Really struggling(47 Posts)
DD has been continuously screaming for 3 hours tonight since 2am. Previous to this, she has woken every 40 min since bedtime at 7pm.
We have no idea how to help her. She is 6 months. She has been like this since day 1. She has silent reflux & eczema.
It just feels like like there is no hope of things ever improving tonight. This isn't what I thought life with a baby would be like.
She's come down with something this afternoon. Just sleeping and eating. Poor wee thing.
Hi folks. Well, DH fell ill with a stomach ailment so it's been fun here!
DD has been sleeping
We're getting 3-4 wakings per night which is much improved on 10-12! U haven't seen a huge difference in her reflux with the new dose of Ranitidine but her eczema has virtually disappeared with the stronger steroid. It has made me wonder if the writhing she was doing was 'itching' rather than gastric distress.
So, no need for CC! We have used our phones to make sure we give her a few minutes to self settle in the night. Max time 2 mins. And, she has! Not always, but sometimes.
So, some positives.
Thank you all for your advice and support. I may need it again, of course...
Christ, poor you and poor dd. I think you need stronger reflux drugs (omeprazole) and nonallergenic formula - nutrimagen or (better) neocate.
if you can't get these things prescribed, or at least not immediately, you could in the meantime buy some nutrimagen/neocate and try it for a few days - it's available without prescription, just pricey. I'd cut out other food for those few days too.
Ive been lurking on Mumsnet since my daughter was born (shes now 6 months!!) but finally decided to take the plunge and contribute, as your situation seems very similar to ours. Although now we are enjoying life out on the other side! Hopefully I can offer some suggestions. Sorry to have missed posting before your original Paeds Appt, but youve got follow-up soon so can revisit things there.
Anyway, my daughter had really bad (mostly silent) reflux from 2-4 months old, culiminating in 2 hospital admissions (over Christmas) for feeding refusal. She was only screamy in relation to feeding and sleeping, which made things a little easier but wouldnt be put down on her back at all. She was in a sling pretty much constantly, which helped a lot, but meant there was no possibility of getting any rest too. For about a month she wouldnt feed at all during the day (screamed at the mere sight of a boob or bottle) and woke every 45 minutes at night for a few sucks when still half asleep. And at that point I thought that was acceptable because at least she was feeding! (she was (is) exclusively breast fed but with attempted top-ups of expressed milk too).
We were eventually taken seriously because I had a tiny, skinny baby who clearly now wouldnt feed day OR night (shed done very well for the first 8 weeks), and a freezer full of breast milk she wouldnt drink and also because I am a hospital doctor so knew how to make the system work. Although at some points I was so broken I couldnt really advocate for her at all.
On her second hospital admission (at this point I went in all guns blazing) she was put on high dose omeprazole (which stops acid production) and domperidone (which increases gastric emptying) and 48 hours later she was a different baby. Literally. She fed properly, was clearly more comfortable, happy and settled and slept better (this was relative as it was still pretty poor until recently, but could cope with that as everything else was so much better). Now, at 6 months, she is an utter delight!
So, I thought I should share some tips (all with hindsight!) that might help:
1)Sleep in shifts: e.g. OH takes over 9-2, you do 2-7. Then you get at least some sleep every night. Unless you are getting decent naps during the day, you deserve as much sleep as your partner. Even if they are going out to work you are still working by caring for your baby.
2)If shes still in pain, she wont sleep and she wont stop crying. No matter how long you leave her. Make it about tackling her physical problems not her sleep. That is a battle you can win. You cant sort her sleep out until her physical problems are sorted.
3)Ask why they wont try omeprazole and/or domperidone if reflux seems the likely culprit (ranitidine had a partial effect for us, but that soon wore off, which is very common) Omeprazole is much more effective. There isnt that much evidence for drug treatment in reflux but you soon know whether it has an effect or not on an individual basis, so a trial period is definitely worthwhile. Make sure they give her a decent dose.
4)Has cows milk protein allergy really been discounted? She sounds very allergic to me. There are some European Guidelines on CMPA here espghan.med.up.pt/position_papers/Diagnostic_Approach_and_Management_of_Cow_s_Milk.28.pdf - read them, highlight the bits that apply to you and bring them to your next appt. It sounds like you should at least try a hypo-allergenic formula.
5)Make a diary of symptoms / problems and present it clearly e.g. she cried for an average of 7 hours per day over the last week. This was the most effective thing for us with relation to her feeding refusal. Sounds like you could do the same with hours of crying. At six months old my baby now hardly cries at all.
6)Doctors generally ARENT interested in sleep / routines / naps etc (harsh but true) they are interested in physical symptoms: she seems to be in pain (manifested as screaming), allergic type symptoms, the blue lips (this worried me what did they say about that?), whether there are any problems with her weight gain / development. Make videos of symptoms to show them. They also arent terribly interested in you and will use the, were getting no sleep line to excuse fobbing you off as not coping / an over-anxious mum (Sorry - am being such a cynic!). Make it clear it is about HER, with the implications to you coming second (I am by no means discrediting how awful you must feel, this is just how to spin it for maximum effectiveness).
7)Make sure you are clear about what they are saying. You have been told to use CC so verify with the doctor, Despite the fact my daughter appears to be in severe pain, and nothing has been done to change that, you suggest I just leave her to cry? Surely that wont make any difference? Make sure you pin them down on what they think is going on. TAKE NOTES in the consultation and ask them to send you a copy of the clinic letter that goes to your GP) so you have it all in writing. I dont mean to sound terribly disrespectful to paediatricians and GPs (I am neither) but, in my experience, I think sometimes it is hard to be taken seriously as a first time mum. Had I had confidence that it wasn't something wrong with me / my inability to cope, I would have pushed much harder for earlier interventions.
It is REALLY hard the hardest thing I have ever had to cope with. And I had the advantage of medical knowledge and a best friend who was a paediatrician. But there are lots of ways to make them better (and, as a last resort, they do all grow out of reflux). One thing I have learned is that, as long as you are relatively well-informed / have realistic expectations, if something seems really wrong it probably is really wrong and needs something done about it.
But I cannot tell you how good life is now she is properly treated. A slight double-edged sword is that, like you, she wont tolerate a spoon going anywhere near her and apparently has no interest in solids whatsoever So, after moving heaven and earth to breastfeed her this long, she now wont stop and it looks like well be carrying on until she is 14. Oh well
Best of luck x
(Goodness, have made up for not posting for so long with the length of this one. But hope it is helpful?!)
Nothing is changing tonight. DH & I need to talk this over - probably at the weekend.
I honestly would not be doing cc unless you're absolutely sure that the silent reflux is under control. Maybe give it a week first?
We've done shush pat. We've done gradual withdrawal. We've done pick up put down. All for at least 14 nights.
DH & I need to talk about what the consultant said and make a plan.
Star girl do shhhh pat, when they cry just shhhhhh noise and oat them on the back it works and its much kinder , I perched I. The cot with a v pillow for the night took hours but worked. Keep food diary for definite !
Well, we're back from the hospital. Ranitidine dose has been upped to 2ml twice daily and eumovate prescribed for the eczema. The dermatology nurse will be in touch regarding the management of her eczema.
And, we've to do CC.
We've to go back on the 25th April.
Good luck, hope you get the help you need.
Poor baby and poor you.
My advice is probably outdated, as DS1 is 10 now! Still remember it as if it was yesterday though. Pffff. We felt we never were able to enjoy the baby phase with him, and feel oddly guilty about that. But we have made up for it, he is such a calm happy child now.
Poor babies, it is miserable. But it DOES get better, it does.
Will be thinking of you at 3pm. I think daily baths are recommended now. Strangely swimming pool seems to smooth skin. I would stick with putting her down and leaving her, even if you go in after 3 mins. Eventually she will self settle. Eczema aveeno was recommended by several nurses.
I know what you mean about maternity leave. My first maternity leave was miserable. I had my second quickly, though, and had a wonderful maternity leave taking two little ones to baby groups! High risk strategy with reflux running in families.
Thank you x. Appt is at 3pm.
Not sure about the bath. We just do a weekly bath on a Sunday night as that was what happened when I was a child with eczema. I have read that daily baths may recommended now. I will ask today.
Chandon, we do 'le pause'. She tends to just get hysterical after three minutes. She has never self settled. Even in the hospital and midwife unit I was paving the corridors with her screaming for hours. She was unsettled from day 1.
Nick, we have Oilatum Jnr from the GP for the bath. We use Epaderm as a moisturiser. I have eczema so it's good for me too
Thanks prize. I know. But, I had really been looking forward to mat leave and baby groups. I just feel like someone else is going to get the 'fun' part as DD will prob be much better when I go back to work in Sep.
Didn't want to read and run, there are some great suggestions here so just wanted to wish you the best of luck. It sounds very tough
About eczema, our paed said to bathe baby obly once a week! Obviously wash face and bum with a flanel every day, but the rest of the body not.
Do they still recommend that? the best thing for eczema is, sadly, not washing. But babies and small kids do not really smell as long as you keep their face, bum and hands clean.
It is tough, my baby had reflux and cried whenever I put him down.
He did not want to be held either, so it was tough.
One thing though, we fed on demand and thsi meant evrey 2 hours sometimes, and the paed. Said that way he could never fully digest a feed, as it was always topped up. And that it was better to wait 3.5-4 hours between feeds.
Age 7 months we did ( sort of) controlled crying after the last 11pm feed, as I was on my knees ( husband traveled a lot, no family or friends nearby as we had just moved) and I left him to cry for 2 minutes ( I was used to rush in), then 4 minutes, until after a week I would leave him for 8 minutes ( not talking about leaving a baby screaming for hours!). And then he just started falling asleep. He would always cry for 5 minutes or so prior to sleeping, but then he would sleep. Sleep well.
So it worked for us, and the improved sleeping helped his digestion, I think, and his wellbeing. Whenever he was very upset and cried and screamed I would always go in. so not sure my "method" was hard core CC.
His bed was slightly tilted so his head was slightly higher than the rest of his body. Same in pram, never lied flat on his back but was in sitting up position from 6 months. He would often sleep during walks.
He also had eczema and allergies ( I think t is all tied together, as is hayfever) but that has inproved a lot.
There is FF especially for refluxy babies.
Also, once he walked and was more upright during the day, it all improved very quickly.
Best of luck, it is very tough.
Much sympathy to you. I am also in sleeping hell, but not quite as bad as yours.
Have you tried oilatum in bath for eczema? Also try other moisturisers from GP, diprobase is good. I'm sure you already are doing this, but you can't put enough moisturiser on. Also no soap in the bath, even baby soap. Apologies if saying things you already know.
Please post after your paeds appointment to share how you got on.
Good luck today. I felt the same about maternity leave the first time round. It was no fun at all. I went back to work early and everything got better from then on. Nursery got the baby into a routine and tackled some of the feeding/sleeping issues. But maternity leave is not the be all and end all. You've got eighteen plus more years of having your daughter around and you will enjoy it and have lots of happy memories.
I have no advice. I just wanted to say good luck for your appointment and I hope you get sorted soon.
Don't be afraid to let it show. Perhaps agree that your DH will do the talking if you get too upset.
I'm the same. I want to appear rational and reasonable even though I know I am straying from that path due to the stress and sleep deprivation!
Don't be fobbed off. Don't leave without getting something - sometimes in these appointments I have a tendency to think I'm over reacting then kick myself once I'm out.
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