So we just got the results form Arlo's scope and Biopsies and apparently he has nothing! No cell change not indication of burning in his esophagus and not the other thing ( which I can' t remember what it is) that they were looking for either. Well thank god he now isn't in the running for a rather nasty op but still what do I do now?
Apparently he still has reflux but not bad enough for the risks involved with a op. He is on 5ml Ranitidine twice a day and 10mg of Omniprezole early morning. He is at the very top of what is medically available to him and since about week 2-3 of taking the Omniprezole he has been much much better during the day so at least I know it is doing something. However he is still screaming at night. The surgeon has recommended a behavioral pediatrician for this and his slight speech delay. I expected we would have to go down some sort of behavioral route but was wanting the pain sorted out first obviously.
I wonder if we had taken him off the meds before the op if there would have been a different result?
He says there is a chance it could be wrong but we wouldn't be doing anything else surgically till he was 3-4 years old.

I don't think it is milk allergy related as he has no physical signs of that and he does with other food related intolerance's like Fejoas and possibly Globe ardichokes ( new) in that he has rashes and funny poos etc.

Does anyone take slippery elm out there as well as medication? Does it interfere? Should they be taken a few hours apart? Was thinking of giving it to him before bed and stay with the other meds as they are making a difference.

I thought there was an end in sight now I can see this going on for a couple of years or more. What do you do?

I can recommened a private SLT in Akld (not sure where you are?) who our Gastroenterologist referred my then 3 yr old to for behavioural eating issues following his gastroscopy/biopsies, which showed 'mild chronic inflammation consistent with reflux'.
We were advised to take him off his Losec for 10-14 days before the scope and his appetite stimulant for 5 days (something to do with the anaesthetic).

We thought his pain was still the problem around eating but she diagnosed it to be purely behavioural - a bit of a shock for us... we then had to stop making 'excuses' for his bad eating behaviour and she devised a strict routine/plan around food and mealtimes for us. Within 3 weeks he went from never putting any food in his mouth and unable to use a spoon at age 3, to feeding himself, meal times went from an hour plus to 20mins etc etc. She then referred us to an intensive 'feeding play group' run thru the public hospital where they did things around new foods, he had to eat a 'therapeutic meal' with other kids with behavioral feeding problems etc. These are run 2 -3 times a year.

Anyway - if you want her details let me know. It was expensive but honestly the best money I've ever spent!

Sorry just re-read your post and is it the screaming at night that's the behavioural problem (not eating)....? in which case my last post won't be of any help to you sorry!

That's ok. Yes it is screaming full stop, especially at night. We assumed it is related to pain but I guess maybe not. Food is an issue but more on the side of fussy due to certain foods making him gag and vomit but he eats a fair amount and isn't wasting away.

Don't rule out milk allergy without trying it. The gut reactions are often delayed and don't cause a skin reaction as well. Bowel motions may or not be affected. Gem had no noticable bowel motion alterations but her reflux improved remarkably at ten days dairy free (breastfed).

Slippery elm doesn't react with medications and was great for Gemma for bloating and constipation, and therefore helped her reflux as well.

Can you PM me his weight please?

Hiya AmyNona,

my DD had symptoms like you have described. Constant screaming at nights etc. Was doing our head in. Turns out it was soy that was the problem. She can tolerate small doses but in a quantity, it really flares her reflux off. It causes her irritable bad behaviour. Did the same for my DS. Didnt cause you typical allergy symptoms. These nights we give her a dose of gaviscon and it seems to help heaps. She is currently on 30 mg losec a day.

Was just a thought.

Sorry, should also add here that she has had her nissen, this time last year. Reflux came back so we also fel like we were back to square one as well.

Can I ask. How big is your daughter because I am told that the the 10mg of Omniprezole (Losec like) a day plus his ranitidine 10ml a day is at the very top of what is medically available to him and he is 15 kg which is pretty big for a just going 2 year old.My four year old is only 16 kg and he isn't small for his age.
Seems alot of other kids are on a lot more.

She is about 13 kg last time I weighed her and 2 1/2 years old.
In June this year, the paed put her on 40 mg - 20mg both morning and night but I buggered up the instructions and gave her only 30mg. But we found this was making her stable (still has bad downers but we medicate these days with gaviscon - as and when needed)
She was on the smaller side but we have noticed that she has really started to "pork" up over the winter.

We have put that down to getting her meds right finally and now she seems to be thriving. She is still on her neocate and the dietician doesnt seem to want to take her off that. Mainly due to her many food alllergies as well.


I am really unsure about the dosage levels of ranitidine and losec, if given as a combination.
Can you phone another pharmacy and ask their advice on dosage levels?

The two meds don't have any problems with each other and so full doseage is fine but the GP and the Surgeon don't want to put it up. The doseage chart on COSP says he should be on 10mg.
My husband takes 20mg so I can see why but not sure what to do. Am looking into the allergy thing and possibly slippery elm. The ranitidine has worked well enough for us but the last month with the Omniprezole he has just been that much better during the day. Everyone has noticed it. However the GP thought I was probably wasting my time with it. I am not sure the Doctors really know what they are talking about!
As the scope showed no burn etc then I guess it could be just behavioural as surely the pain would have been caused by burning?
Sad the Nissen didn't work for your daughter. i was hoping it was going to be a miracle cure but not to be.

I think the hnissen did work to a degree and she also had a hiatus hernia that needed to be fixed at the same time. She is settled at the moment so thats all we can hope for

I would suggest going to another gp or even a paed for another opinion. If your DS is really unsettled then I would suggest his meds and /or the cause is not right.

Do you have the option of seeing someone privately?

Yes we saw a private Paed who specializes in reflux and he agreed that it was not being completely settled by the meds and he referred us to the surgeon. Now of course I have to go back and he said last time he wanted to reduce his meds not up them as his Ranitidine is actually 2 ml per day higher than it should be but when we did it turned nasty very quickly. Hence why we ended up at the surgeon.
He is ok at the mo during the day and starting to eat more and better so I will treat the night thing as if it is a regular non reflux child and just try and get him to start sleeping while I wait on the behavioural Paed. We may do a dairy free trial and then poss a soy free trial. Also I wan to try this slippery elm powder. I feel like I am back with my first refluxer when I thought if I tried everything then I would suss it out and it would go away. I later realised to a certain extent you kind of have to give up or give in really and just wait it out. I am not the most patient person!

I just found some information that says that slippery elm can reduce the absorption of medications.

I understand where you are coming from in regards to the night waking.
I think DD was so settled in a pattern of night wakings due to her reflux that we had to retrain her system in regards to sleep patterns etc. We tried everything, and I mean everything.
I would reccomend tart cherry as I do think this made a real difference to the sleeping patterns. Expensice to initially buy but lasts an bsurdly long time
I will have to some of my own research on slippery elm as that is something that I am unfamiliar with.

Where abouts in NZ are you - do you have a good support group to go to ?

Never thought about a support group but I have a great group of friends through Playcentre. What is this tart cherry? Never heard of it. How do you use it?
I am trying to not end up sleeping in with him and have managed almost 2 nights. Gave up at 4.30 am this morning. Will keep trying. Also I think the dummy is now a problem in the sleeping side of things. My other kids gave it up voluntarily but I will start to wean him off it a bit. Am hiding it during the day. The paed said it helped with the reflux as he was swallowing all the time with it so we have let him have it all the time for about 6 months now. Probably not the best decision as he is on;y just now starting to speak.

Sorry for late reply.
tart c herry is a natural cheey extract, you get it from most health shops and some chemists. Has to be kept in the fridge. It has a natural melatonin chemical in it that helps support and regulate the sleep cycle. We just syringed it into her - in her nightly shower as at the start it got a bit messy till she clicked on that it was good for her !

How have the past few days been ?

We use slippery elm, we just make sure to wait 30 mins to an hour after any meds, to give them time to work. It has definitely helped in conjunction with Losec. I also give it to my daughter if she is having a bad night & it makes a difference.

Thanks for that Chri. I am off to buy some today after checking with my GP and he confirms about splitting an adult dose would seem sensible.

Still rubbish sleeping. Has started to sleep at more appropriate time during the day except he fell asleep at 10 am yesterday! Had to wake him to pick up my 4 year old. Better than falling asleep at 2 or 3 then waking up 3 hours later. Tried being tough with the night waking but he has decided to get up now and find me then it is even harder to get him to go down again.
Will go have a look at this Tart cherry. Probably best to try one thing at a time so will have a go at this slippery elm as it is for stopping the acid burning so prevents pain. If that doesn't work then I guess i have done all I can for the pain an try thei Tart cherry and assume he has just developed bad habits.
GP has referred him to the child development team at Wellington Hospital. Will take a while which is fine as he has only just hit 2 but at 2.5 I will be a little more worried about the speech development and sleep issues than I am now.

Big hugs sweetpea, it is a super hard road you are traveling.

Everyone has different ideas about night wakings and what is or isnt a bad habit. after 2 years we finally had DD reflux under control so we know its bad habits. We seriously tried evrything to get her to sleep, even had the house exorcised! In the end the only thing that worked for her was letting her cry it out.
Was had for the first couple of nights but the crying periods got shorter and shorter untill they finally stopped. Now when she wakes in the night, we actually know that there is something wrong.

Let us know how you get on with the slippery elm

Amynona,

Sorry late in on this.
BTDT with this particular guy and T although he never suggested a behavioural paed, just not bad enough to operate yet go back to meds and see me later if symptoms persist kind of thing.

Where it comes to sleeping I think you really have to be sure it's not pain before you cry it out - usually and esp with an older kid you can tell the difference though.

Because I held all our kids upright after a feed when they were little they learnt to go to sleep in someone's arms and then you very very carefully moved them to their bed. We did have to do a cry it out kind of approach to teach them to go to sleep in their own beds from awake but didn't until around 6 months old once we knew we had the reflux under 'control'. You should get a progressive, night by night improvement if it's re-training that's all that's needed. I did a come in, pat on back but don't pick up, next time come in and speak but don't touch etc kind of thing and then gradually lengthened the time I'd wait until I responded.

But even with self-settling well Thomas would wake at least nightly if not multiple times a night. If he didn't wake I still did because he'd be crying, with tears, in his sleep and wake me.

Once we'd dealt with surgery recovery he slept through with no training whatsoever. So def not a behavioural problem.

Maybe talk to the paed and see if he can explain clearly to the surgeon there is nowhere to go with the meds?
What's the waitlist for Puketiro these days? I know when T had SLT through Special Ed we were on a waitlist to be assessed and from there a 6 month waitlist to actually start SLT. T's therapy was through Education though. If the paed writes to Child Development as well you might get through the wait a little quicker - sometimes it's a matter of just squeaking more than others to get what your kid needs.

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.