Just keeps getting worse

[Cosmo89]

I'm so sick if this. I'm completely on the edge. 9 mo DS has been awake for nearly 4 hours crying. This is an all too frequent event - going on for months- and I'm at the end of my tether. Unless he's immune to painkillers then its probably not teething related. He's being treated for acid reflux but the meds were interrupted by a bout if sickness that recently got him, so that may be the reason- I'm trying to hold onto that, to give myself some hope that change is possible. At the lent it looks that I'm
Not getting any sleep tonight and neither is my partner.

I just feel so low. I try to make changes. To diagnoses the problem. I'm constantly trying to find solutions, trying new things out, but nothing works. I'm so tired all the time, completely without time to relax (evenings spent marching him up and down) and my relationship with DP is really suffering. Am constantly in tears at night because I know that this is just going on and on and I'm fed up getting nowhere. Tonight, like most nights, I wish if never had him.

Moment. Not lent.

Oof that much crying is rough.
No advice, I'm afraid, but my sympathy & a bump.

Really sorry to read this, am in pretty much the same boat, although my 10 month old goes down ok but just wakes up all night from about 10. Its beyond shit, isn't it? What's your partner doing to help you?

www.cry-sis.org.uk/

As Miffy says, this is really tough when you're in the middle of it. You will survive it and it will get better. No other advice than that, I'm so sorry. It is but a distant memory to me as my youngest ds is 9, but I remember endless tearful nights pacing up and down wondering what I had done wrong with this child, and why I had ever decided to have children in the first place.
I found the turning point for me with ds1 was 12 months, and I know that 3 months to you now feels like forever, but you will get through it and look back with the rose tinted glasses that we all tend to wear.
I hope your night improves enough for you to get a bit of sleep. Best of luck, it will get better.

Have been to the GP about it intermittently since he was 5mo. Told that it was teething, which I simply don't believe.
Had to pay privately for a peds appointment (reflux specialist) who thought it was silent reflux - GP
Wouldn't refer us because saiid it was teething.
Part of the problem I think is we're not getting access to people who might help us. I do believe there is something stopping DS from sleeping- probably acid reflux - but I'm not a dr.
He's displaying major discomfort though. Which makes me unwilling to sleep train.

DP is great. He's better caring for DS than me- he's more patient and doesn't dissolve into tears when he's tired.
I feel like a useless parent.

And I should say that the dr who thinks its SR is a leading specialist,
I only doubt it because everyone seems to doubt me (GP, my Mum- who all seem to put this behavior in the normal range- I'm sorry but a 9mo with a significantly worse sleep pattern than a newborn is NOT normal)

Cosmo you are not a shit parent you are worried about your baby and your instinct is telling u something's wrong! Fuck ur Gp and your bloody mother
Call up nhs direct when he is at full capacity screaming and insist on an out of hours appt, at least this way you can get a referral to a specialist without having yo go through GP! Have a and big hugs xx

Despite being a GP myself I felt no-one took me seriously enough when ds was a baby and screamed at so much as the sight of milk and wouldn't drink. The diagnosis of silent reflux came too late, by the time the meds worked he had a feeding phobia and we spent the first year of his life in and out of hospital. I got so mad being fobbed off by health care professionals with a lack of knowledge in this area. Because of ds's history I have made reflux in babies a special interest of mine, but I am sorry to say that many GPs do not have enough knowledge in this field. Mums also know best - if a mum tells me that something is "not right" with her child, alarm bells ring. If you feel like your ds is in pain and writhing about, rather than just wanting you and not wanting to be put down, then I would go back to your GP armed with some info about reflux and ask to try some medication. First line is gaviscon, although that does only work for about 50% of babies with reflux and you have to watch out for it causing constipation. If that doesn't work then ranitidine is next line treatment - I had to argue with my own GP to have dd2 put on that, despite it being on the NICE guidelines for the treatment of reflux in babies. Ranitidine is much more effective and would help in diagnosis - if it helps settle your ds, it will confirm your suspicions. Really hope things settle for you soon, I am all too familiar with that end of tether feeling and it is awful. But it will pass - I have ds1 (4) and dd2 (5 months) and my sanity is now almost fully restored! x

Thanks everyone - it's pretty shit really. We were meant to be going on holiday in a couple of weeks (to New York) but there's no way we can fly thousands of miles just to be pacing him up and down in a New York hotel room until the early hours. I don't know whether we're going to get our flights refunded - probably not - but I guess I'll try if things don't improve. It's the first holiday we've had in years, and we can't' afford to waste the money tbh (£1000 is an awful lot of money) but I don't see what other option we have.

Mummytobenji - the WORST thing is not being listed to, isn't it! I feel that because I'm a woman in my thirities with her first child that I'm first in line to be fobbed off and told I"m being ridiculous, that I just don't know what babies are like because I've spent most of my life focusing on my career and education etc. How would I possibly know what's wrong with my son!

Anyway, the private dr we saw put him on ranitadine, which did improve things but not totally (ie. he still was off food). So we're trying Omeprazole - 10mg per day. DS has been ill recently - so I took him off the Omeprazole for a bit, as he was puking up generally. Maybe it was the time off the meds that has made him so much worse. He also seems to respond really badly to fruit. The times it has been worst at night, he's had a tiny bit of apple or orange during the day.

It's definitely pain/discomfort that is keeping him up at night, rather than a general - "I just want to be with Mum and Dad" (something he's never actually done really) feeling. He IS teething, which I don't think helps things - he's got 3 coming through at once - but we give him neurofen to help him with that and, as I said, unless he's immune to painkillers....I hear him bring up stuff in his mouth too, his poos are very vinegary....(grargh! Why am I justifying it again!)

I just re-read my posts and can see how incoherent I am - apologies and thanks for providing support and advice. He finally crashed at 2 last night and slept for 4.5 hours. Not enough sleep for a little boy. Or Mum and Dad.

Hi OP, I'm so sorry to hear what you're all going through. I must confess my DC1 never suffered with acid reflux (she was just a crap sleeper! And 4 years on it IS just a distant memory!). I have a DS (16 wks) and from about 4-8 weeks he would cry for hours on end, usually starting around 6pm and crashing around 9-10pm.

I took him to a cranial osteopath when he was 8 weeks, had 3 sessions and haven't looked back. He is a different baby, i can put him down awake and he drifts off to sleep by himself.

I realise your DC is older and it may take longer but it may be worth a try.

Also can you get a friend/relative to come over of an evening, even once a week or once a fortnight and take DC out to let you rest? Or take him for a drive while you and DP have dinner or you take a bath? Sometimes a change is as good as a rest.

I know it seems a lot to ask but those who love you would rather give up their evening than see you suffer a breakdown! And the crying won't get to them like it does to you, they will be experiencing the situation from the standpoint of a good 8-hours sleep the preceding night.

Hang in there xx

Lots of sympathy from another reflux mum! I'm also a HCP & has to be very assertive to have it taken seriously - despite him projectile vomiting up to 5 x daily & being off the bottom of the growth charts

A few thoughts, based on experience:
-restart the Omeprazole - if his vomiting has increased he needs to go back on it - as acid production will just increase & cause more pain.
-my DS was on 20mg - discuss with your GP/consultant to see if a higher dose is appropriate.

• how long has he been on medication? It can take up to 6 weeks for maximum effect
• do his doses require re-calculation, based on weight? The doses frequently need to go up if he's gaining weight.
• I found DS's reflux worsened considerably with teething & illness.

-you could ask about stomach-emptying drugs such as Domperidone - they can often have a role in combination with other drugs.

• assuming that cow's milk protein intolerance has been ruled out? It's often a cause of reflux & the only solution is to use a low-allergy precription milk or dairyfree diet if you're BF.

We saw a specialist paediatric gastroenterologist at a regional centre children's hospital & got taken much more seriously.

Reflux can have you at the end of your tether. I used to think I was losing it.

I really hope things get better for you soon.

I don't have any experience with this but just wanted to say that sounds beyond tough

I would record something on your phone (as cries are v different; hunger, pain etc.) plus make a diary for a few days, what they ate, # of feeds, how they seem, naps etc. You might see a pattern yourself as well - then show both to GP.

Do your research first re. NICE recommendations and get assertive! This is your DS and if you think something isn't right it deserves proper investigation. If you're not happy tell them you're not happy and will be seeing another GP for specialist referral. Tell them about your private appt.

Best of luck to you :)

Has cow's milk protein been ruled out OP? This is, IME, an often overlooked cause of reflux or a factor in it not responding fully to medication. Was/ is he BF, or is he on formula? Is he eating milk products like yoghurt, cheese, etc?

It sounds hideously tough.

Re the omeprazole, you need to give it on an empty stomach for proper absorption and at least 30 minutes before food or milk (which mightn't be a problem if he's got feeding aversions :( ).