Really struggling

(47 Posts)
stargirl1701 Tue 02-Apr-13 05:04:42

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.

AmbrosiaCreamedMice Tue 02-Apr-13 05:11:43

It's like torture innit? Have you tried walking her in pram around the house/road? (I'm sure you have but screaming babies make me leap to attention)

stargirl1701 Tue 02-Apr-13 05:16:28

Yes. We have tried everything except CC and CIO.

AmbrosiaCreamedMice Tue 02-Apr-13 05:24:04

I don't know what CIO is. It will improve though, I didn't see any kids in reception still wailing. Much.

Someone helpful will be along soon x

ellangirl Tue 02-Apr-13 07:54:10

How are you? hope you managed to get aome sleep sad Is she ff or bf?

Iggly Tue 02-Apr-13 08:00:58

She's got silent reflux and excema - that's why she like this. Do not use cc or CIO please.

Have you got medication? Cream?

Have you cut out foods which could trigger the reflux? Have you ruled out tongue tie? Does she have a dummy?

stargirl1701 Tue 02-Apr-13 08:46:45

She snuggled in at 6am and fell asleep till 7.30am.

She is ff. She has hydrocortisone and Epaderm for her eczema. She has Ranitidine for her silent reflux. I 'be been told to avoid citrus fruit & tomatoes in her diet. We are doing BLW as she won't be fed from a spoon. I think she thinks it's a syringe. HV thinks she has CMPI. GP says no. We see a consultant paediatrician tomorrow...we've been waiting a long time for this appt.

We're not doing CC or CIO. I've written to Bedtime Live on C4 and Prof Tanya Byron at The Times. We've not heard back from either.

stargirl1701 Tue 02-Apr-13 08:47:36

She has a dummy.

She has a posterior tongue tie and lip tie. The NHS will not operate as she is not bf.

ellangirl Tue 02-Apr-13 08:53:21

Has anyone suggested different formula? Hv might be right. Dairy allergy quite common and could be contributing. GP might not be that well informed. No amount of sleep training will help if there's something else going on and she's uncomfortable or in pain. when that's sorted you can try then might have more success.

Carolra Tue 02-Apr-13 09:34:07

Have you read The No Cry Sleep Solution? Its got lots of ideas which helped us as I wasn't willing to do CIO or CC - dd was sleeping through within a couple of weeks of starting a mix of the routines in the book. Reflux is a nightmare, my dd was on domperidone, ranitidine and baby gaviscon at one point, not sure if any of it really helped, but she grew out of it around 7/8 months. But as ellan says, sleep training won't help if she's in pain.

I remember the nights when DD was up from 2am for 3 hours... My dh booked me a night in a hotel one weekend and forced me to go (I was really reluctant!!) but he asked a friend to go with me and we did have a lovely time in the end. One good night's sleep after months of exhaustion really helped.

Good luck with the consulant tomorrow. My advice is to make a list today of everything you want to talk about so you don't get distracted and forget something. And don't get fobbed off either!

Iggly Tue 02-Apr-13 09:36:17

Yes to the different formula! Can you see another GP?

I would be pushing hard - male a diary of night wakings, film her if need be. Do some research and present it to the GP - sometimes they actually don't know stuff like this.

stargirl1701 Tue 02-Apr-13 10:13:49

Yes to NCSS. We've been trying ideas from it since 4 months.

We tried SMA Staydown for Reflux. It sorted out the vomiting but made her very constipated so we had to give Lactulose too. hmm

I don't know the best approach with the paeds doc. Burst into tears (not hard at the mo) or be really professional? How do we get our desperation to come through?

Iggly Tue 02-Apr-13 13:46:22

Tbh sleep training won't work until you tackle the silent reflux. Both of mine have had it.

With the paediatrician, make a list of the issues. Make a note of how often she is unsettled. Also explain the impact on you and her. Ask them how they can rule out dairy intolerance which is common with silent reflux. So if you get upset, you dont come across as being just overly emotional - you have the information to back up what you're saying. Don't be afraid to be firm if it looks like going nowhere. Ask if you can trial the formula (you can get hypo allergenic formula which tastes grim but no reason not to try - I know some who've introduced it later, you just mix it with their usual milk to get them used to the taste).

Are you going with someone?

Iggly Tue 02-Apr-13 13:52:01
prizewinningpig Tue 02-Apr-13 13:57:10

My oldest was the same. The silent reflux will get better soon and very quickly. They just grow out of it. Then you will be able to attempt sleep training. We very gently weaned the oldest off all his sleep props one by one. He cried a bit, but far less than he did over the eczema and reflux and another condition he had. He started sleeping through reliably at nine months and has done so for the past five years!

You baby will do the same to her own timetable. In the mean time, call on any help you can. Ask a friend to come and look after her so she can help. Any relatives around who could do a couple of nights?
In terms of the doctor - let them know how you are feeling. If you cry, you cry. I think it is hard for them to tell the babies and parents in real need. There waiting rooms are full of worried mums. You need to make sure you let the doctor know exactly how she is and the impact on you.

Another thing, the oldest has oral aversion - wouldn't let anything near his mouth. Wouldn't take solids until about nine months and went on nursing strike. For some reason he was OK with the ranitidine though! We just offered him food and he took it eventually. Nursery helped as I think he saw the other kids eating and wanted to join in. Again, try not to worry about how much she does or doesn't eat, just keep offering.

stargirl1701 Tue 02-Apr-13 19:41:32

OK. DH & I have come up with some ideas for tomorrow.

Issues:
Hours of screaming
Frequent overnight waking
Cat napping during the day
Very pronounced startle reflex waking her up
Highly, intensely clingy all the time
Clear vomit after solids
Very unsettled after solids
Blueness round lips/mouth after solids (present initially when bf feeding as a newborn)
Red welts on face after eating avocado, egg, tomato
Very cold hands
Frequently green foul smelling poo
Gurgly stomach
Posterior tongue tie
Face covered in milk when ff and bf.
Painful farting
Sleep/movement association

Impact:
DD spends a lot of her life crying
DD is frequently inconsolable
DD feeds frequently (2 hourly)
DD struggles with routine (chaotic)

Parents are still living like DD is newborn
Sleeping when baby sleeps
Both exhausted
Mum drugging herself with Night Nurse overnight
Mum dreads taking her to baby groups
Parents can't get any sleep training methods to work

Possible actions:
Investigate intolerance
Trial of hypo formula
Change medication to ompromazle (sp?)
Discuss the dangers of extended use of Calpol
How to deal with rapid deterioration of silent reflux symptoms, e.g. after infection.

Anything else you would suggest?

stargirl1701 Tue 02-Apr-13 19:59:20

Bump.

Iggly Tue 02-Apr-13 20:42:52

No - that's plenty to be getting on with! A bit worried about you drugging yourself with NN though?
I'd also ask about seeing a dietician who can help with foods that trigger silent reflux. (Although might be much luck but I did find weaning a nightmare and I did have to stick to meat and plain carbs for a while before introducing more exciting foods which was miserable)

stargirl1701 Tue 02-Apr-13 20:46:05

Thanks Iggly. The drugging is just once a week on a Sat night so I get one night's sleep a week. I know the NN will knock me out. I'll add dietician referral to the list. Is it worth asking to see a dermatologist for the eczema?

Iggly Tue 02-Apr-13 20:53:17

Yes - although if it's diet related it should go. I feel for you and your poor dd! It's hell on earth.

stargirl1701 Tue 02-Apr-13 20:56:01

Aye. This not the picture of motherhood I had 6 months ago. I really haven't enjoyed mat leave. I hope we are taken seriously tomorrow. I've got my hopes way too high. I can feel the tension in my body already!

missalien Tue 02-Apr-13 20:59:43

Wow poor you it could well be diet related. My son was like this life was hellish he was dairy intolerant and soy and eggs. Keep a food diary if this has just recently got worse astounding are trying to wean her it makes sense . Dairy free as much as possible . Get the to docs with it all written down . Be strong it will get better soon ! Keep us posted

Iggly Tue 02-Apr-13 21:21:10

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.

stargirl1701 Tue 02-Apr-13 21:22:43

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!

Iggly Tue 02-Apr-13 21:49:35

Don't be afraid to let it show. Perhaps agree that your DH will do the talking if you get too upset.

melonribena Tue 02-Apr-13 21:55:45

I have no advice. I just wanted to say good luck for your appointment and I hope you get sorted soon.

prizewinningpig Wed 03-Apr-13 09:01:06

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.

Nicknamefail Wed 03-Apr-13 09:46:55

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.

Chandon Wed 03-Apr-13 10:00:23

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.

Chandon Wed 03-Apr-13 10:02:52

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.

xigris Wed 03-Apr-13 10:12:24

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 flowers

stargirl1701 Wed 03-Apr-13 10:43:31

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.

stargirl1701 Wed 03-Apr-13 10:45:20

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 grin

stargirl1701 Wed 03-Apr-13 10:47:56

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.

stargirl1701 Wed 03-Apr-13 10:49:20

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.

stargirl1701 Wed 03-Apr-13 10:49:48

Thank you x. Appt is at 3pm.

prizewinningpig Wed 03-Apr-13 11:18:26

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.

Chandon Wed 03-Apr-13 13:47:15

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.

stargirl1701 Wed 03-Apr-13 16:29:51

Hmmmm.

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.

missalien Wed 03-Apr-13 17:30:47

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 !

stargirl1701 Wed 03-Apr-13 18:03:24

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.

Iggly Wed 03-Apr-13 19:01:15

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?

stargirl1701 Wed 03-Apr-13 19:14:43

Nothing is changing tonight. DH & I need to talk this over - probably at the weekend.

EvidenceBasedMum Fri 05-Apr-13 15:02:35

Hi Stargirl,

I’ve been lurking on Mumsnet since my daughter was born (she’s 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 you’ve 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 Christmassad) for feeding refusal. She was only screamy in relation to feeding and sleeping, which made things a little easier…but wouldn’t 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 wouldn’t 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 wouldn’t feed day OR night (she’d done very well for the first 8 weeks), and a freezer full of breast milk she wouldn’t 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 couldn’t 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 she’s still in pain, she won’t sleep and she won’t 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 can’t sort her sleep out until her physical problems are sorted.
3)Ask why they won’t 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 isn’t 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 AREN’T 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 aren’t terribly interested in you and will use the, “we’re 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 won’t 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 don’t 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 won’t 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 won’t stop and it looks like we’ll 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?!)

minipie Fri 05-Apr-13 21:01:00

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.

stargirl1701 Mon 08-Apr-13 14:37:07

Hi folks. Well, DH fell ill with a stomach ailment so it's been fun here! grin

DD has been sleeping gringringringrin

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... grin

stargirl1701 Mon 08-Apr-13 17:15:38

She's come down with something this afternoon. Just sleeping and eating. Poor wee thing.

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