Reflux/Milk/Gaviscon - A few questions

[Squeakz]

we got readmitted to hosp with it at its peak and they said 2 hourly feed but by the time he had stpped screaming and was asleep it was time for the next feed so im not sure who they were trying to kid. ill write our full story for hope it helps. some of the time scales may out etc as its been rough but ... Background info....my younger brother had CMPA and has eczema ashtma and hayfever (a aclassic case) and DS1 has all of the above as well but not to the severity bro was (he was registered disabled because of the asthma anyway....

G was born prem and spent 10 days in NICU. he vomited A LOT and would come out of his NG tube and his mouth. At that point he was on breast milk and some formula (my milk had a lot of catching up to do with a surprse birth). He was also VERY gassy. All the nurses commented on the gas and vomit and i KNEW he was the same as DS1 at least in the CMPA aspect. I told them but they said NO, not possible.

He came home which is basically when HELL started. He screamed and screamed and screamed. By this point he was FF because my supply hadnt caught up and so was pumping and because he ws prem the concern was maintaing his weight over much else. So in between pumping/feeding/playing with DS1/feeding him/pumping/ etc i decided to do FF.

Life became worse....the vomiting the screaming 16/17 hrs EVERY day SOLIDLY with the vomiting and i had DS1 and no family so a billion times worse.

approx 4 weeks old i took him to the g and said he has reflux (i knew that AT LEAST) i want gaviscon. they said no its colic so wait it out for 2 weeks ....i said why would i wait it out and come back in 2 weeks when gaviscon isnt detrimental to health and if theres an improvement then we havent made him suffer for 2 weeks.

after a couple of weeks there wasnt a marked difference so i told them i wanted something else. They gave me ranitidine. again helped but i knew that there was something else so went back to gp......

He gave me wysoy and domperidone. Things got worse. substantially. the vomiting stopped immediately with the domp but the screaming went up to a whiole new level. we did research and they say that dom contains lactose so we stopped just in case. Even after stopping it was hell.....the wysoy DID NOT HELP. My hv came round and said we NEEDED to stop wysoy as as far as modern practioners are concerned giving soy to a child under the age of 6 months is malpractise and that especially to a boy....she said even though the theories arent 100% proven as far as people are concerned its NOT worth the risk.

So i went back and BEGGED for nutramigen....(which is what DS! was on and worked instantly) to which i got no (by this point i had situational PND and was on tabs) and got told my PND was causing his probs by the SAME dr who agreed he had problems but basically nutram was toooooo expensive. i refused to leave his room until i had a referral and a prescrip. got what i wanted and then they refused to put it on repeat because 'they dont buy every other womans formukla' call to the PCT later complaining they were puttng finances before a babies health and i got a call saying we had it on prescrip until a review from a paed,

Get to the paed who STRAIGHT away says reflus (greg was 14 weeks actua; age so developmentally 9 weeks) and we were told he had to have omeprazole and ranitidine and gaviscon and he had CMPA and neocate. Got the neocate and it took 2 weeks to kick in. by which point greg was readmitted for 48 hours and threatened with an NG tube because the continual feeding through the tube (we would have had a canister) would have meant that his stomach never emptied produced acid etcan dthe reflux would have subsuded. I als o had a paed tell me that we didnt know he was in pain. needles to say i politely told him to f*** off. we ;eft on 2 hourly feeds which we noway could maintain so back to square one except the took ranitidine off hime and the omep.

My this point hes calming down a little but we all knew he would when the neocate kicked in hence why we know he has CMPA nad reflux (the cows milk aggraveated the underlying reflux etc......)

My childminder recommended teething neclaces.......she knew ones and highly ecommended them but they are hazelwood not amber (although the shop offers combi ones) and that she had done research and that the aboriginies used hazelwood to control acid levels in the body. I was desperate and within 24 hours of the bloody thing being put on he stopped screaming. He STILL vomits and refluxes but he doesnt scream and consequently doesnt care........it MAY have been coincidence for his gae or whatever else but the bloody thing hasnt come off....

We a;so started weaning at 17 weks actual age so developmentally 12 weeks.......

So the necklace went on at an actual ace of 16 weeksAND we started weaning (well essentially giving a little baby rice in a spoon with a bottle to help thicken.........

It may be coincidensce but i am NOT taking it off..........and now hes 7 months old vomits all the time but is HAPPY!

www.tearlessteaching.com

Essentially my point is...DO NOT GIVE UP! FIGHT FIGHT FIGHT....
theres stuff that iv missed out but the essentials are there. pm if you want xx

 

[Squeakz]

sorry its long x

 

[MrsV]

God Squeakz, what an ordeal! Well done for pushing and getting through it. You're an inspiration. Thanks for sharing.

Domperidone made Ada bad too. I didn't know it contained lactose - that's very interesting. Did you worry about putting a necklace on a baby? Or did you put it on the ankle? I would worry about Ada strangling herself with all the thrashing she does... xx

 

[BellaRiven]

My boy had Pyloric stenosis so I can kind of relate to you in respects to the sick, OMG the sick it covered everything the walls, me, hubby even the dog at one pint when she didn't move quick enough and the screaming.

I tried BF for 3 weeks until he was admitted, I was expressing every hour to cope with it as he wouldn't latch he would just scream and scream, when I went to the doctors the first time he said it was reflux so he prescribed Gaviscon and that didn't work so I went back and he said to carry on I mentioned pyloric stenosis and the doctor felt his stomach (the have a olive sized lump at the top of their intestine) but couldn't feel anything so sent us away, but I knew something wasn't right, the BF lady had mentioned Pyloric Stenosis when I was still in hospital but said it was very rare that that would be the case so not to worry.

At 2 weeks and 6 days the HV came round and R had gone from 7lb 4 - 6lb exactly she called the doctor and we got a referral straight to the hospital, the doctors there had me feed R again and he promptly threw up all over him projectiled right across the room (that's my boy )

He was admitted with suspected Pyloric Stenosis he was 3 weeks exactly, as they couldn;t do the operation at the hospital we were in we got moved to Bristol and at exactly 4 weeks old he had an operation to release the muscle, it was the most stressful time I have ever had with my baby and the most heartbreaking.

I guess what I am trying to say is please please please do not push this condition aside, it can be checked with a quick ultrasound, I had to push and push and push to get to that final point but he is so much better now.

much love to you all xxxxx

 

[Squeakz]

No I just put it on. Its not dangly so cant catch on anything and not long enough to fold underneath himself. Just had to get on with. Heard every excuse going lol but I just think when you know you know as bella said xx

 

[Sarah3]

Thank you for the info Squeaks, sounds like you've been through the mill with all this! Thank you for sharing.

MrsV - i thought something similar regarding feeding recently, my thoughts were that despite little and often were supposed to be better, Lo's 'best' times are at night and early morning (between 11pm and 9am) and thats when his feeds are more spaced out - probably a coincidence but you cling onto anything when youre in a rough patch, and i read an article which i wish i could remember where or what it was that said something about acid production when theres more of a gap inbetween feeds....cant remember but it persuaded me to give it a shot.

Didnt work for us, LO gets too upset, and that makes everything worse, to the point that even when he's calmed down his reflux is worse for the rest of the day - but i think you could try it, it wont take long before you know if its something your LO can deal with. And you never know, it might help

I think my LO started to get worse around the same age as your LO did, except ours wasnt a slow decline, it went from awful to 'Oh my god' overnight, im hoping this is the peak that everyone talks about and it will get a little better after this (please please please)

An update on us; Doc had us come off the Ranitidine for a couple of days to see if we still needed it - can Ranitidine make things worse? When LO first started on it he seemed like it gave him bad tummy ache, i asked a couple of doctors but they said it will be a coincidence, and then after a couple of weeks it stopped. But LO would seem good when he first woke up (im sure everyone reading this knows i mean good in its relative form) then an hour after taking it he would get cranky or upset. I tried missing his afternoon dose to see if i was imagining it, and LO was better, then took evening dose and went back to cranky and upset a little while after. Doctor said i was imagining it and to not miss a dose because it wouldnt work etc.
Then another couple of weeks later, and the first day he didnt have the ranitidine there was no high pitched screech when i put him on my knee - still the usual inbetween the off and on the bottle, but progress is progress. Also seems happier. But of course i dont know if this has anything to do with the ranitidine or its just coincidence and he's having a couple of very good days? Time will tell i suppose. Just wondering if anyone has heard of this happening before?

Also i feel awful because my LO has managed to scratch his face with his nails while he was refluxing and rubbing his eyes, he doesnt seem bothered but he's got a cut on his cheek now I dont know how he manages it, im filing his nails every other day...the reason i feel so bad is cos i didnt do them last night because he seems to be going through sleep regression, and after he finally falls asleep, the slightest thing wakes him and then he wont sleep again for at least an hour...so i left them...and now i feel like a terrible mother

Also while i think about it, does anyone else find the heat makes their LO's reflux worse? Im thinking the heat stresses my LO out which causes the reflux to be worse rather than affecting it directly...?

 

[Sarah3]

Also thank you BellaRiven - our doctor always feels LO's stomach (it always seems like the doctor does it really hard, but it never bothers LO so it cant be) at our appointments, always just says hes checking 'its not something else', im guessing Pyloric stenosis could be the something else then...

Doc never said what it was he was looking for and i didnt ask...my brain really doesnt work as well as it used to

 

[Scattyash]

Ive re-written this post several times now, trying to explain why i have these questions and whatnot, but when i do, the post is just tooooo long, so i'll just cut to the chase
We have an appointment with our 'proper' GP in a few days, and he will be referring us to a paediatrician, but i would love to know your thoughts on a few things, since we saw a different doctor recently and they didn't exactly fill me with confidence

Our LO has both silent and 'normal' reflux, which started around 4 weeks old. He is currently on Infant Gaviscon and Ranitidine.

Firstly can anyone point me in the direction of a list of dosage amounts for the ranitidine please? Ive looked about, but cant find it anywhere. When GP prescribed it he said LO was on minimum dose for his weight so it didn't matter if we went a little higher, but i cant remember what he said the max dose was, and don't want to give LO more til i know its the proper amount. Asked other GP but they looked at the info and for some reason they couldn't work it out (???)

Also GP said we should give extra Gaviscon, said it was fine to put 2 sachets into 140ml as long as we didnt go past 12 single sachets a day
LO is currently on one single sachet in 140ml, and he usually only takes 70ml at a sitting (very occasionally has been known to take 130ml so its always offered just incase). I dont feel comfortable putting 2 sachets into that little milk when the box says otherwise, so im not, but what i was wondering is this;

Ive read about people suggesting to give the extra milk so you can put the two sachets in, but in my mind there doesnt seem to be a point? It seems to be double the Gaviscon, but double the milk, so surely the ratio will be the same and wont make any difference? Or am i not thinking about this properly? I dont mind wasting the extra milk if it infact will help LO feel better.
Anyone else been told to put 2 sachets into less than the stated amount of milk?

GP said LO was too young to be trying hypoallergenic milk? Lots of allergies and dairy intolerance in the family so thought it was worth a try, just to rule it out before LO is put on yet more meds? Incase we're treating the symptoms rather than the problem if you see what i mean. He doesnt seem to have any allergy symptoms so was thinking intolerance if anything. Do you think its worth asking our normal GP about or am i clutching at straws here?

Hmmm...this is quite a long post anyway, eek, sorry...if you're still reading and havent fallen asleep, thank you in advance

My daughter takes gavisvon in every bottle, just one sachet and rainadine 3 times a day 0.4ml
I was advised only 1 sachet of gavisvon in a bottle if giving rainadine along side it,
But I'm guessing that different doctors may say different

 

[Tanya4beauty]

I've been through all this, it's hard and makes those first few precious weeks/ months miserable. I too gave up breastfeeding as it was a long and constant screaming match. Mia was really sick to the point I had to take towels everywhere and extra milk as she always wanted refeeding. She dropped two lines I her book before anyone took me seriously but in the end we went to a and e to get her diagnosed. It was the quickest route for us. I can only sympathise with your frustrations...... I too got the 'oh she's just a sticky baby' all the time. Sticky babies don't scream, refuse feeds and drop weight!!!!! We tried gaviscon which didn't work and actually made her sicker. We had domperidone and ranitidine but they didn't really stop the sick. It seemed to stop the pain and screaming tho. In the end we moved onto aptamil ready made formula and the sick almost stopped over night. I don't know if it was just a coincidence but we tried to put her back on powdered about 2-3 months later and she went back to being uncomfortable so we stuck with the ready made and didn't look back. We even managed to get her off her meds at 4 months old. The reflux got bad again during teething for the first top teeth but happily it seems to have settled again now.
I really feel for you, reflux stopped me enjoying my much wanted baby and I ended up with pnd partly due to that and having to work from her being 4 weeks old. What I'm trying to say is try to look after yourself too as it is really hard. But take it from someone who is nearly a year on 'it does get better'!!!!!! Xxx

 

[Tanya4beauty]

Oh I forgot to mention we tried nutramigen and it didn't work for us. I just ended up covered in potato water smelling sick

 

[MrsV]

Thanks Tanya. Does help to know we'll get there in the end. x

How you getting on Sarah? I hadn't connected the heat with Ada's dip, but could well coincide. I use Nipper Clippers on Ada's nails. Have you seen them? They have a little window so you can see what you're cutting. Genius.

Got another Bowen session in a minute. Not had a great week, but today so far has been ok... x

 

[Sarah3]

We've had a really good few days, theres been no screaming at feeding time and seemingly he's been refluxing a lot less... he's been sticking his tongue out more (but not sure yet if he's pushing his tongue out because of reflux or because its this weeks 'thing') and lip smacking, and a lot more dribble...but he seems much happier and we've had a few giggles today. This is the best he's been since 5 weeks old...i hope we're starting to come out of the other end of this, but its early days, and i know it could all turn around again in the blink of an eye.

Except he gets bad when we put him in his new cot to play, he seemed happy enough, playing with his toy, but its like as soon as we put him in a cot of any kind, his reflux gets really bad, he's spitting up every few minutes etc. He's fine a few minutes after taking him out. His cot is more tilted than when he sleeps on us, and we've tried lessening the tilt etc, but he's just not having it. I dont get it, and OH isnt too keen on the idea, but, im pondering babyproofing the bedroom completely and getting a flat mattress for LO to sleep on, and maybe putting our mattress on the floor so we're on the same level (ish) and theres no bars or anything inbetween us. With him having slept on us since he was 5 weeks old it sort of seems like a more natural progression to me, but its something i need to look into more.

How did the Bowen session go?

 

[MrsV]

Glad you're having a good spell too. We had Ada's Moses basket tilted, but when I put her in her cotbed a couple of weeks ago (1st in the basket, then without) I was worried that it was flat. I tried it though and she was fine. She's an unusual refluxer in the sense that she's always been ok on her back though.

Second Bowen session was a lot calmer. Therapist saw a real difference in her. She's feeding much better the last couple of days... Hard to know if that's due to the Bowen therapy or just age/meds and milk finally kicking in... But on the results thus far, I would say it's worth a try x