Nothing new with Katey, been to see the dietician yesterday and really wanted to come on here looking for support, inspiration or even a simple solution! Well, one can hope huh?

She is now waking multiple times at night, not sleeping very much (and thus, same goes for her poor parents) and very teary and grumpy during the times she is awake and all day 24/7. Food wise she is doing OK but has started to shove lots of food in her mouth, chews, chokes, spits out most of went in then hands it back to you and says "all finished" and then won't try anymore. She also requests a "bottle" at all hours of the day and most especially at night when she has already had one or two even! Not too sure what is up with that but think it could be a soothing thing if she has a sore throat. She has been shovingher hand into her mouth too and biting on her teddy which she does when she has a core throat. Being a mostly silent refluxer means we haven't had an spilling but that doesn't mean anything really.

To be honest we have tried Gaviscon and probiotics with no noticable results. Her diet has been challenged in the past few weeks but nothing should be giving us this extended result. The only thing changed in her diet is the hummus that hubby makes her (main ingredient is chickpeas)- and she LOVES - but the dietician says they should be good for her and she shouldn't have a problem with chick peas although I questioned her on it since Katey can't tolerate soy. I think we will cut them out as this effect is similar to what happened when we introduced oats - and once they were eliminated again she came right.

just wanting to get it all down here on 'paper', don't know where to go next. Still awaiting the dreaded non medicated appt at Starship but in all reality that ain't going to happen until next year now is it?

Mapping it out is always a good way to slap the brain into gear. I hope your poppet gets better, I think you are hitting your nail on the head with the hummus factor. Is there another type of food that she isn't allergic to that she can have in much the same type of way (pea dip maybe heh!). Personally I don't think much of probiotics. They sound like they could mask hidden problems to me (although I could be wrong that is most certainly for sure). If the use of them is not working then that is speaking volumes as well.
Like I say, I hope your poppet feels better soon and the mind mapping works on that tired mummy brain, big loves

I don't have any answers but just want to send lots of empathy hugs. The lack of sleep is the biggie because it makes it harder to be rational and see other solutions (and dh and I started arguing more in the middle of the night!)

I never thought anyone could be intolerant to potato so trust your instincts- ignore the dietician and remove the hummus and see what happens.

I was told probiotics can take quite awhile to work as in months. I have Jemma on them for months- but not every day at the moment.

Wish I could wave a magic wand for you.

for the whole family, Viv

I would stop the hummus for now also. If she can't tolerate soy then this is a likely problem. I also guess in theory it could take three weeks to see a total improvement once the foods are removed.
How long does she need to be off medications for before the test? I think we were told it would need to be three days for a pH probe but the surgeon doesn't want to do one for Gem. The reason I presume she gets out of having it done, is she can clearly tell us what is happening and is unlikely to outgrow reflux at age six years.
I hope it all settles soon.

Thanks guys, you all know where I am coming from as always .

She needs to be off meds for 2 days prior to her trip to Starship and I think they will put the pH probe in on her second day there so it will be three full days off meds when they put it in.

The surgeon spec said that because Katey's case is 'complicated' and although it looks like a duck, quacks like a duck and walks like a duck he still wants to make sure that the acid refluxing up to her oesophagus is actually the problem - if it isn't then no point in doing the surgery, if it is then we will go ahead with it.

Pleased to hear something is happening further for Gem, Roz. Really hope that it is a big step forward for her!!!

Oh and the hummus is made without seasame seeds or paste (tahini) as that is off the diet due to salicylate levels. Will be itneresting at least to see how she goes without the hummus. Hubby isn't convinced it is that but what else can it be?

Once we get her sorted out we are to trial her back on milk - not cheese though - and then move onto soy. Soy mightn't be any good though if this issue with with chickpeas (are they related? How?) but she hasn't had any real trials with soy since she stopped soy formula way back when she was 6 months old.

Have made pea and chickpea dip actually, Peace . And roasted pumpkin hummus too! Was yummy. The pea stuff was not so yummy.

Thanks to you too Sheri, you are always there for me .

Started a similar thread myself this morning, but Miss Grumps deleted it whilst I was part way through and it was all just to depressing to repeat really. Totally feel for you at the moment since we are right in the middle of it ourselves.

Emily asks for bottles all day and night too when she is refluxing and I have found with experience that it is better to say no, especially during the night because it seems to exacerbate the problem. I had been wondering about the teddy thing too.....seems you may have confirmed that for me.

I would stick to your instincts about the hummus, if there is one thing I have learnt from dealing with reflux and allergies is always trust your own instincts, don't worry about what all the peads/GP/dietican says, they are often proven wrong I find.

Big to you.

Kate

Viv, would you mind if I had a copy of the food diary you have? I have finally had our GP agree that we need to see a dietican and she wants me to keep a food diary first so she can have a look.

Thanks
Kate

No problem Kate, it's an Excel spreadsheet so PM me your email address and I will send it to you .

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I would stick to your instincts about the hummus, if there is one thing I have learnt from dealing with reflux and allergies is always trust your own instincts, don't worry about what all the peads/GP/dietican says, they are often proven wrong I find.

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So true = found this out with oats - according to the dietician they do not contain gluten. I don't know if they do or not but they don't agree with Katey so you have to wonder ...

Viv,

Sending HUGE hugs to you and family....really hope you find some answers soon.
I'm no longer sure if there are any answers......as we just seem to get an answer sorted.....and another question pops up!!
It really does sound like Katelyn is miserable....yes to the night bottles, it does seem to soothe the throat (Caitlin had 2 during the night last night).
Feel free to send your Katelyn down to us for a wee break.....we will send her home next week with our Caitlin.

Take care, thinking of you

Hey Viv

I hope this bad patch won't last for too much longer.

I wish I could remember when Jacob started waking 2-4 times a night (he slept thru the night when he wasn't on any medication but started waking about 2 weeks before going onto Losec (from memory he was sick in that 2 week period)). But I THINK it was around June/July, so around 20,21 months. He is still waking at night but most nights it's only 1-2 times.

I don't know if these are any of the reasons why Katey is waking lots at night, but around 2 years lots of kids have nightmares/bad dreams (Jacob does & often wakes after a bad dream) but also the 2-yr molars might be coming through? (Though I think you mentioned previously that you have found that teething doesn't seem to affect her reflux).
But with regards to the 2-yr molars, I do wonder if they takes months to come through and the pain starts below the gum line, as Jacob has been having lots of pain with his and we can feel quite a few of them under the gum line and the one that has come through seemed to take ages to come through.
So I just wondered if there could be other things happening with Katey at the moment like issues with her teeth, that might be making her reflux worse and/or making her wake up more.

I totally agree with the others - get rid of the chickpea dip for now and see how that goes.
Also I have read that oats are gluten free however they are very easily contaminated with gluten during manufacturing & processing. I have also heard that some gluten-sensitive people are ok with oats, but others cannot tolerate them. We have taken Jacob off oats just to be on the safe side (have just started him on a GF trial) - luckily he loves his porridge made with rice flakes just as much!

P.S. Also, forgot to say, when teething Jacob puts his fingers in his mouth and also (but not so often now) bites edges of books (we have lots of chewed books now!) and sometimes bites teddy.

Good luck!
Hugs to you all

I wouldn't go ahead with surgery at Katey's age without testing first either. Gem has already had a scope and a barium swallow so these should have picked up anything that wasn't reflux. We need to reduce her reflux medications so surgery is the best option but I also don't regret having waited this long.
This is about cross reactions http://www.allergyclinic.co.nz/guides/42.html and I presume chick peas are a legume like soy. Are chick peas low in salicylate? Christy reacts to peas and we thought this was because they have salicylates - but she only reacts to some salicylate containing foods. Gem doesn't react to soy the same as she used to but she does still react if she has a lot. All that happens now is a rash - usually on her face.
I'm going to make sour cream to go on the nachos tonight with tahini and coconut cream. I'm hoping Gem will be okay with it as I don't think she has had much sesame.
As for oats they are a controversial one. Apparently technically they don't contain gluten but are easily contaminated when being grown. I had heard that coeliacs were often okay with them but that gluten sensitive people aren't. Christy and I have both been challenged with them and they aren't good!

Oh Viv I hate hearing that things are not great with you cos It seems to be mirrored at our house.

Hmmm ELise is getting her 2 year old molars at the moment. And I'm guessing you've ruled out a normal illness like throat infection, or ear infection.
Hope the cutting out of hummus helps.
Claire

Vivianne sorry to hear that you are having trouble again.

Why do you think that the dietician wants to do so much challenging when she hasn't settled? Is it worth trialling foods when the reflux isn't under control? (knowing that it can take weeks to come right).

Are challenges worth it?

I was also told to challenge, but like you are finding, it was in vain. I didn't ever have a successful challenge and instead give up for six months or so. It took those months for his gut to settle and then it was amazing. He just came right and was able to tolerate all the foods (except the main problem e.g. milk).

The way I look at it is that it has taken a year for their stomach to become this irritated so wouldn't it be reasonable to assume that it would take a long time for it to heal? I think every time we trial we irritate it all over again and end up back at square 1.

Good luck.

Kelly

Just thought that wasn't very clear.

What I am saying, in my usual round-a-bout way, is that if you know that a strict diet works why not stick with that diet? Eliminate nothing, introduce nothing new, and trial nothing and see if she can improve further rather than trialling foods to see if she worsens. Make sense?

Kelly

Yes, I know what you are saying Kelly . We haven't tried anything new though - the chickpeas have been in her diet, just not as much! She only has that much as she LOVES the hummus and it was the first thig she has really gotten into in the past what, 6 months? And since they were on the list well, we gave it to her. She has been a bit better this afternoon although not eating a heck of a lot and is currently in bed but not going to sleep *sigh*. I gues the reason why dieticians want to have a more inclusive diet is because variety tends to get more food groups, vitamins and minerals into the kids and then they don't need supplements.

I was just a little bit annoyed when she told us to give Katey oat cookies with rasins in them at our last visit - then when I told her we had done so this visit she said it was a bad call as they had raisins in them! Friggin heck, just following her orders . Anyway, other than that the advice has been good.

No, not molars. If it was a teething issue then pamol would make a difference I think and it does not.

Miss Muffet - havinghad a couple of two year olds before I know that night waking is normal ... but this is different. She is reeeeally tired and wants to sleep but can't - I think she is just so uncomfortable? It's not the same as what our other kids went through. Also by this age they were back to being good sleepers . We have always had a good sleeper in Katey if her diet and medication levels were right.

Thought of you too Claire ... I hope not!

Oh, and other than the milk then cheese challenge we did a while back (and at the first sign of discouragement we stopped) the challenges have been unplanned , so in other words we haven't been quick enough to clean up kiwifruit dropped in the ground by her sisters, or cleaning out their lunchboxes from pre-school.

These challenges are life Viv, they will happen with 3 kids all eating various things a toddler is bound to pick up something. As she gets older she will learn to understand her food restrictions and put two and two together re the bad effects(James relised at about 4yrs old). You dont have to justify yourself re your food challenges!!!!!You are doing a wonderful job trust your instints you know what is right for Katelyn.

I would take the chickpeas out cause we were told if kids have a soy intollerance then chances are they will not tolerate chickpeas!!!LOL Conflicting advise!!!!When we were having the dramas with Vitasoy Rice milk that was chickpea enriched she suggested it was probably the chickpeas that were the issue not the rice???
Anyway .........Lovely to meet you>>>>>>>I knew one day we would cross paths at our peads!!!Great timing.
The meds we got put on is no longer available so we are now going on losec and zantac to see if that improves his reflux.
Hope Katelyn comes right soon. We had a broken night to. A wet bed at 11.30pm and refluxing at 5am.GRRRRR.

LOL - and here I was thinking that we hadn't actually tried soy in so long then maybe she had grown out of it. Obviously not! Yeah, I did ask about chickpeas and soy and she had just asked ROhan not long ago about a wee guy who had tested ++ for chickpeas being able to have soy - apparently it was OK? Might be an allergy vs. intolerance thing like mentioned above by Roz with the gluten/oats thing.

Yes, was so lovely to meet with you and James - and typical that it was at the specialists office . Bugger about the drugs, hope the Zantac and Losec work. Although pity about him not wanting to do the Motilium thing again eh?

It is always such a mystery more and more guessing.

I am going to my new doc tomorrow finally I had to cancel the other appointment as that was where Elise was reacting to the antibiotics and she was is no state to go anywhere. I imagine I will come out with a list of suppliments that Elise will need to be on she has already mentioned iron and zinc on the phone. Anyway if there is anything interesting or helpful that is discussed I will let you know.

SPeaking of unplanned food challenges we had one yesterday!!!! DH bought home a beautiful GF loaf made in his work bakery (New World) and we chopped it up and it was lovely and soft and fluffy. ELise didn't really like it but when I was putting it away I read the label and it had milk in it ....no wonder it was so nice and fluffy!!!!!
So I am waiting for the screaming to start nothing as yet but the night is young!!!!!!
CLaire