We had a GP visit 4 weeks ago to get a script renewal (including creams) and the GP voiced concerns over his lack of weight gain (as in 100 g in the 4 months since our last Paed appointment and lag in height as well). He sent a referral through the CDHB for a Hospital Paed for a 2nd opinion - wait is approx 2 months.

So, for peace of mind we phoned the Paed for an earlier appointment (just a few months early).

Will is 2 in 6 weeks. He is a small 81 cm tall, BUT he has put on weight! Yay! He weighed in at 11 kg today - up 500g from the last appointment 4 months ago (though he hasn't pooed for 2 days, so that will account for some of that weight gain, but at least he hasn't lost weight).

We shared about how concerned we were with his lack of eating - most days we could get him to eat 2 crust-less slices of bread, and maybe a handful of fruit pieces, and that. is. it. And he's recently rejected some of the few foods I could get him to eat - roast kumara, steamed carrot and chickpeas (he won't eat meat) so I am gutted and just a tad concerned He will generally eat banana or chocolate cake though often only a mouthful and no more. Aargh!

He's on Neocate Advanced - will sometimes take 100 mL before his midday sleep. He has another 100 mL ish before bed, and sometimes wakes in the night and needs another 100 mL to resettle - so that's 200 - 300 mL per day - can hardly cut back on that to increase appetite for solids KWIM?

He's generally a perky wee boy, with a cheeky trouble-making grin. He has his bad days of clinginess and grizzling, which made us wonder if the Losec was dosed correctly (and we had weaned him off Motilium about 6 weeks ago). He's been sleeping well - about 2 hours in the afternoon, close to 13 hours at night (with maybe a wake if he loses his dummy, sometimes needing a bottle to resettle).

As always, the Paed listens to our concerns, and we feel like we're not crazy LOL. He suggested that maybe Will has EE, as some patients he's had have just not wanted to eat as their main symptom. (though in our case we're pretty sure Losec does help him - or at least one day I was out and DH forgot to give him his Losec and I queried if he'd missed it as he was a wreck - that's when DH realised he had forgotten). So we had bloods drawn on our way home (poor wee dude, he did not like that at all!). The Paed did suggest that gluten may be the culprit here (Em is gluten intolerant & has the coeliac gene), but of course we'll wait for the blood results first.

So now to wait for the results. Aargh! I want to know now! LOL. At least I know the Paed is really organised and will communicate with us as soon as he knows more!

Hi Leanne

It sounds like your paed is very understanding, Im glad. Thats great William has had a weight gain. Cassie stayed in at 1okg for so long but now is a healthy 11.8kg but not sure on her height. She is 2 in a weeks time.

What were the bloods taken for? Was it just for coeliac? Has he had a gastroscopy yet? Excuse my ignorance if he has and its been mentioned before...my memory is shocking.

You mentioned that he sometimes wakes for his dummy to be popped back in...with Cassie it was the same and then I went and got one of those chains that clips to there clothes and Ive never had to find her dummy again. It was a life saver and very safe.

Keep us updated on how he gets on with the bloods.

Take care x

Hi Melissa,

The bloods were a range of things - iron & general health, plus the extra markers for gluten intolerance and I suspect other allergy markers? Poor wee man had 4 tubes taken, and he strained like crazy. Tonight in the bath he kept looking at his bruise (about the size of a 10 c piece on his tiny arms) and crying. I just couldn't get a firm grip on his arm to prevent bruising at the end because he was so wanted to be anywhere but there.

This blood test is his first invasive test requested by the Paed. He had mentioned last visit that we may need a barium swallow if things haven't improved for his 2 yo visit (which we had today), but things have changed course now. Given what I've read about EE I'm suspecting that a gastroscopy may be the next step depending on the blood results? (nothing was discussed with the Paed at today's appointment - and I am happy to wait until the blood work comes back to find out what the next steps are).

LOL about the dummy chain - Will usually goes to bed with 3 dummies - one in his mouth, one in each hand LOL. We're down to 2 dummies the last few nights so we're suffering with just 2. It would be nice to be able to wean him off them, but we're a long way off yet. Just the other night I watched him (with eyes asleep) feel around the bed with his arm, grab nothing and put nothing in his mouth, and discover it wasn't right and feel around again. LOL, it was funny. I hadn't thought of using a chain because of the risk associated with it - I suppose if it's short enough it would be ok?

Best of luck with the results!

It is really hard when they struggle to grow.

Let us know when results come in!

No results yet (trying to wait patiently LOL).

Friday I whipped him into the GP as he was wheezing and really miserable. So now we add asthma to his list of complaints! We had been prewarned last winter that he sounded like he had an asthmatic wheeze, but was too young to be officially diagnosed. We were prescribed 2 days of redipred, and a salbutamol inhaler as required. He had a great day yesterday (and ate more yesterday than he had all week). I know prednisone stimulates appetite, I'm wondering if he also ate more because he finally felt good? (I'm not wishing EE on him, but can't help feeling that it could be another piece in the puzzle to finally getting things on the right track to get him eating!). Over the past few days he's been really good at taking the salbutamol through the space chamber - good thing he's so curious about how things work.

Do you think I should email the Paed & update him with this recent info? (not sure if it's useful or interfering?)

Could also just be the connection between reflux and asthma too.
My William's asthma has been miles better since his surgery.

*sigh*

Today we received a blood results letter from the Paed - blood results show not coeliac, but is gluten sensitive (as is Emily so no real surprise there), and needs more iron (have jungamals vitamins as per Paed request at our appointment, so that should help - IF he'll eat those as he stopped eating them when he was sick last week).

So here's where I'm confused - nothing is mentioned about EE and I want to know what the Paed's opinion is now following the tests. I get the impression that the Paed thinks that withdrawing gluten from his diet is going to magically fix all of Will's issues, which is encouraging, but I'm worried that I'll withdraw gluten and find a year down the track that we're not actually resolved all the issues.

Paed put on the letter to book another appointment if we want to discuss it further, or recall for 3 months. And enclosed is a brochure for a Dietician.

And to top it all off, I finally heard back from Southern Cross today and to get Specialist Cover (Wellbeing 2) no pre existing conditions are covered. *sigh*

On the flip side, a letter from CDHB arrived yesterday (referred by GP for a 2nd opinion), we have been booked in for a Paed appointment there for Sept 2nd. As guilty as I feel taking the space, we've decided we're going go to hear what they have to say.

Now to decide whether to keep him on gluten until that appointment or now...

HI Dunners

How dissapointing that your still not at the bottom of his wills problems. Hopefully with this 2nd opionion you might get better help. If I was you I would go gluten free untill you see the next paed. It wont do any harm and atleast you can say to this next paed that you have tried going gluten free and see if its made any real difference or not.

Keep updateing us and good luck with the 2nd. We are off to see out paed again on Wednesday so fingers crossed with that.

We had our hospital paed appointment last Thursday. It's taken me a few days to process it all, and then of course we were hit by the earthquake, so although our suburb escaped with minor damage we've had no power, and dealing with some mess & emotion. Although I know the aftershocks are important to release energy rather than building up to another big one, I am so sick of them! I feel like I'm swaying constantly! Kids are doing really well though, and I'm so grateful we have plenty of food & meds here to fall back on!

So the appointment was, um, well, not what I expected, I suppose. I've walked out feeling that "neurotic Mum" and "fussy eater" had been written on the file. I felt like I must have neglected to have said the right things because it felt like she just didn't get what our struggles were. Take home message was; Will may have had reflux but he's fine now, he didn't need to be on Neocate, I should force him to eat anything & everything, especially cow's milk. And he didn't need to be on asthma meds because there were kids in the hospital with asthma-like symptoms but it was just a virus that made kids wheeze. And he doesn't have EE because he's been on Neocate, Flixotide for asthma and losec (the 3 things used to treat it) the past few weeks and he's no better for it (to which I rebut that we have had a few really good weeks with him on them, not perfect, but good!). And he's not gluten sensitive - his blood results are what would be expected for someone eating wheat products. Argh! Headspin!

We had attempted to go GF with Will, but I cannot get him to eat the GF bread (which I completely understand his refusal), and considering that a wheat sandwich is something he'll happily eat, I'm quite torn about what to do here. He's usually pretty good with eating Em's GF pikelets, so fingers crossed he'll eat those in times when he would have eaten a sandwich.

Last weekend we reduced his Losec to just 10 mg per day to trial - has been on this dose for 10 days or so with smooth sailing, and last night was a bit of a shocker (resolved with gaviscon), but he had also eaten some cheesy corn chips, so I don't know if it was the dairy or lack of losec catching up on him, or just an emotional weekend!

I knew that the hospital paed & private paed would have some conflict of info, but I did not expect it to be SO conflicting (like everything!). She said she'd refer us to a dietician, and will see us again in 4 months (and "I'll talk to the Gastro guy but I don't believe we need to do any testing"). I'm hoping the Dietician will have a bit more of a sympathetic view on (delayed) food allergies & intolerances. We'll be due back at our Private Paed in 2 months, so we sort of have to make up our mind on who we want to "believe in" and continue to see, I can't face up to both (conflicting) views.

So, I'm left feeling guilty that I've allowed Will to become a fussy eater, and that the reactions we see are all in our heads, "he's a perfectly healthy boy, going through a "blip" and as a result is on the small side, no need to worry". Whereas the GP shared grave concerns, and Private Paed acknowledges that he has concerns. Argh!


It's very difficult to challenge someone whom has studied for years, but I can't help but feel that something is being missed. I hope that I post again in 6 months time and I was wrong and he's fine.

In the meantime I need to find peace within myself that I have not done this to him, and figure out what to do next!

*insert tantrum here* LOL!

Hi Leanne

Im glad you and your family are safe. What a scary time it must be for you all.

Im sorry you didnt get any answers with this new paed and I think its terrible that the appointment has left you feeling like its your fault. Dont ever think that and of course its not in your head. I would stick with your orginal paed for now. I cant believe they have not done a barrium swallow already. Cassie had one when she was 9mnths. I think you should see a gastro paed for another opinion. It wont be all in your head. Its terrible that medical professions should make you feel like that. Trust your guts and really fight to get it sorted out.

Cassie went off her losec in july. cold turkey from 30mg for the scope. The scope showed nothing. We had a week where she shocking coming off the losec but after that she coped well without it. Ive now started seeing her reflux back into her mouth with a cough. So we might put her back on a low dose of losec to see if it helps. We have also being giving her a glass of milk a day so could be from that also. Her weight has dropped to 11kg again. She just doesnt want to eat much.

Hugs, I know how lost you must be feeling with this new info. I hope things look up soon. Take care of yourselfr.

Melissa

Hugs for everything going at the moment for you and family,its awful feeling like that when you leave a appointment you had a lot of hope for. What tests have been done? Like wizz said trust your gut we as mums are with these kids 24/7 the docs and paed see them for such a short space of time . Good luck and you are doing a fab job and you are not neurotic mum just a mum who wants to see her son sorted. I felt much the same until we have postive result of mild reflux oesophagitis with the scope and thats with max dose of losec we didnt stop meds before hand. when we were hospital for a few days when she was 6 months paed didnt think she had reflux i followed my gut and pushed,and got results we wanted and i`m the type of person who hates conflict.

Thanks girls, your words have been reassuring!

Today has been a good day - fewer aftershocks so I don't feel quite so on edge (though not a great sleep last night for me). And, just today I was walking through the airport to collect my Mum for her visit and my cell rang - it was the Hospital Paed! She said Will WILL be having a gastroscope done, though it may take a few months. Oh my, I feel so relieved!


ETA: forgot to mention, we've had not testing done on him yet. The first invasive test he's had was his blood test a month or 2 ago - our Private Paed has been very gentle on his approach and not pushed for invasive tests. He did mention at 18 mth old appointment that we may need a barium swallow, but now the thinking is a scope would gather more info (for EE/reflux).

Good news Leanne!
The scope will also give info on the structures inside - just like the barium would have.

Hugs and glad to hear there's a bit less shaking down there!

Awesome stuff,so glad that you are making head way. Glad you are feeling a bit better earth quake wise, hope the days to come are better and better.

Thats great Leanne, hopefully it will help answer some questions.