Oh sounds like you are doing it pretty tough, big hugs to you.
My DS had bad reflux with grumpiness, sleeplessness and crying being the main symptoms. He however, when at his worst, was on a higher dose of Losec - I think 10mg in morning and 10mg at night. He was probably around 2 at that stage.

Do you think you could try and swap the morning dose to the evening to see if that helps the screaming?

Just an idea. I hope you get some answers/results soon.

Actually Erin has a point with switching a dose around.
Nicholas had problems with reflux causing vomiting in the early hours of the morning several times a week. Poor kid would wind up asleep and exhausted, lying on the bathroom floor beside the toilet.

So after many trips to the GP who couldn't come up with anything but reflux as he'd improve dramatically later in the morning and eat breakfast happily (those were the days!). It got to the point where I had to tell his teacher to ignore any comments from him about vomiting in the night as he actually didn't have a bug - had to get the GP to back that up too as he had missed a bit of school.

We put him back onto losec and we saw a slight improvement - enough to confirm that's what we were dealing with. I, off my own bat moved the dose from morning to night as early morning hours were where the trouble arose and bingo - vomiting episodes reduced to about once a fortnight. Still way too many and the reason we sought a surgical opinion but big improvement.
Maybe a late afternoon dose to make bed more comfortable?
Check with your doc but our's was happy with the switch as it made sense to target the worst time - and we had clear evidence it worked for Nicholas! Everyone's different and Nicholas was around 5 yrs old but something else to throw into the mix.

Have got the GP to refer him to the child development team at Welling ton hospital. He said won't hear back form them til next year which is fine by me.
Arlo has recently started going down to sleep fine again as he seems to have forgotten his ordeal at the hospital and not so stressed. Wakes a lot crying and upset. If i get in quick he will fall straight back to sleep and if I am lucky for a while( hour or so) Trying putting him in with his 4 year old brother tonight in case it is just night scaredness tonight. Also gave him his first dose of slippery elm. Mixed it into his custard tonight.Will keep at it til I know he is pain free. Surgeon was adamant that the risks out weighed the benefits. Got to go back when he is older if still a problem. At leas the meds are working during the day now.

Are you a GRSNNZ member? We have local support groups throughout the country that are run via private Yahoo mailing lists. You can talk to others via this, or set up phone contacts or meetings.

Our bodies also make natural Melatonin in response to darkness so it is really important to not use light when you get them up at night and not to use a nightlight or even a digital clock in their rooms.

Gem has been on prescribed Melatonin and has found it really useful for establishing a sleep pattern. Once a pattern is established they may no longer need it.

I second waking at night is more than often not beavioural in our children with reflux. If you think they are in pain, they probably are and once that pain is dealt with sleeping will improve. At age six years, even when Gem managed to sleep through, her bed was a tip in the morning due to her restless sleep. After her surgery she slept better and her bed was quite tidy.

He wakes constantly throughout the night. I sleep with him lots as it is just too many times to get up and screams so much he wakes his brothers. Tried letting him grizzle though but now he gets up out of bed to find me. The other night he wimpered all night and was definatley in pasin but ca't ell if it is to do with first introducing this Slippery Elm then taking him off thinking he had a tummy bug and taking him off all dairy which I do anyway with tummy bugs for him and deciding to keep with it as might as well check that one out too. Think he is either sick or the soy milk is really having an impact on him system. He has seroiusly yellow chunddery poos and isn't eating much at all. Loves the soy milk so that is a bonus.

Amy - if he's reacting to dairy then he could quite possibly be reacting to soy as well. Thomas is allergic to both and it seems to go hand in hand frequently.

Something like 60% of those allergic to cows' milk also react to goat but that's a possibility - or rice milk.
Thomas point blank refuses rice milk and loudly announced to the paed he won't drink it as it tastes like vomit and he had enough of that with puky burps - the joys of not getting his reflux dealt to until 4 yrs old...but I can cook with it for him.

But both might be worth a try. Thomas actually reacts faster to soy than dairy.

Sounds like pain or something going on rather than behaviour. If he is drinking lots of soy milk that could be the issue.

Didn't seem to be any worse last night but definitely not well during the day as he is off food again a lot.
Was doing well during the day he had started to talk too and just plain mumble nonsense which he has never done before.

Seriously smelly farts and poo and bright yellow a lot now.

When I did a little trial with him ages ago to see if he would even eat a dairy free diet he was happy with rice milk. I was avoiding soy due to that link between the female hormones etc and soy and boys. In case I need to put him on it full time. He is just 2 now and I think if I give him rice milk I will have to put ground up almonds in everything as his diet is quite restricted already due to his fussiness.
Will finish up the soy milk I have and make sure not tummy bug and if still funny will start him on Rice milk see if there is a change.

You can use rice milk enriched with chickpeas. You could also consider almond milk which is available through most good health food stores, or oat milk for that matter (but if this ends up being a gluten issue that might muddy things a bit). DS showed good improvement on a dairy free diet then slipped back again due to the soy and then really improved when I went to ricemilk (breast fed at the time).

So day 9 came and I can't believe it he slept through! Well he went to bed easy at 7.30 then woke at 11pm. I sleepily quickly popped in and gave him his dummy and then not a peep til 6 am. That is sleeping through in my book and he has only done it once I think in his life. Well twice now.
Next night he was a pain again ended up sleeping with him buit not til 4.30 am.
Next night and night after only woke twice and for normal things like being stuck with his legs down the edge of the bed and lost dummy.
Usually wakes with dummy in screaming and now it is more of a grizzle. Peeked in to him and he seems quieter. Always had a bit of a breathing noise but not now. Also seems more peaceful and much less restless in his bed. Sleeping deeper?
This morning he woke up with a small grizzle at 7am! Couldn't believe it really then he came in gave me his blanket to disentangle from his train wheels then tottered off to watch TV with his older brother. Older brother had already woken me at 6.30 to tell me that Arlo was still asleep I don't think he could believe it either.

I have had more sleep than I have had in years.
Presumably this means he reacts to dairy?

So I am a convert. Really didn't think it made any difference at all but if this is what it takes to get him pain free and sleeping then I will do it.
Obviously need to wait the whole 3 weeks to get a complete picture but I think it is working and I have also proved myself right that he was in pain all that time anyway!
He liked the Vita soy extra calcium and constantly helps himself from the fridge but hates the Sig range organic soy! Won't drink it even with Quik in it! Poos less yellow but still a bit smelly. Not sure about soy intolerance or not. He now tells me about his poopy nappy with uncomfy gestures and he never did before. Also is uncomfortable just before pooping so think his stomach is adjusting now as he has started eating again.
Refusing ricemilk at mo. Will carry on with the soy and try and swap ricemilk in there a bit. Also bought Almond milk but very expensive as is the pretend cheese but I am learning. Lucky I love to bake and experiment!
Any Dairy free ideas appreciated. Have read the list on here but isn't there some unusually phrase things I should be looking out for on ingrediant lists?

If you check out the allergy forum at the top of the forums list there is a recipes topic there. Also Allergy NZ website and their facebook page has some recipes. You could also get the Allergy NZ Cookbook out of the library - it has plenty of DF recipes. I'm pleased you're getting more sleep and your son is feeling better - long may it last!

So we hit the 3 week mark Dairy free but in between my last post and now he had a stomach bug. We all had it. Very quickly and in succession over a week. He is not sleeping again. Eating is negligible. Didn't eat pasta tonight even. Lived on pasta.
Guess I wait another week to see if it will pass and then what? Do I assume it was a co-incidence after all or carry on with the dairy free? Do I move onto soy free?
God what a night mare that will be. He eats only a few things and they all have soy in them. He hates rice milk even with pink stuff in it. Loves the vita soy though thank god. He isn't even all that interested in the special choc chip dairy free biscuits I made him.
Maybe he can live on chips and bits of chicken? Home made bread and honey? He loves Marmite and I guess that is choc full of soy like everything else.
Damn it.
I have been reading Eleanor's blog and I must say as at least he is solid. I don't have to worry about him losing weight and being tube fed but I just want him to be normal and eat and sleep. Amazing what we wish for isn't it? Normalacy. Other people want brilliance and extra ordinary. We want normal for my kids.