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

[Dameshazaba]

Gosh so sorry to hear you are going through this. It sounds incredibly stressful. I'm afraid I really have no idea what could be the cause. Hopefully someone will be along soon who knows more than me.

[Dameshazaba]

Just wanted to hand hold if you know what I mean. Perhaps calling post Natal midwife team/ health visitor/ 111?

[Dameshazaba]

Or contacting consultant leading on his care?

[BarbarianMum]

Could be colic I guess (as in inexplicable) but I would go down the reflux route as a starting point.

[Cake0rdeath]

I've been where you are and its horrific.

DS has severe reflux until 13 months. It got better with medication but there have been a lot of long term effects which we are dealing with as part of the aftermath.
Things that worked for us;

1. Consulrant paediatrician. It took 11 visits to my GP to get the referral as, because DS was gaining weight (albeit slowly) I was labelled a neurotic mother. If I heard the phrase "it's just colic" one more time, I was likely to kill.
   
2. ranitidine. It's an antacid and once DS started on this at 10 weeks, he was a different baby instantly. It does lose effectiveness the longer they're on it. This can be prescribed by your GP and will do absolutely no harm to baby of it isn't reflux.
   
3. omeprazole. DS was on an adults dose of this from 20 weeks until he was one. This was the only thing that allowed him any comfort from his reflux.
   
4. tummy sleeping. Given your DCs medical circumstances, you may feel wary about this but we used it for naps during the day. It meant I basically watched him for his entire nap out of paranoia, but I was so strung out by that point I wouldn't have slept anyway.
   
   Things that didn't work for us:
   
5. gaviscon. It just made him super constipated.
   
6. the colic drops/orange flavoured drops to make winding easier. They are really acidic so not great for a baby with reflux
   
   DS started bottle refusing at 20 weeks because he had learned to associate his bottle with pain. It is likely you will need to wean early, especially if feeding is becoming a struggle now.
   
   The anti-allergy milks are vile. Has CMI been diagnosed officially? I'd be pulling off feeds if that's what I was getting. if it has been, then persevere.
   
   As for dealing with the wind and general discomfort, it's so hard. My DS was miserable all the time until he could move about. The lack of sleep and stress was horrific. You have to look after yourself-call in babysitting favours, ask friends. People want to help ease the burden and you'll benefit from a few hours of uninterrupted sleep (although even when someone has DS I didn't sleep anyway-too wound up)
   
   Badger your GP for the referral.
   Good luck

[icouldjusteatacroissant]

I'd be tempted to play the neurotic mother and take him to A & E, just to bypass the red tape and get to the bottom of it quickly.

He can't carry on like that poor little soul, and you must be worried sick

[StarlingMurmuration]

DS was very similar but improved a lot on neocate, with gaviscon and ranitidine prescribed too. We decided not to bother with the rotovirus vaccination because of his tummy trouble, though. Have you been referred to a dietician? There are other formulas apart from neocate which might be worth trying.

If it's any consolation, he massively improved by the time he was six months old, and now at nearly 12 months is off his gaviscon and ranitidine with no sign of the problems returning.

[TaliZorah]

Dame went to out of hours last week they told me to go to my regular GP who didn't help much

cake sorry to hear you had this too. I asked about ranitidine but was told only a paediatrician can prescribe it, they did refer me but they referred me to a hospital that I can't get to (I'm a single parent and don't have my own car). I've asked for them to transfer it to the hospital I can get to and I haven't heard back.

Didn't know about omeprazole, or colic drops. I've been giving him infacol because the doctors keep telling me to...I'll stop this now!

It hasn't been officially diagnosed I've just been told it's likely as he has a family history of allergies

[StarlingMurmuration]

We put him on his tummy to sleep too, and it made an enormous difference. Now we put him down on his back and he immediately flips over onto his tummy or his side to sleep.

[TaliZorah]

icould we ended up in out of hours but they said he was fine and to go back to the GP to get referrals done. I'm still waiting for it to come through as they referred me to the wrong hospital

Starling yes I have that's who gave me neocate. He's only been on it a week so there's still time but I'm surprised it's gotten worse.

Glad your son got better it's horrible seeing them like this

[StarlingMurmuration]

I'm so sorry, it was truly horrible. DS had horrible constipation when he was on Aptimil anti reflux formula, and every morning at 4am, he would scream and scream while we massaged his tummy and cycled his legs until he did a poo. He also pulled off the teat and screamed through every feed which was so traumatic and damaging to the bonding process. I ended up with terrible PND and I'm sure that his feeding issues were a huge part of it. Is there any chance you could record him feeding to show the paediatrician?

[StarlingMurmuration]

We took him to out of hours and that's where we managed to get our first ranitidine prescription, we were incredibly lucky because the doctor we saw had a baby with reflux herself, so she believed us. All I can say is push push push for another paediatrician appointment.

There's a CMPA Facebook group as well which might be helpful.

[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.

[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.

[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.

[BumWad]

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

[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!!

[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.

[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.

[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.

[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.

[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.

[GiddyOnZackHunt]

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

[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...

[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%