Practical advice desperately needed - Keywords: reflux, ranitidine, sleeping upright, 8 weeks DS, exhausted, PND, exclusively BF

[BellaBear]

Ds, who is 8 weeks was diagnosed with reflux two and a half weeks ago, and after a hell of a night trying to get infant gaviscon down him and failing and a desperate call to my HV, we saw a lovely GP who prescribed ranitidine and diagnosed me with PND. (I am now on Lofepramine). He seems to be throwing up much less now.

Up to that point his sleeping was rubbish - rarely more than two hours night or day, and often less. We have since moved in with my parents and we are all taking turns at night holding him on our chests as he sleeps. His seep pattern has vastly improved - he will generally sleep from about nine-ish to 1 or 2 and then feed and feed again between 4 and 5am and again at some point between 6.30-8 am (all very rough times).

I am not particularly bothered about getting such a young baby to sleep through, what I am worried about is that he will not sleep on his own, whether in a cot (raised up at one end) or his chair or anything other than in someone's arms. He won't even sleep in my bed next to me.

We are all exhausted, I think my parents are doing above and beyond, and I can't see a way forward.

Practical advice is very much appreciated.

Thank you in advance

Three bits of advice - PLEASE try them all

1. Amby baby nest, they are on a stand and your baby can sleep slightly to one side without any risk of ending up face down. You can put them up against your bed so the baby will be inches from your face which will help them settle. Cannot recommend these enough. We loved ours.

2. Cranial osteopath. Helped a fair bit wiht our DD although didn't solve all her reflux

3. cut out the dairy in your diet. My friend's son was so ill he was in and out of hospital all the time and was told repeatedly by GP's and health visitors that her diet would make no difference to him. Eventually a consultant told her to ignore them and cut out dairy, and when she went dairy free most of his problems stopped. Turns out he was allergic to lactose (even today, at 4, stuff like certain brands of sausages can make him violently ill because of miniscule amounts of lactose). It might not solve your problems but worth a try just in case. My friend's experience was, by the way, very rare (unfortunate genetic mix of mum & dad) and AFAIK most relfux babies adapt to lactose over time.

Hi Bellabear,

I would be very happy to pass on to you the details of the lady we used and the agency I met her through. Not sure what the policy is on mumsnet in terms of advertising etc. though.

If some kind soul would let me know the policy/rules or, better still, let me know how to pass on a private e-mail address, I would be happy to make contact with you directly and let you have the details.

I have to say she was not cheap but she was a life saver. After meeting her I felt for the first time that we all might make it through the hell that was my life after all! DS was not the first reflux baby she had helped and I would not hesitate to recommend her. My DH's comment was, "what price your sanity?"

Hope you have a lovely time at your in-laws. I will look out for you on this board next week.

Have come to this a bit late but I know what you are going through. Ds was very similar to yours, bf, on gaviscon, ranitidine and domperidone, would only sleep in sling (upright) or on his front against our chest. If we laid him down on his back his breathing would go alarmingly loud and irregular even if he was asleep. Dh and I did shifts like you. He screamed if we took him in bed with us (still does).

Everyone has given you great advice. I would say:

1. Make sure his ranitidine dose is altered regularly in line with his weight. Think someone already said that it is very dose-dependent.

1. You can buy apnoea monitors like this, which will alarm if no movement is felt for 20s (ie if your baby stops breathing). Ds was in SCBU for 7 weeks and slept brilliantly on his stomach with his cot raised so his head was higher than his feet. If I was doing it all over again I would buy one of these and put him on his stomach. Controversial I know...

1. I tried dairy free and thought it made some improvement, but not a miracle cure. Worth a shot. Be very careful to cut out ALL dairy - kellymom has a list of ingredients on labels to avoid but my computer doesn't seem to want to find it...

It will get better, honest. Gradually ds's reflux got better and we cut out all meds when he was 4 months old. I can't quite remember how we transitioned from sleeping on us to being in cot but it just happened gradually without much fuss - once he was comfortable lying on his back we could just lie him down when he was asleep. He slept through (8-5ish) on his own in his cot at 7 months and goes to bed happily now (19 months). It's not forever! Good luck!

am here briefly, thanks so much for more replies

have seen GP and ranitidine dose is being adjusted weekly

my email is bella the bear at btinternet dot com with no gaps

DH's health insurance through work may pay for referral to paediatrician for DS and psychologist for me which is good

does anyone have any info on how lactose can be passed through breastmilk? I was allergic to cows milk after I was weaned off the breast as was my sister, but we were fine on breastmilk while my mother ate dairy. I am not dismissing anyone's advice at all, but I would be very interested in any literature on this.

HV tried a very hard push on us trying controlled crying on DS which makes me feel sick. GP is much more my kind of person and said we might try learning to sleep with DS on chest IF in a bed not the sofa. She isn't keen on apnea (sp?) monitors because she said there is evidence they aren't 100% effective although I have heard otherwise. But she did say we need to let him grizzle a bit beofre rushing to pick him up.

xxx

Hi it's highly unlikely to be a lactose intolerance, instead it is the cow's milk protein in breastmilk that some refluxing babies are reacting to. Human milk has lactose in it as well, and very very few babies are lactose-intolerant from the start, instead the ability to digest lactose is something that many people lose around 4 yrs old which is a natural weaning age. In contrast, the cow's milk protein intolerance is something that children can often grow out of as long as they have been avoiding cow's milk and cow's milk products for long enough. Both dp and I had the intolerance when we were infants and we are both fine now. Similarly ds1 (6yo) can eat ice-cream (which is one of the worst offenders) although I have to admit he doesn't have large amounts of cow's milk in his daily diet. Here is the article which first alerted me and dp to the possibility that ds1 had the intolerance. Also, the people on the BreastfeedingReflux group I linked to before are very knowlegeable on intolerances and possible dietary influences on reflux. In your case, and your sister's, I would guess that the small amounts of cow's milk protein in your mum's breastmilk probably weren't enough to give a serious reaction, although you may have been sensitised to cow's milk by them. When you were weaned, the amount of cow's milk protein you took in probably increased significantly, enough to see the ill-effects.

If you're really interested in reading about intolerances I would highly recommend a book by Jonathan Brostoff and Linda Gamlin here on Amazon. I have an older copy of this book and it is very well written and makes fascinating reading.

Your HV just doesn't sound as if she appreciates the situation. If your ds has reflux that is severe enough to have to take ranitidine, the crying is not just a call for attention, it is due to pain, and controlled crying will just make your poor son used to being ignored, but won't help him with his reflux. Grr . But I also agree that sometimes the 'grizzling' doesn't turn into full-blown crying and your ds might be able to go back to sleep if you leave him for a bit.

Hoping things start to get better for you soon

Hi all,

I wish I had had the wherewithal to know about/use this site when I was going through all the early stages on this - I thought I was the only one and it was something I was going wrong (not helped by the fact that this was more or less what doctors etc. were telling me as well).

I also thought that the idea of CC for ANy bay, let alone a reflux baby was harsh and I was very anti. My HV had suggested it to us as well. A couple of things I would say on this:

There is a continuum here. From leaving the to 'grizzle' for a few minutes, through to putting them at the bottom of the garden! Even a few minutes is, techncially, letting them cry and giving them the chance to fall asleep withut other props.

From my own practical (and hard) experience I know that even leaving DS to cry for a couple of minutes in the early days was absolutely more than I could bear, but I also know that giving him the chance to learn how to settle himself was, in the end, one of the best things we did for him (and, no, I never did leave him at the bottom of the garden!).

There is a huge difference between a reflux cry of pain and an, "oh bugger, I'm awake and I don't want to be" cry. Age does, of course, play a huge part in this as well (though DS was younger than is generally advocated, even where CC is proposed at all)but so does your own instinct of when to wait outside the room for a few minutes and when to scoop him up at the speed of light.

I don't want this to be contraversial at all - I just want to help by putting down my own experience. I know there are many who would villify what we did on principle and I normally stay away from any discussion on the matter because I don't want to offend or upset anyone. I would also have been one of those people who was horrified by the idea. However, I also know that, in our case, dealing with the pain was the first step but then we were not out of the woods in terms of the sleep problems with which he was left - and from which he was suffering horribly. None of us could cope any more. It was a last resort - and only really a step up from letting him grizzle. But yes, I did find it incredibly hard and it did make me feel when I started that I was a failure as a mother (felt that anyway with the PND ).

Long post. Just wanted to explain myself a bit. Bellabear, I'm still happy to e-mail you privately with details of the sleep trainer if you are interested -even for future reference. I do absolutely agree though that controlling the pain is at the root of the issue - everythng elae is dealing with the aftermath.

As for the PND (which we have not really talked to you much about). That also gets better I promise - for me it was like a dense black cloud gradually fading and lifting. Took time, but you do get to feel human again - you just need help, support and as many hugs as you can get. Keep talking it through -even the bleak thoughts. You are not alone in them and you are a great mum who WILL feel joy again.

Sorry, typing crap in that last post! hope it was legible.

Elffriend - thanks for that post. I do understand what you mean by the continuum. I also think my HV has very little idea about reflux. There certainly is a difference between reflux crying and sleep grizzling - the main one being that reflux pain is only briefly eased by eating and then will start again, sometimes while on the breast. He has had quite a bit of this in the last two days. I am telling myself that it is meant to get worse before it gets better, it is so hard when all you can do is carry him around upright trying to soothe him, which really isn't that effective.

On the plus side, he slept for four and a half hours straight last night, in his chair. (He then didn't sleep for longer than thrity minutes at a go for the rest of the night but there you go!)

Any tips for making sure he gets a decent feed before falling back asleep? He tends to spark out again after five minutes. Then we put him down and ten minutes later he's awake again, but try waking him up or burping him in that time and no luck!