'Our story' - how we finally got through the hell of sleepless, unsettled baby!!!!!!!

[pevie]

Hi all, am posting cos is start of new year and am feeling magnanimous so wanted to share our story in hope it will help someone else!! Also wanted to give something back for all the help we received on this site when we were literally going through hell. For those who are still around who helped out, you might recognise our story.

We were those parents who had a baby who spent a large part of their day unsettled, crying and generally seeming uncomfortabe. She also spent most of the night waking up and squirming about in pain!!! We were initially told it was 'colic' and then when she passed 4 month mark, it was labelled as 'reflux' and we were given medication for this. In the end, this didn't help at all. Over the course of the first year we tried, medication, cranial osteopathy, an ambi baby nest, chiropractors, chinese massage, dairy free diet, homeopathy, any and all colic cures, trips to hospital!!!! You name it we did it and yet by the end of the first year, we were still in hell!!!

Our breakthrough came in two ways. The first was a 'Sleep Lady' based in Edinburgh who helped us through a very, very gradual sleep programme. Although my LO still seemed uncomfortable, I learned a method to help get her off to sleep without rocking or feeding (and just incase you're wondering if the sleep problems were all down to us, DD 1 was a fine sleeper and we had done all the recommended things with DD2, including one hellish night of CC which will live in my memory forever!!!!!!) This gradual withdrawal method took 8 weeks in all and it wasn't easy but eventually she allowed us to cuddle her and leave the room and I stopped feeding her completely in the night. As you can imagine, she now only woke once or twice at night at the very most, which was a big change from about 6 or 7 times. She also started sleeping through the occasional night. By this time, she was about 15 months. It felt very long and very painful at times, but the support of the sleep lady was invaluable because I really don't think I could have done it on my own. If things went a little wrong she was always on the other end of the phone. It did cost obviously but compared to all the money we had spent on all these other 'so-called cures' it was definately worth it.

The second breakthrough came, when I asked my GP to recommend us to another consultant at the hospital. The first one we saw had no experience with gastroenterology at all, so we were then given a paediatrician who was a specialist in this area. He recommended a biopsy to look at whether she was still experiencing reflux and look at whether there were any other obvious signs of allergies or intolerances. The initial results came back negative for nearly everything, but then a month or so later, he told us that she had a very specific intolerance to a number of sugars, including sucrose and maltose. The poor soul had been experiencing significant discomfort not only potentially from my breast milk, but from all the fruits and veg you naturally give a young baby!!! We had noticed her symptoms getting a lot worse when she was weaned on to solids. So we were assigned to a dietician who helped us change her diet. it didn't cure it all, but it certainly helped a lot!!! She no longer spent all day and all night farting away!

The most recent update is that my LO is now 20 months and she is the most gorgeous creature!!! I spent most of her first year regretting ever having a second child, I was so sleep deprived and she was so cranky!! And now when I look back it breaks my heart. she now sleep through the night most nights and has even started to go until half 7 some times (which is a miracle, cos even when she started to sleep through initially the latest we got was 6) We now have the occasional bad night which she can tell you about, cos her favourite words are pump and poo so she'll say ' ouch,need poo' or 'sore, pump'

Anyway, not sure if anyone will have made it to the end of this war and peace novel but just wanted to share and give some of you who might be experiencing a similar thing, some hope. Feel free to ask questions about the details of sleep lady or sleep programme or sugar intolerance.

A good, restful 2009 to you all!!!!!

awww that's such great news pevie! i remember your story well. i did post a couple of times as my ds was a miserable, uncomfortable baby in the day but miraccullously slept so well at night. i am so pleased things worked out so well for you all. i hope the memories from that first year soon fade and you can get on with enjoying your happy little girl. well done for surviving, it must have been heartbreaking!!!

Thanks meandjoe and thanks for all your support at time, can't remember all who helped but hopefully will recognise names if they come on.

Mumsnet is such a lifeline if you're going through this. Feel a bit ungrateful cos when things started to get better I stopped posting, so hopefully it can be my turn to be supportive!!!

That's fantastic - well done!

Hope people haven't been put off by length of this!!!!!! Would really like to give some poor soul out there some hope! Will check back tomorrow!

Just checking back, seems a bit quiet just now. Everyone got the back to work/school, etc. blues???

So you did controlled crying and then discovered the child was ill and your pleased with that result
I think the lesson there is check everything first before resorting to that "method"

OHBollox, can't believe you just posted that!!! We tried it for a brief time one night on the advice of our Health Visitor and GP as at that time there was no evidence that she did have any physical problem. We gave up very quickly when she got so upset.

I am shocked that someone could be so judgemental. We were obviously really upset that we had even tried it and never did again!!!

Please don't come on to these forums to judge people. I was hoping to give some other mothers who were having a terrible time some hope that things can get better and now I'm simply left feeling really upset at a careless comment by a judgemental...!!!

I'm sorry I came back on to mumsnet now really!!

that was really unfair OhBollox - why post a message like that?
don't be put off pevie. the thing i've learned about mumsnet is that in amongst the thousands of really lovely supportive people there is occasionally some holier-than-thou unpleasant type who seem to take it upon themselves to judge how other people choose to deal with the challenges of parenting...i've no idea why they get a kick from this.
how OhBollox can possibly think it's appropriate to criticise you for trying any loving method you saw fit to make your little one happier and more settled during what was clearly a horrendous time for all of you is abs beyond me.

ohbollox was that really neccessary??? the op has been through hell and back (i know, i read every anxious post and desperate pleas for advice). totally insensitive for you to post that, not even relavant to the thread at all. the op was desperate and was following advice from professionals. she had had her checked and tried reflux meds so as far as she knew she could do no more. jesus christ some people are impossible. you did the very best you could pevie and have nothing to be ashamed or regretful of. you put up with far more than most would, month in, month out. chin up eh?

and by the way ohbollox, your should be you're not your. xxxx

Thanks for support. Touched a raw nerve really cos my DH and I still feel upset sometimes when we think that she was in pain sometimes and although we knew deep down that there was something wrong, when all the medical professionals keep telling you that there is no evidence and they can do no more, you do start to doubt it.

Anyway, am pleased that we pushed for a second opinion and found out what was bothering her. Also, its really hard to know what to do for the best as you know they are so tired and miserable too, and you think if you could just solve it, it would make their life much easier.

I just wanted people to feel that even when you think you have tried EVERYTHING there is still hope that you might find some kind of solution, in our case gradual withdrawal method for sleep and a caring paediatrician!!!

Thanks again for making me feel a bit better. Will try to ignore those who are holier-than-thou!!!

Didn't see your threads before but just wanted to say well done to you and your dh for getting through it, and for pushing for more answers.

There seems to be more intolerance of certain foods yet less knowledge about these intolerances at the same time.

Don't beat yourself up about the CC thing, or looking back and worrying, you did the best you could with all the advice you could get.

The sleep lady sounds FAB

And I hope your DD2 continues to thrive and bring you joy! (and hopefully grow out of her intolerances).

Just goes to show what rubbish Health Visitors and GP's spout at times doesn't it.
Glad you only did it the once though, it really winds me up when people post what a wonderful solution it is but I obviously got the wrong end of the stick on this occasion.

OHBollox, glad you realise you got the wrong end of the stick but I would still be worried that you would come in with that attitude to someone who genuinely wanted to do CC and it worked for them!!!

You are entitled to your opinion about whatever sleep methods but it was the tone of your message that really got my goat. It was both rude and patronising, hope you will think twice before judging others!

We are all struggling to do what is best for our children and we need support not judgement!

CC is an appalling method of sleep training and I will point that out to anyone I come across if that's alright with you, as you say we're all entitled to our opinions and 15 years ago putting a child to sleep on their front was the norm, we all now know that is harmful.

I remember some of your posts pevie (I recommended the dairy free diet). Glad that you found the cause and a solution. It's one that even I have never heard of before.

fantastic news pevie...sleep deprivation is the absolute pits am so glad things are better for all of you...

she is lucky to have such a resourceful parent!

Hi, remember you cantsleepwontsleep, thanks for support. Yes, dont think its common and reckon we just got lucky with our paediatrician, although think time will hopefully help!!! How is your situation now?

OHBollox, still don't think you have right to judge!!!! Just cos you think its harmful, doesn't mean it is!! Anyway, wasnt point of post, so I'll leave it there!! Just glad, people are generally supportive!

My dd outgrew her milk intolerance at 20 months pevie, but I now have 12 week old ds who is also milk intolerant, so I'm back on a dairy free diet again! At least we recognised the symptoms early this time, so no-one suffered for long.

I'm really pleased that your dd and the rest of the family are now getting a decent night's sleep

I would like to ask, however, whether looking back over how things developed do you think that with the breakthrough in the gastroenterology dept. the sleep lady might not have been necessary? Do you think that the sleep lady was possibly more of a reassuring presence to you and your dh rather than a 'cure' for your dd's sleep pattern.? Do you think it might have been possible that given the length of time that elapsed, your dd might have been maturing enough to sleep herself once the intolerance issues had been addressed?

I am only asking these questions as it would be a pity if desperate parents paid out money they could ill-afford for the sleep lady and a sleep 'cure' when really what was needed was the passage of time or even as in your dd's case, a good investigation as to whether there was a medical problem.

I do think that it sounds as though the sleep lady was a good support to you in your situation as it seems the hcp were missing what your dd's problem was. As you say if they are telling you that there is nothing wrong when there is then there's not much more that you can do but keep insisting. It's such a pity it took so long for them to get to the root of the problem but at least everything is sorted out now.

Sorry not on yesterday as had really bad night, night before. DD2 seemed really sore with wind and up for ages, but is first time in a while so hopefully will be ok.

Cantsleepwontsleep, I admire you for going through it all again, though as you say hopefully wont be so bad this time, given that you know more about it. I'm glad I had all these problems with my second rather than first as I would probably have been scared to have a second if had happened other way round.

Juule, i think maturation does come into it, but I do think if we hadn't changed our method of putting DD2 to sleep, we would still have been having problems now. Even with finding out about food problem, it doesn't get rid of it, it just lessens the symptoms a bit and you have to find ways to manage it, so we definately needed a way to help DD2 to sleep. Although feeding her in the night seemed to put her back to sleep, she would wake up about an hour later sore and uncomfortable as it would give her lots more wind, so we needed to find a very gradual replacement for both feeding and rocking. I really believe that although we sometimes think we are helping them by feeding them for some babies it can make them worse.

Also, given how down and hopeless we felt, we definately needed someone to help give us very practical support. At the time, the paediatrician recommended Sleep Scotland, who are a charity and you don't need to pay for them. We did use them too and they are lovely, very helpful people, so that is another option. However, at the time of using Sleep Lady we were still on their list and also they can't really give you the same level of intensive support.

I would say if you can afford it, by all means pay for a sleep consultant, who is very professional and gives you lots of time and support. I also think in our case, she hit the right level of supporting and pushing us a little, which we needed. However, if you can't afford it, then Sleep Scotand can help if you're LO has some type of additonal support need (health or learning) not sure if there is an equivalent in England. Or read Millpond Sleep Clinic book which is very helpful or try and speak to some sympathetic HV or GP or psychologist or whatever, but whatever you do, get help, because severe sleep deprivation over time makes you feel slightly mental. I thought I was going off my head and I'm pretty sure I wasn't a great parent to either of my girls.

Getting some sleep has transformed our lives!!!! Again, thanks for support.

Pevie,did your dd ever have trouble pooing? DS2 is a very cranky baby, and seems to have real problems pooing.Just wondering if this could be a symptom of an intolerance. He generally sleeps OK at night though, unless he's teething or ill. I'm trying to find a reason for why he's so darned cranky for most of the day!

this 'sleep lady' does she have a website address? sounds great. or does she know anyone who does this kind of thing in plymouth?