YM - Just an off the cuff kind of thing - depends on the history and the requirements of the surgeon as to what testing they do prior to surgery.

Nicholas had a barium study done prior to surgery but that was all. Just checking that it was all formed correctly inside.

Thomas had a gastroscope done with biopsies to rule out EE and then a pH probe prior to surgery but he'd had a barium study done at 3 months old so the surgeon simply reviewed those.

With William he did a gastroscope and biopsies just to be sure and reviewed the old barium pictures which had been done over 5 yrs ago.

The barium will rarely show actual reflux so it's really only to give them an idea of the structures in there.

The pH probe has a fairly high false neg and esp in kids who are largely formula fed as the formula/BM is alkaline and has shown to have a coating effect for up to 30 mins each feed.
Thomas was apparently negative on his pH probe done at 3 months old - but they did acknowledge that it also wasn't done correctly.
His probe aged 3 1/2 came out with what they described as mild reflux - although the little booger pulled it out after only 15 hours and before his worst time of the night.

On the basis of the probe our surgeon said he wouldn't recommend surgery and we struggled on for another 6 months or so until going back.
The first thing the surgeon said post op for Thomas was "Boy he needed that!" He was actually ulcerated inside from the years of reflux.
After William's surgery and finding he was much worse than testing had led him to believe he said it goes to show how crude the testing actually is.

So I wouldn't put all my faith in the testing after my experiences!

yep eleanor, i hear ya on the testing side of things. i've been there done that with not only the 2 kids i looked after, but also my own son who at his worst took less than 200mls of formula a day (4 months old). i guess if it was me facing surgery, i would rather it was all done anyway, just so i could say we had ticked every box possible before allowing an invasive procedure iykwim. then, i would weigh it all up with the big picture.

dolphin, i think it might be necessary for you to try and organise a phone conference between all your drs. do you think that might be possible? or at the very least, take all your notes with you today so the new dr can go through the previous dr(s) assessments etc.

Oh yeah understand that totally YM!
I guess the big diff with my guys is that they were also so much older - plenty of time to grow out of it, could tell us about how they and it felt etc.
We certainly sat, waited, tried everything with Thomas before pulling the big guns - which probably should have been done a year beforehand.
But I agree - it has to be last resort.

hi gals, your support is awesome, it really is.

Well had two good appointments today. Got one diagnosis, and a heap of tests. Claire had her appointment with a different specialist at the same time as Jess and has been officially diagnosed with Aspergers (sp??) so we're getting heaps of referrals to a number of people in different areas at starship to help us with this. The diagnosis was a relief for me, knowing that I wasn't trying to talk up the difficulties we've been having, and the knowledge that much of her behaviour has a REASON behind it, that it's not just normal preschooler/toddler stuff. Next step is looking to how we can best support her.

Anyway, that's the other child. Jess's appointment was WONDERFUL! It was with a new paed - not a specialist gastro or allergy paed, just a regular paediatrician, someone who can look at the big picture and coordinate everything a lot more. I just about burst into tears when I left, with the overwhelming feeling that someone was finally taking me seriously, and agreed that the time to sit around and wait is long gone!

We're just going to keep trucking on with things the way they are at the moment, just until we get more test results back and have a better idea of what is or isn't going on. He was very concerned at the low levels of food and formula intake she's on at the moment (YAHHHH!!!! Someone who thinks it isn't fine!!!) and his initial response is that it's nowhere near enough nutrients and she's very slight. We weighed her, and she's dropped 200grams this week, but at least she's grown in height in the last 6 months. She's now 103cm tall! SOOOOOO tall for her age, but very skinny at 13.5kg - but then she's heavier than Claire! He wants all the data I have of her weight tracking since birth, so that he can look at the graph in total and try to identify when things changed. He is quite concerned that her weight has dropped from being over the 50th percentile in her first year to under the 25th percentile now, especially as her height has remained between 75-90th percentiles. So at least she's still growing heightwise, but he's concerned with the weight.

He is quite happy with us having been thoughly assessed for allergies, and said that she obviously isn't having a antibody reaction, and is instead having a cellular reaction to foods, which are harder to diagnose. But that said, he actually wants to DIAGNOSE jess, and together with the new gastro-paed we'll see in a month (she works in the same clinic) he's confident that they are actually going to figure out what is going on with her! I've been waiting for this for some time, and our previous gastro-paed just isn't up to scratch i'm afraid.

He wants to leave her alone for the short term, so that we can get a barium study done, a specialist poo sample test thingy (to look at whether she has specific sensitivies like inflamatory bowel disease etc - it's quite a sensitive test aparently), and then with these results get another scope done. He wants to check that
1) she is still refluxing
2) does she still have a motility problem, and does it happen further down in her gut too
3) is there anything else going on with the constipation etc, that needs addressing.

Then just before the scope, he wants her back on foods for about a week, and off losec for a couple of days, to confirm the severity of the reflux, and to look exactly at what is happening in different areas of her guts and compare this to last time. The previous scope was 2 years ago, so we need to have another look, but also it didn't fully cover the whole gut, and he wants a complete look this time. Hopefully as she'll actually eat before this scope (unlike last one) we should be able to see what effect the food is having.

He wants also to run some other blood tests, to check her kidneys, iron levels etc. So I'm heading back to the gp on monday to see exactly what results have been done recently (so we don't need to redo them). But he's thinking big picture, and wants to check her other organs to make sure its not a problem with kidney reflux, or anything else like Crohn's etc.

Jess hadn't eaten anything yet today by the time we saw him at 11:30am, and when he checked her tummy and pressed hard she had no response except to laugh as it tickled. So he's wondering whether it is still a reflux problem as he would expect given her behaviour (not eating, VERY pale - in fact that was the first thing he remarked on when we entered the room, etc) that if she's in pain from the reflux that it should be tender. It could be that she has a high pain tolerance and an empty stomach meant that it isn't tender at the moment, but given that something is flared up at the moment he would expect tenderness. With her on a high dose of losec, and symptoms still not controlled, he is quite seriously wondering if something else (for example motility issues through her whole gut) are the root of the problem now. He is quite convinced that something is seriously not right with her guts, but he is also very determined to actually run some tests and WORK TOGETHER with other doctors to get to the bottom of it! Such a huge difference to our previous specialist experiences .....

So I'm elated to have such a fab paed on board (and Jess loved him, he is great with kids!) coordinating and on the same page as me, knowing that at least with one doctor I don't have to feel like it's all about me as a mum doing it wrong or imagining things.

So going to take a couple of days now to let the dust settle, get onto the testing next week, and start finding more info on how best to help both girls.

Awesome Dolphin, sounds like a really positive appointment and progress will be made. It must be a huge relief to you.

Wonderful news!
Such a relief!

Dolphin, great news!!!

I'm interested in who the paed, my best mate is looking for a good paed for her dd who has a variety of issues and he sounds fantastic. Is it possible for you to pm me his name.

Great news!

hey dolphin, any update on Jess? have you got any results yet? hope things are moving along for you.

had the barium done the other day, and have now ruled out hernia, strictures etc. And best of all, NO more motility issues!! Which is awesome cause that's a contra-indicator for surgery!!

Seeing paed tomorrow so will get the full report and results of other tests then.

Got two girls on AB's for chest infection/cough at the moment, so we're battling that and trying to ignore the weight loss .... at least Jess is staying hydrated ....

Next step is to book the scope and decide which areas to biopsy. Also need to talk to paed about checking whats going on in her bottom, with the constipation, to rule out a couple of other things.

Had an awesome letter from him the other day, 3 pages!! Most comprehensive letter i've ever had. Awesome!

I'll post some more tomorrow if I get the chance.

Yay Dolphin! Great news!

Thats great news about her mobility issues and great to no hernia. When do you think that they will get there gastroscopy's. I guess they will do the "full works" in the biopsy dept so hopefully they can pin point what is wrong.

Hiya. Just got on the computer finally! Girls all tucked up in my bed, completely knackered. AB's kicking in, but wearing them out!

Paed was good. Didn't have all the test results back (poo test had to go down to Christchurch) so couldn't rule out crohns etc yet, but barium results ruled out structual issues. He's been doing heaps of research to try and figure out what's going on! jess is a "challenging" case. hehehehehehe! Like I didn't know that already!

One issue that's just come to light recently (like a few days ago) is the whole turning pale when on the merry go round and repeated goes on the slide. So one thing he's considering is an inner ear issue like severe motion sickness that repeatedly causes vomitting. So we've got a patch to stick behind her ear and once she's over this bug we'll take her out to a playground with merry go rounds etc, and test if she still goes pale (like sheet white) with this patch on. We're really really hoping that this provides some answers for us! But we're going to need to follow this up with a tilt-table or MRI to confirm that she vomits when moved.

Given this, some of her recent food trials that appeared to work for quite a while before going pear shaped, we suspect that she might actually be ok on some of these foods again, and that the reactions are getting confounded by random movements/playground visits/aeroplane rides from grandpas etc. So we're on a mission to liberalise her diet!! She ate a heap of bread on the way home, and more later too. So gluten is back on the menu as of now, and we'll give it a few days to see how it goes, and then try something else.

Paed's going to find out more about testing and also sort out some special metabolic tests that we'll probably need to do at starship (just cause they're finiky and need the right equipment etc) to do some screening for metabolic disorders like issues with proteins, fructose, etc, and also check on her kidney function etc at the same time (try to get all the blood collected in one test, whew!)

Definitely getting to the hard to figure out stage, so just taking things one step at a time at the moment - firstly test out this motion sickness thing ....

HMMM thats interesting Dolphin hope its as simple as that!!
Good Luck with the food trails.Sounds like you are getting lots more tests with is good.

Hmmm Dolphin - do you remember the weird cardiac things W had going on? The cardiologist said he couldn't provoke it, and it wasn't structural but something was wrong.

Totally disappeared after his fundo surgery. It seems that the reflux washing up and down was irritating the vagus nerve causing his heart to race, him to feel sick and occasionally vomit and go really white, blurred vision, dizziness etc.
Might be worth chucking into the melting pot too. They docs always said they thought W's apnoeas were due to reflux and vagus nerve irritation as well.

Snap Eleanor - I wondered exactly the same thing in the middle of the night. I've just emailed the Paed and asked what he thinks about the idea that the vagus nerve is being irritated by the reflux and causing the pallor and vomitting, so hopefully he'll get back to me this week. I'd noticed a few weeks ago too that she seems to be having more of the signs that she used to get when she had apnoeas when she was little, like turning blue around her mouth, lips and surrounding area for about an hour or so after a bottle. So that would all tie in with an increase in physical movement (slides, tramps, travelling in the car, etc) lately, and a decrease in her bottles, and an increase in pallor, regurgitating, etc that we've noted over the last few months. Would make sense if the nerve was getting increasingly irritated that the symptoms would be getting more apparent and frequent. hmmmmmm .....

The only thing that the Paed isn't sure about (and I'll talk with the gastro-paed late next week) is whether they would be prepared to talk about surgery or not. With all the hard yards we've put in with the food issues, we've managed to "control" her weight gain/losses to only dropping from the 50th percentile to 25th percentile. He's not sure if this is "sufficient" for them to want to go ahead with surgery, cause it appears that they tend to only want to do surgery if there are structural issues likes hernias or if kids need feeding tubes due to having cerebal palsey etc. So I'm a little unsure what else to do if this is the case ....

If it turns out like I suspect that she can't play on swings, slides etc without flaring up her reflux, but we can't get surgery to help her, and more meds aren't going to stop the acid washing back up her throat, I really don't know what I can do. The thought of having to stop my child from doing any kind of moving activities and just keep riding this out, is pretty hard to comprehend at the moment.

I'm quite happy with the making progress with foods stuffs, but this reflux is getting me quite down and frustrated at the moment. I think I just needed to vent and clear my head with all this .... maybe it's time to accept that this is her lot in life? And that we're going to keep playing the waiting game some more ....

as you said kells - both the gastro-paeds we've seen or are seeing work together at starship and probably have the same approach and ideas about reflux and treatment. So maybe that's just the way its going to be.

Dolphin, at Jessica's age Gem still had major problems with reflux with drinks. She had to have Gaviscon in every drink and that included water, as she would choke when drinking it otherwise. Putting Gaviscon in it, helped with that. I know you use Gaviscon and that that then causes constipation issues but wanted to reassure you that as long as we were able to manage reflux very well with medications and diet until Gem was about six years. It was only at that time, that we considered surgery and the paediatrician who was anti-surgery decided that this was our only option. It was him that suggested it first to us rather than us, but we knew there were no more options as everything had been tried.

Now after two surgeries Gem is refluxing again and the extent has only become apparent in the last two weeks. She is not able to vomit properly still although is able to belch bile. Sorry hard to explain but that is what is happening. We tried stopping Motilium and her reflux increased so much that within 24 hours she was needing Difflam spray to numb her throat. Back on Motilium. Phew! She is needing extra calories because she is burning up so much energy with the pain of her current illness, so is drinking Neocate Advanced or Elemental 028, both of which she hates with a passion. She doesn't just hate them because of the taste but because she refluxes so much more with the fluid volume so we are adding Gaviscon to this which helps a little but the biggest help is really time since the last drink and solid food in her tummy.

So keep on getting the solids into Jessica and I'm sure the GORD and all the symptoms that might/do go with it, will start to decrease. The more solids she gets in, the more she is going to grow, so the more she is going to be able to tolerate food. The more solids she gets in, the more her body is going to get used to digesting them. The more solids, the more energy she is going to have to cope. I know it is hard. I was in tears yesterday too but you just have to do what is best for your child and if they won't consider surgery now, one of the reasons other than the reasons you have been told is possibly that Jessica needs to eat. If her GORD is still such a significant difficulty with food and another year has passed, maybe they might consider surgery again. I guess what I am saying, is you have to be completely compliant even if it is hard at the time.

I'm sorry I sound like a broken record. :-) Remember you still have other test results you are waiting on so there may be some other treatment they can offer but whatever the treatment is, Jessica is going to need to eat and this will help decrease her reflux. Surgery does not stop reflux and if her diet is mainly fluid, she may still reflux a lot.

Big hugs

dolphin, if jess is sitting on the 25th percentile when she has essentially been eating nothing (well except milk and a few rice crackers) then imagine what she might do now that she is allowed to eat.
i wouldn't be pinning your hopes on an invasive procedure, i would be celebrating the fact she can now eat food (clearly she can eat if she happily ate the 2 helpings of bread and you said you are liberising her diet now yeah?), try and reduce the milk intake, and you might just find that the reflux settles with the increase in solid intake and that actually she CAN live a normal life for a change.
I know that may sound like its minimising everything you have been going through (i'm not, just trying to look forward not back), but in reading all your posts, it does actually make sense from a medical perspective. and putting her through surgery doesn't really make sense if she has managed to maintain her weight ok, now that she is being allowed to eat more.
I would also be pushing for pysch involvement. to help her (and you) overcome the fear of eating that she may have developed over the years. because if you are introducing new foods (obviously at the new peads advice and he clearly thinks she can tolerate them if he advised it yeah?) then you really want to make sure that you put everything you possibly can into making sure eting becomes a normalised function.
essentially, if it was me, i would be putting all my thoughts and energy into increasing her diet now that you have been given the go ahead to try new foods in her diet. in the hope that the increase in solid intake will reduce the reflux. which in turn will put an end to any of these ??pallor events that maybe occuring due to the reflux. and so on. Then, IF everything is still an issues in say 6 months time (so giving it a really good shot) you can look at getting more aggessive. BUT, you will be doing so in the knowledge that both you and jess, have given it your best shot and done so with the attitude that she can and will eat instead of the attitude that she can't tolerate and won't eat iykwim.

oh cross posting roz. but essentially, what you said!

I think you said it well yodasmum!

Just with the mention of the psych involvement, I don't know if I have mentioned that at 3 years I was almost going to ask for psychological involvement for the tantrums that we had with pain. I didn't know what to do.

With Gem's current illness we now have a psychologist involved. It is nice to be told that we are doing things right if nothing else, and that we probably handled the earlier tantrums okay.