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 .

Quote:

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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

How about changing tact with the dietician? Rather than deciding what foods to challenge get her to go over a food diary and tell you what nutrients are missing and then work out the safest way to get them.

Mummy Mia - I'm just plain jealous that you are able to complain about a wet bed. We had one last night too but that was because she forgot to put on her dry nite. We've had about three dry nights in the last six months and they are only because the paediatrician has treated her night time wetting two weeks ago. Up until then we were having to change the bed once a week over the last few months as the dry nites weren't coping. And to make everyone else feel better she has been in our bed probably every second night in the last week as well.

I use the rice milk with chickpeas in it for baking - the baking turns out better than plain rice milk, but Gem doesn't drink it often.

PS: Perhaps I could start a sob story thread!?!! LOL. I'm over the night time wetting like three years ago when I realised she wasn't going to be dry as young as her sisters. What I don't like is a $17 pack of dry nites on top of my gluten free, dairy free shopping!

Oh Im hearing you Roz. Last night was not an exception!!It is a regular nightly rictual. If I put a pull up on him he will piddle it for sure.Given the choice to stay in bed and wet his pullup or get up in the cold to go to the toilet he will always wet the pullup!!!So we are trying without pullups so we have maybe one accident a week which is great.
I have a proper matt he lays on(plastic bottom,fabric cotton top) and if he wets in the night I can just remove that and it does not envole a whole bed change.It just sits on the top sheet . I got it of a freind who works in a old folks home they use it on the pensioners who wet the beds!!LOL

It is hard, we are always getting told to challange Emily, but she is so all over the place that I can't really see the point. I have been feeling rather down the last week, she has just turned 20 months and everyone is so adament she will outgrow everything by 2 years, but I can see that she still refluxes just as bad as ever, I can't see it happening. I feel like I am totally unlistened to because of this.

I would almost tend to avoid challanging (except those unplanned ones) until after your trip to starship, she is so unsettled it just seems unfair to keep pushing it for all of you. It must be hard for your other girls as well.

I can see why they want to do it, for the extra vits etc but it can't be doing them any good eating so little, I am having a hard time getting anything into Emily at the moment. It is so hard seeing them so tired and wanting to sleep but they are just so uncomfortable.

Wow, lots to reply to there!

OK - firstly Claire to the unplanned food challenge ... hope that Elise is OK for you? Lucky she didn't really like it I guess? Look forard to hearing about anything interesting from your appt with the doctor today.

Roz - go on, a whinge/sob story thread would be the best! Katey has had an analysis done but only for the main vitamins and minerals I think and thus is on iron and calcium supplements. Those mats that Mariya is talking about you can get from Farmers etc and they cost less than $20 each which is a fab investment - and they really are easy to remove from the bed with minimum fuss which is very good in the middle of the night.

Daisy - yes, that was the reasoning we came up with too ... but if she didn't react to plain cows milk twice (challenges 3 days apart) then maybe we can get away with it? Starship appt won't be until next year I think so it's a long time to hold off doing anything. Unplanned food challenges are such a part of tlife with three kids but really, we as the parents need to be a bit more proactive about it. I think it might be time to revisit Emily's meds or look at other foods that might be upsetting her? Hugs, it's not much fun at all for anyone.

Oh - best news left to last of course LOL ... Katey had her best night for weeks and woke up in a far better mood this morning ... hubby is still questioning the chickpea connection but I am sold on it if she continues to improve tonight. Best night = a pain to get to sleep, waking three times and then up for the day at 6.30 BUT she was happy to play in her cot for a while this morning and didn't wake up screaming, and she didn't have any extra bottles last night although she did ask for them but fell asleep before we got one for her. So yeah, what do you all think?

Yahhh to you. Yes those mats are wonderful. God to be up to him refluxing all night is bad enough without dealing with a wet bed and mattress. We also have a full bed cover on to save the mattress then I put that on the sheet to save me in the night doing a complete bed change. We only had one waking last night to.Things are getting better.We only have maybe one accident a fortnight???????Things are improving.

Yay, at least things are improving. We had a good night too, first for so long I can't even remember - 7pm to 7am and didn't hear her all night!

I would go with you on the chickpeas. The improved night could also be because she had no bottles, I personally find that one is a bit of a viscious circle, eases their pain and discomfort, gets them back to sleep and then they wake again an hour later refluxing like made and wanting another bottle. Makes it so much harder to say no when they can say "mummy bottle, mummy bottle" in this sad little voice! I have the same problems with the unplanned food challanges, not at home but at daycare, she now helps herself to others food, having her home sick the last 2 weeks has really emphasised how much 'bad' foods she is obviously having at daycare.....only 3 more weeks until I finish work and I am hoping this will help things.

I thought your starship appt was this year...I deal with them through work, aren't the staff just lovely?

Fingers crossed Katey keeps improving.

Kate

Yay to a better night had all round then .

I think you might be right with the theory about the bottles Kate, it is a vicious circle and I am pleased we got away with not adding to it last night. Starship appt will be within 6 months they said (a couple of months ago). I have only got praise for the Starship staff having dealt with them on a number of occasions. Not too sure what it would be like to stay there overnight though?

We are so lucky that at the kids pre-school they take Katey's food issues seriously and will even make playdough out of rice flour next year when Katey starts with them, or they will have clay out instead of playdough when she is there (which will be three mornings per week). I would give them a bit of a rev up if I were you - they need to know how it affects the child outside of the centre!

I haven't really much to add except to say I know as all the others do how you feel, how exhausting and totally tiring it all is, all you want is a happy child! Lets hope you can get her back on track! Gotta go crying wee man supposed to be ASLEEP!!

Yip, I have given them a rev up several times, I think they are genuine mistakes now and she is a cunning little monkey. I have seen her take a cracker with cheese off a little boy just as he was popping it in his mouth, it was down her hatch (she has jaws of steel I am sure) before I could get it out, it was all over in seconds. I'm sure she doesn't chew!

Hi all

Viv- glad you had a better night- great for the soul and energy to keep positive!

Claire- yep, I nearly fell for that bread once too. I hope it worked out okay for Elise. Good luck with the doc. I heard last night of a naturopath that thinks she overdoses teh supplements for these kids. I have started easing back on iron, zinc and vit C for Jemma and just seeing what happens and for Riley, I may take out the selenium as he eats brazil nuts. I need to do some research so will be keen to hear what you learned.

Excuse my ignorance but what is the relationship between chickpeas and soy because that is the rice milk we use and Jemma seems okay - she only has equivalent of 1/2-1 cup a day so I am thinking soy may no longer be an issue for her.......but am not keen to challenge her because our nights are finally better. Though we had a bad night after some tinned salmon (though she has had battered cod before- homemade style). In fact, when she reacted to what I thought was lactose free milk, that was the only other time she had salmon as well.........hmmmmmmmmmmmmm........

Rachel I have a list as long as my arm of suppliments to take they include vit e, vit a coromega, evening primrose oil, zinc drops molybdenum and iron for later, and calcuim. I'm going to do a bit of reading into it before I start, and will probably start one thing at a time. Things are very settled her at the mo.

Viv the doctor I see has an interest in allergy and autism and she has a holistic view of medicine.
Any way she gave me this handout when discussing the suppliments. It was about the effects of having high copper in your system She said when tested alot of kids with gut problems and allergies will be high in copper (not sure why)
Some of the symptoms were Gastritis, constipation, and Salicylate intolerance, iron deficiency, agitiation, insomnia, fatigue. (there are more but they are less relevant to our kids) Any way to bring the copper down is with the zinc suppliment. she thinks if we can bring the copper level down and her gut has time to heal with the help of other vitamins then we maybe able to start reintroducing some salicylates.
That's all for now I need to read all the information she gave me and do some research and stop my head spinning then I'll let you know more.

BTW she slept all night go figure!
CLaire

Gem's problem with wetting is medical I guess as it doesn't seem she is able to concentrate her urine overnight. She is being given a synthetic version of the hormone and it is making a huge difference. I may look at one of the mats though because it would be nice to have that added reassurance when we can give up the dry nites.
As for food challenges and deciding if they react or not, some of us have to challenge for two years before deciding there is a reaction.
Soy and chickpeas are both legumes and if you react to one legume you have a 5% chance of reacting to another. (There is a table on the Allergy Clinic link I posted earlier.) I see if you are clinically allergic to cow's milk you have a 92% chance of being allergic to goat's milk, but are the gastrointestinal symptoms without rash and swelling clinical allergies or just intolerances. Gem is perfectly fine with goat's milk but has diarrhoea within a short time of cow's milk. Some of our children just like to be difficult.
Better go as she has had a gastro bug and vomited her Losec two days ago, and although the bug seems to be gone is very irritable and grizzley today.