off with the same colic diagnosis every time!

Ava has been very fussy again tonight, since about 4pm she's taken 2oz here and there followed by another ounce a while later and wanting to feed constantly inbetween but just taking a few swallows then stopping but wanting more 30 mins later....so frustrating!

Has anyone had any improvement using comfort for silent reflux?

At baby clinic for weigh in on Monday, will they be able to prescribe gaviscon or something there or will i have to see the doc?

xx

Bless you & little Ava

Meadow has been really improved since starting on comfort & ranintidine...Although in hindsight, it may just be the ranintidine helping (as a week after going onto comfort I had to go to Dr's as she was getting worse)...Mmm, would be so much easier if she was still on aptimil 1st milk...as they have the ready made cartons

But....what to do? We are leaving for Australia in just over 2 weeks...Do I risk changing her back to 1st, to make the trip so much easier, or stick with the comfort?

 

[Nessicle]

try it Kelly before you go I would - then you will know if its the meds helping or the comfort too.

Oh btw the pharmacy sells infant gaviscon over the counter for about £4 so if you ran out and couldnt get to the docs you could buy it

well I've tried out my new Avent anti colic bottles today and shes taking more in her feeds so I'm glad she's finally taking more but she is sicking up more now - you think this is just because she's not used to drinking more than 2oz? she's much more contented tonight since taking mre feed so perhaps its not reflux....??

will have to see how she goes over the next few days I suppose!

 

[KellyC75]

Thanks Ness

Although I am a bit wary of changing her over so close to our trip...Just in case it 1/ upsets her tummy 2/ has a negative effect on her silent reflux

If I still had a month to go, I may have changed her, but its 2 weeks on Weds!

What do others think?

 

[MrsNovBaby]

Went to the consultant on Friday - upped both the ranitidine and the domperidone. Dr said to start weaning from 16 weeks - this scares me a little TBH as that is not even 2 weeks away. He is a lot better now that he cold has cleared up, even his eczema is not so bad (touch wood). Hope everyone is coping (I know that coping is sometimes the best we can ask for) xx

BTW did anyone else have a problem getting SMA staydown last week?

 

[bathbabe]

Went to the consultant on Friday - upped both the ranitidine and the domperidone. Dr said to start weaning from 16 weeks - this scares me a little TBH as that is not even 2 weeks away. He is a lot better now that he cold has cleared up, even his eczema is not so bad (touch wood). Hope everyone is coping (I know that coping is sometimes the best we can ask for) xx

BTW did anyone else have a problem getting SMA staydown last week?

Weaning might not actually help, it didnt with us. If your not ready to wean then dont x

 

[Farie]

Just a little update from me, Nim has been better, shes much more alert, still only taking 1-2oz, very occasionally 3oz. She's spilling quite a bit, just constant sick that flows out of her mouth for up to 30 mins after feeding. Its a lot worse if she takes more than about 2 oz.
The plus side is the Losec is working and shes not in pain while shes spilling, she still coughs and gags and hiccups but no back arching, ridged screaming.

Sleep wise we are only going a couple of hours over night (I think cos she takes so little) but at least shes gaining weight. I spoke to my m/w and she advised to just go with it until she takes more as trying to get any routine is pointless as she just not hitting the usual 9 week targets for feeding/sleeping etc. We are using 'cues' such as bath before bed to help get her into a rhythm, but no fixed points as yet.

She is beginning to smile which is amazing, and I think she will slowly start to catch up with the other milestones such as tummy time, playing, reaching, holding etc. She's beginning to be able to follow DH or I with her eyes when we move away too.

How are you all?

Helen, so sorry about your Dr, I'd get a 2nd opinion, Nim is 5kg and on 20mg, they say no more than 2mg per kilo, but it's a fluid rule
Stardust, how's Macy? did they scan for you?
Ness, try gripe water to sooth her throat