Posting here for traffic - DS allergy/reflux help

[TaliZorah]

DS is 10 weeks old. He was born blue (possible medical negligence issue here which I'm exploring) and in NICU on a ventilator with suspected sepsis. He recovered and was fine. Very "colicky" bringing knees up, windy, screaming, going red and constipated and screaming with farting. Found out he had a milk allergy and we were given Alimentum. We were also given baby gaviscon as they suspect reflux. He improved massively but it wasn't completely gone. He was so much calmer, slept 6 hours a night, and was pain free apart from a few occasions.

After his 8 week jabs ALL the symptoms came back. Inconsolable screaming, screaming farts, refusing feeds, watering eyes, vomiting, funny poos, and he seems generally upset. I thought it was the rotavirus jab but they said he might still be reacting to the Alimentum. He's now on neocate and it's even worse! He is crying in the middle of feeds, pulling off the bottle, has excessive wind, won't finish a feed, is waking himself up with wind, is doing a piercing scream...

I have no idea where to go from here. What could be causing this? Adverse vaccine reaction? Reflux that needs ranitidine? IBS, not sure if babies can get that maybe

He's been checked for tongue tie, it's not that. Other than his allergy and possible mild neurological damage due to the birth DS has no known conditions.

I'm literally feeling shit. I'm dreading feeds and feel like a crap parent because I can't console DS and don't know what to do. Advice please

[TaliZorah]

zombiemeow they said he was over fed the first time it happened he wasn't at all.

Yes he's bottle fed, he used to scream at my boobs and cut me somehow. No idea why I thought it was a tongue tie but it's not. He's already on fast flow teats because he gets frustrated with slow ones.

Thanks for all the advice everyone

[spritefairy]

We had the exact same issue. The screaming, refusing to eat, sickness etc. Took 5 months to sort and was only dealt with as we demanded to be sent to hospital. He was diagnosed with cows milk protein allergy and was given neutramigen puramino, ranitidine and Gaviscon. Within 48 hours he changed. Now at 8 months he is a joy to be around

[3phase]

Oh gosh yes, I forgot about that bishbashbosh

That's exactly what we used to do - wait until she was asleep! She would feed in her sleep for some reason!

Great tip.

[zombiemeow]

Sounds like your going through a tough time

Ds is cmpa. He was put on gaviscon for reflux but this just made him very constipated and caused more pain. My gp surgery were absolutely useless too, I kept taking him in and was repeatedly told 'it's just colic/ you just have an unhappy baby'. He then started pooing bits of blood and I was told 'he's just straining too much'. I then took him to a&e and was told 'your over feeding' I took him back the next day when he started pooing pure blood and he was diagnosed.

Are you bottle feeding? I found ds was like yours, not finishing bottles, screaming through etc and I put him on the next size teats which helped slightly.

Are you under a dietitian?

Sorry if you have answered that already. Am off to read the full post now

[Bishboshbash]

When my DS had a feeding aversion I used to syringe feed him or feed him lying completely flat(I have no idea why that helped?!) but then I discovered I could feed him if I rocked him almost to sleep and then quickly put the bottle in he would drink the whole lot! I did that until he got Omeprazole at 11 months and then all of a sudden he loved his bottle again.

[3phase]

I had similar OP. Two out of my three babies had reflux. First one puked everywhere until he was mostly upright and walking, around 15 months.
Second baby was fine. Third had silent reflux and was also diagnosed with lactose intolerance. I saw a cranio-osteopath with my third. It was her that suggested lactose-free formula after DD started refusing all feeds - screaming at the sight of a bottle or boob.

Drugs helped but not Gaviscon. I think the cranial-osteopathy helped. Neonate helped too but it is revolting stuff. We progressed onto Aptimel Pepti which is a bit better but not as broken down. I tried unsuccessfully to wean early. She wouldn't let me spoon feed her so getting solids down her was tricky until she was able to feed herself. We had a few awful months when feeding her anything was very difficult and she barely gained weight. I think she associated being fed with pain.

She grew out of it, as did my son. But honestly not until they were mostly upright.

We bought a Sleepyhead thing - she seemed to take comfort from being 'surrounded'.

You will get through it. If your partner / Mum / friends can take him off you for a while, grab the chance.

Good luck

[GiddyOnZackHunt]

You've got a lot of good advice here. I posted briefly earlier but to expand, DS was a changed child on the ranitidine. Gaviscon gave him constipation and he was sick more from the straining to poo. On ranitidine he was still sick but he was a happy chucker. Didn't hurt and he didn't mind. He was sorted by about 13 months and is fine now.
We also bought a breathing monitor and let him sleep on his front which helped a lot. Our HV and GP were OK with that approach.

[Piratepete1]

We also thickened his milk with carobel by cow and gate which you can get over the counter. Stops the milk coming back up so easily

[Piratepete1]

We've been there too. It really is hell on earth. We ended up in A&E for the 3rd night on the trot after DS had projectile vomited every bottle. I was a sobbing, hysterical mess. They admitted DS for 3 days while they got him sorted out. He was on neocate, ranitidine and Omeprozole which apparently is the golden formula for reflux. DS improved no end and, although he was never really a comfortable baby, I no longer had thoughts of hurling him out the window. I was told to wean at 4 months and we never looked back. He still won't touch milk.

[PolShelby]

DD has reflux too but she is now 6 months old and it has improved so much! I know this probably won't make you feel better now because I remember how crap I felt back then being covered in sick with a miserable baby, but there is light at the end of the tunnel. I found dentinox colic drops worked really well for the wind (infacol was useless) and keeping her upright as much as possible. She also sleeps on her side or tummy and that makes a big difference too.

Hope it gets better for you and DS soon.

[TaliZorah]

cake I have had food issues since childhood because I had severe sickness from age 1 onwards which made me associate eating with vomiting. I'm very keen for this not to happen to DS.

Thank you for all the advice

[WhyCantIuseTheNameIWant]

Has your poor ds been checked for a tongue tie?

My dd had one so bad, she really struggled to feed until it was cut. Awful wind and cramps.

It might be slower and messier, but if he refuses a bottle, can you spoon feed him?

Good luck for you and him.

[Cake0rdeath]

Then once you get to the consultant, ask for omeprazole as a back up in case the ranitidine stops working. Having the prescription in hand is comforting, even if you never get it filled.

If you don't feel you can manage to be super tough (I was a zombie for the first 20 weeks) then bring someone with you who will communicate your needs. Friend/family member/ anyone who can speak to the GP if you feel you're not getting your point across. Exhaustion stops you functioning and you need to be functioning at 100%

[Cake0rdeath]

The bottle refusing is the worse. They're hungry but refuse point blank to eat and you have to sit back and watch them scream through pain and hunger.

Hang in there OP. You need to get tough with your GP and go in telling them what you want. DS is almost 2 and has real trouble with his food because he associates eating with pain. It's got so much better in the last 2-3 months but could have been avoided entirely had my GP given two shits.

It's not a tactic I'd normally recommend, but can you get to the GP every morning? Hound them into submission. Ask for ranitidine (and mention that you've done research and that it seems to be the least drastic option) and if they fob you off tell them that you're happy to wait in the waiting room until they call the paediatrician. Let's see how quickly they move when your DC is screaming the place down...

[GiddyOnZackHunt]

Ranitidine sorted ds's pain out and our GP prescribed it.

[Bishboshbash]

Oh yes sorry I'm in Scotland so get it free on prescription but yes you can just buy Carobel from the pharmacy or Amazon sell it too.

[stresshead84]

We've been here too, horrendous reflux for months on end. I know how awful it is. It's SO hard at the time, but it will improve. I know that doesn't help you with the here and now. At times I wanted to scream when people told me it would pass.

I second a lot of advice already given on here. Tummy sleeping although not usually recommended really helped my son settle, it also helped me relax (enough to grab a bit of sleep when he eventually stopped screaming) and know my little one was less likely to choke on his on vomit! Also try raising the head end of the cot.

Ranitidine and infant gaviscon saved my sanity and once we got the doses right stopped the constant screaming. It took me numerous visits to the GP to finally find one who actually listened to me and prescribed it. Trust your instinct, keep persevering, sit in the GP surgery as many hours as it takes to get someone to understand the nightmare you are enduring and the pain your poor baby is in.

My son had the first dose of rotavirus and spent the best part of the next week constantly projectile vomiting. On discussion with the practice nurse, we jointly decided that the negative effect of rotavirus on my son (and my sanity!) at the time totally outweighed the benefit of giving him a second dose,so he didn't have it. Of course, that was a very personal decision and not one I really wanted to take but given the circumstances and even with hindsight was the right decision for him.

Is there anyone who can look after baby and give you a break? I remember just feeling totally overwhelmed (my older son's colic was not a patch on the reflux) and feeling like I just needed some space to escape the constant screaming. Don't be afraid to ask. I wish I had asked for more support looking back and not kept so much to myself.

Look after yourself, you will get through it.

[Lalala82]

You poor thing, reflux is horrible. We are in the midst of it too but ranitidine really did help (and agree with above- our gp would have prescribed it but our consultant got there first). The gp also said that gaviscon can make it worse because the baby gets constipated which makes them strain and forces more acid up thus more pain etc. omeprazole is having some effect for us now on our ds. Keep pushing for referral and also as above carobel can thicken feeds- doesn't need prescription you can buy if you request at pharmacy, ours had to order it.

[Bishboshbash]

I would definitely push for something stronger than Gaviscon. Omeprazole is the business when it comes to reflux, DS was like a different baby after we got that.
I vaguely remember DS being more unsettled initially on Neocate so persevere, DS was on it from 16 weeks until 2 and he loved it(it does taste disgusting though!) we also used carobel which thickens the milk without the constipating effect of Gaviscon. You can get that on prescription.

[dunkedbiscuits]

Oh and one Gp suggested sedation to help with sleeping as that's what they used to do in the wards in the 60's.

[dunkedbiscuits]

Been there, got the t-shirt. DS was 6wks prem was in nicu with breathing probs, sepsis and complications due to my gestational diabetes. From 6wks he had wicked reflux and lactose intolerance.
He was on Gaviscon, ranitidine and adult dose omeprazole and at one point domperidone instead of ranitidine.
He's now 17months and he's a lot better. But that's only happened in the last few months. He's a very picky eater and sometimes won't eat at all.
I used to say that I wish I had a bottle feed where it wasn't a wrestling match. The medicine helped but not totally. I almost punched one doc when they said oh he'll grown out of it.
He always thrived (because he used bottles to soothe his tummy, fed hourly, which then gave him reflux - a vicious cycle). But I had comments of he can't be lactose intolerant as he didn't have a rash. I proved that by trying lactose free formula.

It's not an easy road but you get there eventually. We're now not sure if he's refusing food due to tummy ache or being nearly 2!!

[BumWad]

My DS was poorly 2-3 weeks after the rotavirus vaccine so just be aware may still be that too

[Kim82]

We had a similar story to Cake. Horrendous reflux which gaviscon and ranitidine didn't touch. She was a different baby once on amino acid formula (nutramigen puramino, she reacted to nutramigen Lipl 1) and a high dose of omeprazole. She's still on an adult dose of omeprazole at 15 months as her symptoms come back when we try to reduce it.

We were prescribed ranitidine when we went to A&E with her. She wouldn't stop screaming, and had been doing so without sleeping for 12 hours(!). The paed was happy to prescribe it for her there and then as she was in so much pain. We were then referred to a paediatrician as an outpatient who eventually prescribed omeprazole when it was obvious the ranitidine wasn't working.

I hope you get your baby some help soon, it is soul destroying when the screaming just won't stop and it is all day, every day so you have my sympathy.

[TaliZorah]

Cake

I'm going to go and ask the GP for ranitidine again. Poor DS is so upset it's not fair.

I've asked for it to be moved now so I don't know what to do about it. My GPs surgery is awful (in the process of looking for a new one) but I'm going to go and insist I need the appointment. Re transport there's a hospital I can actually get to my GP just stupidly assumed I wanted the other one.

[Cake0rdeath]

A&E won't do anything for you. I tried this when I was waiting for the referral to paediatrician and they were sympathetic but couldn't actually solve the problem. Unless baby isn't eating/losing weight/struggling with breath, then they will refer to back to GP.

Stop the infacol. We used this and thought it was great as it heloed DS burp but made his stomach worse. Others found it was brilliant; try stopping for a week to see if anything improves.

The GP is wrong. Ranitidine can be prescribed via GP. They need to call the hospital and speak with a paediatrician, but there's nothing stopping them giving it to you direct. After many visits and much crying, the GP finally conceded and gave it
To me without checking with the consultant. Like I said, it won't do any harm.

I understand that getting to/from places is difficult without transport but I'd look into alternative ways of getting to the hospital as it'll speed the whole process up. Bus/lift/taxi? Many hospitals have a dial a bus you can book. It's one appointment and you'll get
More done there than you will during 10 GP visits.