At our breaking point with 8 week old DS and need help

[DaydreamBeIiever]

We have an 8 week old baby boy. He was fine when he was born, we could put him down for naps, he pooed regularly, seemed like a fairly content little thing, but since Christmas/New Year we’ve been having an absolute nightmare and nobody seems to want to help us.

He was diagnosed with reflux and I have tried all the home remedies- feed him sitting upright, hold him upright at least 20 mins after each feed, have crib tilted. It helps in as much as he no longer projectile vomits, but that’s about it. He was prescribed gaviscon which was a fucking disaster- it made him constipated, so we just swapped one thing that made him scream in pain for another. He’s not been the same since. He poos maybe once or twice a day, really wet poo, and when he does it comes shooting out with some force and almost always escapes his nappy. The rest of the time, he’s squirming and crying and clearly in a lot of discomfort. He’s now on 1.5ml Omeprazole suspension a day, which doesn’t appear to be having any effect. It’s hard to get a burp out of him and he never farts.

He’s EBF except for one bottle of expressed milk a day. He had tongue tie which was divided 4 weeks ago which improved things (ish) until recently- we’ve been referred back to the clinic though as it looks as though it may have re-tied (or whatever the term is).

Essentially, he is never just awake and content. If he’s awake, then his base level is fussing, squirming and uncomfortable/in pain. He cries so much- there have been nights where he’s barely drawn breath between screams until he falls asleep from sheer exhaustion. Not like colic crying- real agonised screams.

He has a tiny bit of eczema too so I’ve given up dairy in case it’s CMPA- it’s been 3 weeks and again, so far no change. We were giving him colief drops which may have been helping a tiny bit but it’s just so expensive- a £20 bottle only lasts a week.

He never lets us put him down. I can be holding him and he appears to be absolutely sparko, snoring and everything, and then I put him in his crib and he’s awake within a minute. The nights when he’ll sleep in his crib and just wake for feeds like a normal baby are few and far between. He’s perfectly happy to sleep on me or DH but we’re so tired we end up falling asleep holding him and that terrifies me because of the SIDS risk- more than once I’ve resorted to putting him in the sling and sleeping sitting up in the armchair. When he’s awake the longest he’s lasted in his bouncer or on the playmat is 10 or 15 minutes. Otherwise DH or I have to be holding him or I have him in the sling, but I worry that being in it for that amount of time is going to be bad for his hips.

On top of this we have a 2 year old DS who is currently on the (absurdly long) waiting list for SALT and an assessment for autism. He’s such a sweet little boy and I feel so awful that all this change and disturbance has been thrust upon him.

I just don’t know how much more we can take- we’re fucking exhausted and all these things I’m trying just aren’t making any difference. He’s putting on weight so health visitors/GPs don’t really seem to give a fuck - they just sympathise and tell me I’m doing all the right things. I feel like screaming. If I’m doing the right things then why is nothing fucking working?! Why is he still in pain all day long?

I don’t know what else to try and we can’t go on like this. He’s in pain constantly, DH and I are exhausted and our nerves are in shreds. I’m open to any and all suggestions.

I remember the pain of reflux, for both baby and parents! It's such hard work. We used omeprazol but instead of one dose of 1.5 we gave 0.5 doses three times a day. That seemed to help. But the thing that got us through it was to sleep in shifts so someone was always holding baby to sleep. As soon as my DH got in from work he would take baby and I would sleep until 11ish. Then he'd sleep until 4 and then I'd have a top up of sleep until about 6.30. This got us through to about 4 months of age when we were able to lay him down more. I know this is pretty full on but it meant we both slept! My little one lost a lot of weight due to reflux and the Drs could only prescribe omeprazol and gavascon. The other thing that helped was to move to bottle feeding. The weight of the milk seemed to help keep the food down. Good luck

I could have written your message a year ago. Second child is meant to be easier, you know what you’re doing this time, right?

I’m not going to lie. The first year of my second child’s life was the worst year of my life. Having an unwell baby, knowing something is wrong and not being able to fix it is soul destroying. It’s easier now.

We played around with the gaviscon dosage because it’s constipating. Found and third, then half the recommended dosage worked.

We switched to formula at 7 weeks in the hope that it would help. If you decide to do the same I would suggest goats milk formula then if that doesn’t work, nutramigen or neocate on prescription. Switching to formula didn’t help btw, but I think it would have unfolded the same way whether I had carried on EBF. I definitely could not have EBF with the level of demand and stress that was on me.

It sounds as though there is something gastro going on. The medical model is always just going to say potential CMPA -then they’ll resist doing any allergy testing. What it ended up actually being with my DS2 was a severe cat allergy. We found out at 10 months of age. Things changed a lot after we rehomed our two cats. I fought hard to get that allergy test from the hospital, got it through a loop hole, would have had to wait a year if I went the usual route.

Is your two year old just two? This is when we realised that our DS1 wasn’t developing language the way he should. If you can afford it I would recommend a private SLT assessment. You really don’t need to do this before 30 months, if time and money are tight. We did it at 27 months and it was really really useful but the SLT teaches YOU what to do with him and gives YOU the homework. I found the responsibility of this hard and when I was dealing with DS2. I couldn’t have done it in the first 6 months of his life. Things were too awful. My DS1 is 33 months now and the SLT still can’t figure out what speech disorder he has but his speech is coming along well.

If I had my time again I would visit a kinesiologist for intolerance testing when DS2 was 7 weeks old and his issues started ramping up. I went to one when DS2 was 13 months and DS 1 was 2 and a half. Found out they both were intolerant to the A1 protein in cows milk. This is genetic and not something that can be grown out of. Switching from cows milk to goats milk has cleared up DS1 mild gastro issues. The kinesiologist also picked up the cat allergy and picked up my DS1 has a dust mite allergy which has never been tested for. It has helped to explain his unusually young diagnosis of asthma. I have DS3 due in July and if there is any hint of unexplained health issues I will be going to a kinesiologist straight away.

Sorry! This is a lot of information. Please PM me if you want to talk about anything I have mentioned. Good luck

@DaydreamBeIiever not sure we got ranitidine 6 years ago so it's possible it's not available. Maybe ask gp? It did work for us.

Could be allergies, can you try a few of the specialist formulas? A couple on the trot rather than just one feed. Express so as not to lose supply?

I'm sorry you're having such a tough time.
Both my DD's had CMPA and especially with DD1 it was absolute hell with very similar symptoms to your DS.
I didn't BF but I understand that it can take quite awhile for cows milk to fully leave your system.
My DD's had an amino acid formula called Neocate and omeprazole for the reflux although the reflux went once they went onto Neocate. Within a week i had completely different babies and my sanity was restored.
It sounds like you have a lot going on so I hope things improve for you soon.

Just wanted to mention the cranial osteopath again - we only needed two sessions for ds. It was magic.

Thanks so much for all the support and advice. Last night was a game of two halves- he screamed pretty much non stop from roughly half 4/5pm til around midnight and then we were actually able to put him in the crib and he slept and just woke for feeds until 6. Those nights are such a rarity though. And he was back to screaming this morning.

I may give formula a try- I’m loathe to but I know it’s ultimately not about what I’d prefer but what’s best for him.

agree with Dentinox colic drops.

It's your choice, do some research. If your concerned about cmpa you would need to go doctors for a dairy free formula. We got some neocate when I returned to work. It's one of the only totally dairy free ones. Some of the others have reduced dairy but aren't dairy free. It stank like rotting fish he would'nt touch it. It's also extremely expensive so gps are not keen to prescribe it.

Just to mention breast milk generally digests easier than formula so is better for trapped wind but on the other hand formula tends to lay heavier in stomach so might help reflux.

If you are going to try formula, please please try nutramigen or alimentum. It will give you a clear view of whether what is going on is due to the contents of what he is eating, and not reflux/tongue tie/osteopathic issues. Then you can rule it in or out and move on.
Sending hugs, its so difficult to think clearly when you are sleep deprived

Ask your doc about Zantac. Couple of drops before feeds. Neutralises the acid in the reflux. A simple prescribed medicine. Life changer. Good luck😊

DD was the same. But no meds other than infacol etc.

She has multiple allergies now. But it did get better.

I think 6-8 weeks was awful as you are so shattered by then but the phase where things began to ease is still far off.

I sympathize with the poor mite with Gaviscon constipation... Two weeks of the bloody stuff was enough for a grown adult!

I was able to sleep sitting up in bed with DD across my knees feeding and napping. This was after I fell asleep in the feeding chair and nearly fell out with her. She would only sleep for short spells or laying on top of me. Not ideal at all.

Have managed to get an osteopath appointment tomorrow at OCC (many thanks to @GreenOlivesinGin for the suggestion, I’d never heard of them). I’m not expecting it to be a magic bullet but I’ll give anything a go at this point!

Good luck OP, I hope it helps!

Good luck. X

My ds 1 was exactly like this. You start to feel you must be doing something wrong because they seem so blooming unhappy whatever you do. Cry when they wake up, cry when you put them down.
We never had a diagnosis of reflux but looking back I think that’s what he had. Things definitely improved as he approached 1 and he started going to nursery. No thanks to me but he started sleeping better and just being generally more amenable. I went back to work too so had other things to worry about. Also when he started on solids and the odd bottle of formula things stabilised somewhat. Those days are hazy now as he is 19 but it was a horrible episode and I had to think hard and long about trying for ds2. No words of advice but just look after yourself as best you can and if family offer help don’t turn it down !

What’s terrifying me is reading all these posts saying “my DC was like that, it got better after 6/10/12 months.”

I can’t cope with another 4+ months of this. I will actually have a breakdown. We’ve had a really nice day out today, got home and he spent 3 hours screaming. I’d bought some dentinox so gave him that, got some burps out of him but still he screamed. Eventually got him to sleep only for him to wake up and start crying as soon as we put him in his crib. I fed him, DH changed him and he seemed ok, he was even smiling and gurgling a little bit… but it didn’t take long for the gorgeous smiles and squeals to turn to scowls and screams… so once again I’m holding him, patting him, shushing him… I get him settled and back to sleep, only for him to wake up and start thrashing and squirming again the minute I try and put him back in his crib.

I can’t do this any more. My back aches from carrying him in that damn sling all day. My wrists and arms ache from all the fucking back patting and rubbing and supporting him when I’m feeding him. I feel like I can’t breathe. Please, please don’t tell me I’m looking at another 4-8 months of this because I don’t have it in me. I just don’t.

@DaydreamBeIiever please know that all babies (regardless of colic) are at their absolute hardest weeks 6-8. New parents are at peak sleep deprivation at this point, you have an added child to contend with (I think) and you are truly exhausted on all fronts. Usually just after 6-8 weeks the circadian rhythm starts to kick in, and there begins to be the smallest resemblance of understanding day and night, you’ll get more sleep and an occasional real night of it, and it will really help your mental state, outside of all the colic stress. I remember my husband cracking and calling a night nurse at 6 weeks he was so exhausted. On that note, do you have a little savings where you could have a sitter/night nurse come for a few hours a week just to relieve you/give you some sleep? I wish we had done that looking back, Just know that things will get better sooner than 12 months. It’s going to be small steps, but keep doing what you’re doing. The colic is horrific, but you really will get there, I hope sooner than you expect ❤️

It’s okay to let him cry and walk away to compose yourself. It’s preferable to letting the feelings of rage build up (I remember them well!).

Our daughter had reflux along with breathing difficulties. It got better when she was around 8-10 months. But she had to be held constantly and my H and I took it in 4 hour stretches through every single night. It was hell and I well and truly didn't know why I had become a parent, none of my mum friends were going through it so felt so alone. I hope you don't feel alone.

It's bloody difficult and you're doing amazing!!

The things that helped were:

1. taking gaviscon with milk & then counteracting the constipation with lactulose
2. seeing a cranial osteopath

Our daughter has never stopped moving either, she was never happy; it was miserable and I am so sorry you're going through what we did.

She's now 2 though and an absolute delight 🥰 you will get there x

I completely feel for you. DS was exactly the same.

• check if his tongue tie has re tied as ours did and it

wasn't helping so getting it cut again may help stop any more air getting in than necessary

• Diary can take up to 4 weeks to come out of your system so give it time. Soya proteins are very similar to diary so i'd cut that out too and see if it helps.
• Omeprazole didn't work for us as one of its side effects was wind so just aggravated him. Lansoprazole is another option and worked a lot better so may help.

It will get better. Stand your ground with the doctors and don't let them palm you off saying it's normal for a newborn to act like this.

OP, 8yrs ago I was where you are now, but with my daughter (bad reflux, tongue tie and colic). My son was 7 at the time. It was hell. She didn’t sleep and couldn’t even sit in her infant car seat without screaming. She had to be bolt upright (so normally she’d be in her baby wrap and strapped to me). She wouldn’t take a bottle or formula, and would only breastfeed. My heart really goes out to you. I know what it’s like.

We used ranitidine (dose needed titrating up as she gained weight), omeprazole, prebiotics for babies, colic drops (and something else I can’t remember name of). Also went to a cranial osteopath. If someone told me that me stripping and running naked up and down the town high street in sub zero temps, whilst singing “baa baa black sheep” would cure her problems and help her sleep, I probably would have done that!!! I literally would have tried anything.

It was one of the worst times in my life, not helped by XH recovering from a massive RTA and having to deal with that (and side effects of that).

She started weaning onto solids at 5/6 months which really helped things and then a wonderful friend sent me the sleep plan that she used for her baby. Ten days of using that sleep plan and she was sleeping properly. It was a lifesaver.

So for us, I don’t know if it was one particular thing that helped, or all of it in combination. I do know though that if any of my friends ever have a baby like my DD, I’d be offering babysitting so that they could have a shower and a sleep!!!

You won’t feel like it but I promise you’re doing great. You’re amazing. You WILL get through this…and we are def with you! Xx

Will he continue to scream even if you try to feed him?

No it won't be 2 more months of this. It will get better. It will chop and change... you will find what works and what doesn't. I'm not saying it will all magically disappear but it will get easier.

I would avoid eating or drinking soy, there's a chance that could be making things worse.

Sending strength OP, I really feel for you. You will get there!

I had the same with Ds2 but I also think the frustration as a parent comes from an expectation of being able to put the baby down etc however I just accepted that this was going to be our new normal. That I would carry Ds2 round in a sling (sling library was amazing), that I would feed him and change him in an upright position as much as I could, I wouldn't lie him down on his back, his cot was propped but he slept on me every single day in the day. At night he went down semi-asleep. But he was older than your 8 weeks.

We were dismissed by HVs as he was gaining weight so they didn't care that we were feeding him like a newborn at 4 months old but our sanity was in jeopardy.

We did the usual gaviscon route then ended up with a paediatrician who prescribed a prescription formula which massively helped and stopped all the writhing, screaming, back arching that used to happen. We were fortunate that the paediatrician witnessed the reflux about 2 hours after his last feed. It did not however stop the reflux just lessened it and we were told to give him a dummy as they keep swallowing and it helps prevent scarring of the oesophagus.

Dh and I tag teamed, but we never patted him or jigged him up and down ever, we were told this can unsettle them so we stroked his back instead when he was upset or for winding, stroking upward. The Baby Whisperer who I followed for Ds1 dealt with a reflux baby. So if memory serves, to wind - the baby goes upright onto the left side of your chest, with their arms over your shoulder and as the stomach is on the left you use your right hand is stroke upwards, more side than back.

It is shit, totally shit. We didn't have any family close by to help but I just did one day at at time and accepted the limitations of day to day life. I knew that at some point this had to get better. Ds2 is now almost 16 years old. But the horror never leaves you.