LittleRefluxers

Desperately seeking advice/reassurance re: my 13 month sleepless silent refluxer..pls

Hi There,

I wondered if anyone else on the forum is in a similar boat to us???. I have been in contact with one of the members who has been very friendly and offered great advice (thx Beverely) but she suggested I post on here to see if anyone is on a similar path to me.

My little boy (2nd child, I have another son who is 3) who is now 13months old has literally screamed, (obviously in real pain) all night since the night he was born, after many tearful frantic calls to H.V and trips to g.p, and admission into hospital, we went through all the dairy free options of milk which unfortunately didn't help. The H.V tried refering him a couple of times to a specialist as she was convinced something gastric ( he had severe diarhoea since birth to 5 months, followed by terrible constipation up to 10 months, could never sleep in cot only intermittently upright on our chests) was wrong but the G.p kept blocking the referal as she kept fobbing me off and repetedly refering to the fact her son had never slept as a  baby and there was nothing wrong with him!  After 10months of hell and feeing like I was on my way out from no sleep, we finally got to see a gastric cons when he was 10 months old who diagnosed silent reflux,( which now all fits into place with his symptoms). He put him on Ranitidine and to review him in 3 months. 2 months down the line things haven't improved as much as we hoped but a little and he now only wakes about 4-5 times as opposed to 12, 13 +. He sleeps a little in his cot as opposed to being propped up by us, And when he wakes the pain is not as severe as he is not screaming for up to hour, with nothing that will console him, as he has been for first 10months. He occasionally now goes 4 hours when he first goes to bed (which is a break through) but the rest of the night continues to be very frequent waking until he gets up properly at 6am. So I guess things have made alot of progress but 4-5 times after all this time is still v tough.

I just wondered if anyone else is going through this sort of thing or been through it as myself and my husband are finding after 13months it is really taking a toll on us. My 3 year old who had been sleeping well previously, now wakes throughout the night (probably the constant screaming? and insecurity?) needing settling since his little brother arrived it really has turned the household on its head. I must add that he is a truely gorgeous little boy (they both are) who despite his nightly pain is for the best part a happy boy in the day, full of fun and we all love him very much. I am just really struggling with the exhaustion, my body and mind are hurting and I don't feel understood if I try to talk to friends or Mums with babies of similar ages, they just think I am barking mad and moaning. thanks in advance for any help or similar experiences which i'm sure will help as we will know we are not the only ones after all  :-)

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Big Hugs. It sounds like your having a really rough time.

I've a little boy similar age (nearly 14 months) who is a silent refluxer and Mutiple Food Protien Intolerances.  He also is generally happy during the day but a really poor sleeper at night (used to wake up every half hour screaming and would take an hour to put back down).  It has recently got better for us due to I think being on the right combination of milk and medicine and in total throughout his life we've probably had two weeks of good sleep (not continuous).

So in summary it can get better for you.  The ranitidine doesn't sound like its doing it's job as well as it should be. You could either ask them to up the doseage or switch to a PPI like Omperazole or Lansprazole.  My boy was put onto special formula way before he was given omeprazole, but to be honest he needed both before he could sleep pain free at night. 

You're right though it does take its toll after 13 months, broken sleep is no good for anyone.  I would push for something stornger to ease the reflux pain. 

Good luck and let us know how you get on.x

thank you for your reply.. I'm sorry to hear of your tough time, but it is very reassuring to hear a similar experience and no your not alone, do you mind me asking which milk your little one is on? I'm wondering whether I should have persisted all those months ago with the neocate but he just hated it and everything was so tough I gave up, I am due to see cons again soon will discuss with him, thx

Sebs on neocate.  Was breast fed till 4.5 months, then switched to nutramigen 1 and finally neocate at 9 months.  To be fair it was a nightmare to transfer him across from breast milk to nutramigen I just had to keep persevering and offer no other option (and that was mixing half and half).  I must say aswell that being on nutramgien and also neocate didn't solve everything.  I could tell the nutramigen worked a bit as the eczema cleared up and he actually started taking more milk and could tell the neocate was working better as there was no screaming and arching after feeding.

As for night times they didn't improve till we got the omeprazole and played about with doses (took about 6 weeks for us to see any improvement).

Definitely worth retrying the dairy free milk again - though unfortunately with all this stuff it takes time to see a difference.  Hope this helps.x

Hi Hayley,

Nice to see you braving the forum. Hopefully you'll find some inspiration and definitely some sympathy here. Afraid I'm out of ideas beyond getting some stronger reflux meds (omeperazole) and retrialling Neocate or another milk. The fact that you talk about wider gut problems really does make it sound like a food intolerance issue but I know you felt the dairy-free milks didn't help.

Hope somebody else can think of something that I've missed.

X

thx beverley, like I just added above to Laura, since having contact with you I regret giving up on the Neocate all those months ago, I was a bit clueless about the whole thing and he hated taking it so much I gave up after maybe a week or two weeks (i honestly can't remember now). I was trying to get him from breast to neocate and he wouldn't take at all, so then I would express and give half breast milk  and half neocate mixed, then quarter breast to 3/4 neocate so even though I was completely dairy free he never had spell of just the neocate it was always mixed with my milk. ? hmmmmm

Hi, 
Im with you here! I have a two year old and a nearly 8 month old refluxer who has suspected intolerances but no improvements with dairy free just yet. He usually wakes every 30-60 mins and I have to lie him on his side am with my arm around him to keep him in this position and I have to breast feed him to get him back off to sleep. He requires a lot of effort and is very grumpy during the day, it has turned our lives upside down! 
I would press the doc for stronger meds and if they don't work pursue the intolerance route! 
Hoping things get better for you soon! 

Thankyou for your support :-) how long have you and your litte one been dairy free? Its all so hard isn't it! It makes me feel better just knowing people understand me and our situation, the breast feeding every half hour to an hour all night  sounds so familiar, keep strong. Will phone up today and chase his follow up appt .

It's been 18 days that we've been dairy free now, the consultant said to give it at least four weeks, so that's what we're doing. I'm breast feeding though, so it's a bit easier than introducing a new formula. 
It really is hard, especially weaning! 
Hope you can get a follow up appointment soon, from my experience, build up your knowledge brings power, hopefully knowing more about the condition and medicines will make the docs listen! Good luck!

Jenny, just a thought...

Your story is so similar to mine in many ways. I have 2 refluxers with the same age gap as your two. My first was CMPI... my second is MFPI and whilst I persevered with the breastfeeding until nearly 10 months, she has only improved once on a neocate only diet. 

I know this probably isn't what you want to hear, but I followed an extremely restrictive diet (I couldn't eat milk, eggs, wheat, soya, all fruit, tomato, onion, garlic, coffee, tea, peppermint, celery, or any spices - and followed a diet free from all this from the time she was about 5 weeks old) and although things improved, she was still screaming in pain, feeding little and often, waking hourly at night, pooing mucous (and occasionally blood) and vomiting up to 80 times a day.

We managed to get her up to 6 foods we thought were 'safe' but when she was nearly 10 months old she had an impedence test that showed she refluxed constantly - when she wasn't actually vomiting, she was silent refluxing, and that the reflux was bile related and indicative of food allergies - even on such a restricted diet!  Our consultant insisted we went onto a neocate-only diet... and it was the best thing I have ever done for her.  I'm not saying that it has totally fixed her (she still vomits around 15-20 times a day) but she is generally a happy, healthy little girl now at 15 months. She's just had scopes done which still show allergic colitis and duodenitis even after 5 months of neocate, but generally things are much better.

I'm not in any way suggesting that neocate will necessarily be the magic cure for your little one, but I wanted to share my story in the hope that it gives you something to cling to when times are tough.  At 8 months I was in the same position as you are now, and very confused, tired and stressed. Stick out the very very strictly dairy-free diet for a few more weeks, but please then consider neocate as an option if things haven't improved. I know others will back me up when I say that it is perfectly possible to breastfeed a CMPI baby, and even an MSPI baby - lots of people have managed that... but when the baby is reacting to multiple foods (MFPI) you do need to bite the bullet and move to formula. 

Hope that helps xx

Hi Sarah, I've just realised this message was for me. Thank you, I really appreciate you sharing your story. I have been at my wits end and reached the end of my tether today. I also suffer from ME/CFS and know that a restrictive diet can help me get better too, so I've decided to go gluten, soya, dairy free and possibly egg as I'm sure he's had a bad reaction to it, although the consultant thinks its teething. The jury is out on that one for the next couple of days. 
I'm going to do the diet for me, but if it works for LO then an absolute BONUS! Do you have any tips from your experience? 

Hi Hayley and welcome to LR! I'm sure many of us sympathise with your sleep deprivation, they don't use it as a form of torture for nothing. I have Matthew my LR who is now 21m and an older son who is 5, and who I thought had been a poor sleeper as a baby until Matthew came along....

As several of the others have suggested, I would push for omeprazole or lansoprazole. The other piece of the jigsaw for many of the LR and particularly as they get older (i.e those with no underlying intolerances seen to grow out of it as promised) is food intolerance. If you've never given the dairy free milks a really good trial (for some people 6-8 weeks to see the extent of the improvement) then that seems an obvious route to pursue again.

Once you find the right combination things will get better - on a good night we are now getting a 10 hour stretch which seemed unimaginable even 6 months ago.

Jen xx

Hello, wow. 10 hours. this is very reassuring to hear, thankyou! you have obviously been through it, I too thought my first son was a bad sleeper until little one came came along and made our first son look like a total breeze :-). Thanks for all the advice, and support, i feel a bit better already from the kind replies of support people have given. Thankyou

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