Author Topic: Moving backwards  (Read 2943 times)

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Offline Edesanja

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Moving backwards
« on: May 14, 2011, 02:01:41 am »
I feel utterly defeated. I am so confused and deflated and am low on hope right now. Help.

J has been getting sore tummies since he was about 2 months old. Earlier maybe. That's a year now. He's been medicated for reflux, dairy and gluten free and until a week ago we were hardly giving him any fruit - just bananas and blueberries. This was because back when he was 6 months old I (thought I'd) found a link between giving him pears (with his losec) and him getting a sore tummy - screaming fits of tummy pain for 40-60mins. So since October, he's only had pears a few times (with the same results). Giving him apple, watermelon, peaches SEEMED to give similar, (sometimes slightly intense than the pear, sometimes just general tummy discomfort reactions so we didn't give him those either. After investigating, fructose malabsorption seemed like a likely possibility given the reaction and the fruit involved. Even just 6ish weeks ago, J got hold of some of DD's pear and he had a screaming NW for 45mins at 3am.

DH was always a bit sceptical (he's a scientist  ::)). He reckons I have a selective memory about all the times he gets a sore tummy and he hasn't had fruit and that I wrongly correlate his sore tummies with fruit. So he proposed that we'd do a blind trial. He'd give J pears without me knowing and we'd see what happened. Well he did that last Saturday. J was fine. Sun he didn't give him anything and J was a bit uncomfortable for a wee while in the afternoon, but he could be distracted. On Sun evening after quizzing me on how I thought J had been, he revealed all (I had said that I didn't think he'd given him pears on Sat and on Sun he was a bit uncomfy but I didn't think he'd given him pears then either).

We've given him fruit every day this week. He's had NWs (rare), been EW this am, had a hard tummy and been grumpy. He did pop a tooth today though, but teething shouldn't/doesn't give him a sore tummy.

Suddenly I feel just as lost as I did way back when he was small and we were trying to sort out reflux, intolerances, sore tummy etc. We've dealt with the reflux, milk and gluten and I thought we were 'winning' with the fruit and now I feel like we're back to the beginning because if I have interpreted one wrong, then am I wrong about them all?

Maybe I'm just so much of a control freak that I NEED the cause of it to be something I can control. I hate it when he's uncomfortable and I absolutely can't stand seeing him when he's having a screaming attack of whatever it is. It's totally hideous to see him writhing around like that for so long. Maybe I just feel like I need to do all I can to stop that and that's why I have seen links with fruit when it's just coincidence. If it's just random, I can do nothing :(

DH reckons I have a selective memory about all the times he gets a sore tummy and he hasn't had fruit. He's probably right. But the until these past 2 weeks, the times he's had pear and the times he's had a screaming fit were 1:1. There were only about 6 times in the past 6 months though.

Of course, if he really isn't fructose malabsorbant then I am THRILLED! But that doesn't make it any less confusing. It doesn't change the fact that he gets sore tummies whether they are caused by fruit or not. The confusion seems overwhelming right now. I have been so upset this week and I'm not totally sure why since I really don't want J to have restrictions on him that might be life long. I feel like a fraud. I don't trust any conclusions I've made (and maybe DH doesn't either?). That's probably not quite fair (since we did end up doing blind trial of gluten unknowingly), but I just don't know how I can carry on trying to figure out anything about J anymore. And we've still got to trial dairy again sometime so it's not like it's avoidable.

How do I figure all this out? I'm carrying on - I've given him fruit every day this week. I haven't cried as much as I have this week since he was quite a lot younger and everything was so overwhelming. Ugh. Help.
Jenny - mama to



Offline Buntybear

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Re: Moving backwards
« Reply #1 on: May 14, 2011, 11:02:54 am »
Oh sweetheart, I am so sorry. I am welling up reading it as I feel your pain. Have BTDT so many times myself. It is heartbreaking and so frustrating.

Have you kept a food diary? Can you share his menu and we can have a look and see if anything jumps out. Does he eat eggs, nuts, soy or any of the the common allergens?

Dh and I sound very much like you and your DH. My DH is an engineer with a scientists brain. We have spent the last 16 months trying to work out what intolerances/allergies he has and yes, we have gone round and round in circles, constantly doubting ourselves and trying to find the strength to continue anlaysing everything. Jenny, it has been you that have given us this last week of relative calmness with your help on my thread poiting out about fructose-  I just wish I could do the same for you xxx

Offline EloysH

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Re: Moving backwards
« Reply #2 on: May 15, 2011, 04:28:43 am »
Crap Jenny  :-[  My heart goes right out to you.  I really do understand why this is causing you so much grief and yes I would be crying about it too. 

Look there are many good points in your posts. I think it is a really lucky break that it might not be fructose malabsorption.  My thinking is get a dietician to  test this with you again and get some good advice. 

I have to run, we are having our own sets of issues here qwith K, - it has not been a good month or good weekend,  I will think about this more and come back with some good stuff for you.  I think you guys will be ok.

I am scientist myself too  ::)

Offline Edesanja

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Re: Moving backwards
« Reply #3 on: May 15, 2011, 06:09:44 am »
I didn't have time to post this morning but I was going to say BB that DH is an engineer too (and I frequently think that the things that make him such a great engineer make him really hard to live with sometimes!! ::)). What kind of scientist are you, Eloise?

And about the things he eats - we've only been giving him eggs a few months and really only in baking because he won't eat them straight. So it's in banana bread and pumpkin biscuits that I make and he eats a few times a week, and in the GF bread. So he will eat something with egg in it every day. I really think that eggs are ok.

Soy - the only soy that he eats is in the GF bread. He doesn't eat anything else with soy.

No nuts, no other common allergens.


Anyway... they were my thoughts earlier today. Then....

J woke up from his nap having a screaming fit. DH dealt with him (he's very rarely home when he is in that state ::) though he did deal with it in the middle of the night plenty of times when he was very small). It went on for 50mins then he put him back to bed and he finished his nap. The thing is, he has barely eaten anything today (he's teething - his 6th tooth has cut through but is not quite fully out). He had oaty pancakes for breakfast (we ran out of eggs so I used egg replacer instead of eggs, oats, rice milk and salt) with raspberry jam. He had popcorn, a corn cruskit and a few dried cranberries for a snack and didn't want lunch but in the end had another small pancake and a banana. That's it. Cranberries are the only thing that he hasn't had frequently but he has had them this week without incident.

So I am feeling more 'convinced' by the not-food related theory right now. It's just so STRANGE. We've had 2 of these screaming fits in the past 10 days but then the time before that was the beginning of March. We seriously haven't had a lot of episodes since I cut fruit back in October. Why 2 in 10 days now?

Eloise, you are right - we will be ok. In all I have learnt about food over the past 3 years with the food issues my kids have had, I have just found it really hard to believe that it ISN'T food related. Btw I've looked up those books you mentioned on Liz's healthy eating thread and I've reserved them. I've read Nourishing Traditions. Is it kind of similar?  I'll look for posts on Kai. Sounds like a rough time.

As for seeing a dietician, I'm pretty sure that it will be impossible to talk DH into that now. He had finally agreed that if he failed the pear trial that we would see one. I see no hope now. DH wants to trial gluten and dairy in the same way now (without me knowing) but has said that we will go slow for now if I want. I want to give him a few weeks on all fruit first.

Thanks so much ladies - I really appreciate you!!  :-*  :-*
Jenny - mama to



Offline EloysH

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Re: Moving backwards
« Reply #4 on: May 15, 2011, 11:32:05 am »
Quote (selected)
I want to give him a few weeks on all fruit first.

Yep, that sounds like a good plan.   This will be more telling.  Food challenge protocol usually involves giving large quantities/doses of the food you are testing for at least 7 days, so you can be sure if they are "ok" with the food.  Hold everything else constant though so you don't second guess youselves if there is a reaction.

Well since he is teething, it makes it harder to pinpoint the screaming fit reason. Did he have a hard sore tummy too?

It might be worth following a food challenge protocol for wheat too as I recall it is 1-2 slices of toast a day for 7 days.


Quote (selected)
Suddenly I feel just as lost as I did way back when he was small and we were trying to sort out reflux, intolerances, sore tummy etc. We've dealt with the reflux, milk and gluten and I thought we were 'winning' with the fruit and now I feel like we're back to the beginning because if I have interpreted one wrong, then am I wrong about them all?

I have been through this with Kai, the thing is, you don't know if he is growing less sensitive as they can out grow these things with time, the doses that they need to eat might just be higher now.  Again this is why it is worth persisting/repeating with a drawn out food challenge.

  Kai is tolerating high salicylates now and it makes me feel sick to think that I was eating low sals for all those months for no reason.  But then I think well I went through the challenges, I interpreted the results as best as I could, and I made the decisions at the time based on the information I had. I am pretty sure that he was "that" sensitive, but maybe he became less sensitive alot earlier than I gave him credit for, who knows????  Again that's why we need to repeat and challenge when we get the chance.

If your DH does a blind trial of wheat it might not mean anything. I don't know how fructose works, but certainly for wheat and dairy it can take a while to build up before they react.    And now I will share a little bit of our last month: - we had sickness, immunisations and a failed med wean all at the same time, fevers and vomiting.  it was horrid, Kai serisously did not smile of r week and lost weight. He was so listless for about 5 days and only would eat a few teaspoons of food here and there.  It took him so long to get stable on the meds, he was refluxing all day long and have long NW's night after night.  And stupidly we started letting Kai eat crusts of our toast each day. ::)   On about day 5, he broke out in really bad red patches on his legs and arms and also cheeks.  We immediately stopped the crusts, and two days later his body was back to normal.  Wierd.  So we need to do a wheat challenge to get to the bottom of it!  Just when he's a bit more stable   :o

Great about the books, I hope you will LOVE then as much as I do  ::)  Quite similar to nourishing traditions philosophy but modern recipes, with ingredients that are possible for us to find. And nice to read the same nutritional information from another author.  8) :D

Oh and when I ever go back to work  ;): -I am an environmental scientist - working with remote sensing and geographical information systems.




Offline Edesanja

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Re: Moving backwards
« Reply #5 on: May 16, 2011, 01:11:13 am »
I have been through this with Kai, the thing is, you don't know if he is growing less sensitive as they can out grow these things with time, the doses that they need to eat might just be higher now.  Again this is why it is worth persisting/repeating with a drawn out food challenge.
That's true. I've been seeing it as more black and white but I think DH has influenced that a bit - like I'm too afraid to say that to him in case he says I'm just changing my theory to fit the findings ::).


f your DH does a blind trial of wheat it might not mean anything. I don't know how fructose works, but certainly for wheat and dairy it can take a while to build up before they react.
I really don't want him to do it that way, so I'll have to convince him. I t was like that for know from our past trial of wheat. We gave him weetbix and he was fine for a few days before his tummy got harder and harder and we stopped (but then gave him rice bubbles that I didn't realise had malt in them - I kept saying to DH that it was like we were still giving him gluten when we weren't and it all made sense when I realised about the rice bubbles and stopped them and then his tummy was fine too). DH says though that if he can tolerate weetbix for a few days then he should be fine with a little bit of wheat sometimes, which I'm sure he's right about. I always want to know the tolerance level though.
Jenny - mama to



Offline huntersmummyinoz

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Re: Moving backwards
« Reply #6 on: May 17, 2011, 04:19:30 am »
aw jenny, so so many hugs hun. i totally understand. there have been so many times when i have wondered how much is in my head and how much is real reactions and then there are always darn teeth to mess with things too. it's very hard to do things 'scientifically' at this age when they are teething most of the time, still going thru growth spurts, night sleep changes, etc etc.

i do find having a dietician is really valuable. it has made me more sure of my interpretations of reactions.

i have found tho that i need to persist more with 'maybe' reactions. by that i mean when i think he might be reacting but not definite, then i now continue with the trial for a week during which time symptoms either worsen and i stop the trial or they have settled and i then deem the food safe. (and quite a few times we've had teeth during that too, so i continue and then symptoms settle afterwards). tho we have had a few severe reactions now that i can tell more what is most likely a food reaction rather than something else.

i'd def be trying to convince DH that the wheat and dairy trials need to be considerable amounts for a full week to be able to really tell if he is reacting or not. blind occasional trials just arent going to give u the 'evidence' u need. for the wheat challenge, we did weetbix for 3 days, then weetbix and toast for 3 days, then weetbix, toast and pasta for 3 days. that's a bit more than the recommended challenge for the last 3 days, but for me, i needed to know for sure that it wasnt wheat. i know for sure it's not a GI issue for him, but i do occasionally Q whether his slight excema on his cheeks is from wheat, tho that could be sals too and i dont know if i am ready to cut both of them out completely again when this is the only symptom. agh, it's all so hard isnt it!

DH is an engineer too but he comes to nearly all dietician and paed consults with us so i think his understanding that it's not such a clear cut scientific process is perhaps clearer because of that.
more hugs, thinking of you x



Offline huntersmummyinoz

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Re: Moving backwards
« Reply #7 on: May 20, 2011, 04:22:51 am »
how r things going jenny? hope all is ok, thinking of you :-*



Offline Edesanja

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Re: Moving backwards
« Reply #8 on: May 20, 2011, 06:18:00 am »
Thanks for checking.
Looking back I really do wish we had seen a dietitian earlier. We saw one with DD (private GI/ allergy paed but public dietician) and she was fabulous but only worked public. DH was the reason we didn't though.

DH has agreed to do dairy and gluten trials *properly*

Like I said he was teething and that ended on Tuesday, but on Monday night/ Tuesday morning he got a cold and runny nose which by Wednesday included a sore throat and a lost voice. He's finally on the way up today but he hasn't eaten a ton for the past week or more. He has still had some kind of fruit most days though and has been fine. He's had EWs but they coincided with meds wearing off so teething-related and were eliminated when I changed when I dosed him.

So I do think the fruit is fine. I can't describe how relieved I am, and I am not as upset about the whole situation as I was. It was stupid to be as upset as I was, but I truly was!

I took him to the Dr yesterday to check about his sore throat since he kept touching his neck and had lost his voice and she said it's just viral. While I was there I asked her about the calcium and she said to give him calcium rich veggies and salmon, but tbh she had to look up the RDI and veggies with calcium in them (I seemed to know more than her about that!). She didn't mention calcium supplements (and neither did I ::)).

She said to try cutting losec before doing another dairy trial which is what I was going to do anyway. So we'll wait maybe another week and then get stuck into that.

Will keep you posted.  :-*


Jenny - mama to



Offline huntersmummyinoz

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Re: Moving backwards
« Reply #9 on: May 22, 2011, 04:36:37 am »
not silly at all hun, it's hard when things happen that make us second guess ourselves. who knows, maybe he wasnt ok with fruit before but is now that he is older. either way it is good that he is fine with it now.

great news that DH is on board with wheat and dairy trials.

best wishes hun  :-*



Offline EloysH

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Re: Moving backwards
« Reply #10 on: May 22, 2011, 09:31:17 am »
Good to hear your update Jenny  :)  Glad he is good with the fruit,  it must make meal time more interesting and easy for you.  ;)   I can imagine how upset you were, your  world was literally "shaken" again.

Kai is coming really good too, we are considering what will be the next food trial since we are not weaning meds again for a while. Got wheat, very high sals and more dairy foods to try. He is on unrestricted quantities of high sals and seems fine!  Just doing a few more weeks of it to be sure  :)

Offline aidenmc

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Re: Moving backwards
« Reply #11 on: May 26, 2011, 02:11:33 am »
Just came across this post Jenny and had to reply. What a struggle it all is isn't it? Your story sounds just like my experience with S. It has been a long 10 months trying to control his tummy troubles - reflux, gas, then constipation (and more gas) with solids. We have been off dairy, soy, then more recently gluten, which was started about when we weaned meds. That seemed to take care of the chronic constipation and the big round hard tummy. Made me wonder whether your lo's screaming fits coincide with difficulty passing or havint ig hard bms. That was what we dealt with for months. I was pretty convinced that the reflux meds were responsible for the constipation so we both started back on gluten - well he got bunged up again, and in retrospect, was refluxing more again (even solids). So back off the gluten we went. We still have gassy periods - who knows what it is.

I am like you and want to know just what it is that gets him uncomfortable. We had very similar issues with DS2 and I tried an ED but didn't see a difference. He eventually just got better with time.

We are only now working on independent sleep with S but I suspect it won't mean an end to our NW filled nights (at least it hasn't yet ::)).
Becky,
Mom to Kieran (10/15/2000); Aiden, (7/ 8/ 2005); and Samuel (7/10/2010)

Offline Edesanja

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Re: Moving backwards
« Reply #12 on: May 26, 2011, 03:52:43 am »
Thanks for sharing Becky.

Made me wonder whether your lo's screaming fits coincide with difficulty passing or havint ig hard bms
He has never been constipated and doesn't have hard bm's, but everyone certainly does notice when he's having one as he goes bright red and is very noisy about it. But having his screaming fits don't end with bm's or passing gas or anything. Occasionally yes, but mostly they just randomly end.

I'm still not sure why we've had 3 episodes in less than a month while we were so good for so long before. :-\
Jenny - mama to



Offline aidenmc

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Re: Moving backwards
« Reply #13 on: May 26, 2011, 14:48:50 pm »
DS2's and DS3's bellies both have been much more gassy and upset when teething or with colds. Almost like the mucous upsets their tummies. But I hear you about the food. I am constantly trying to figure out what other food is a problem, or whether gluten, dairy and soy are really a problem.
Becky,
Mom to Kieran (10/15/2000); Aiden, (7/ 8/ 2005); and Samuel (7/10/2010)

Offline Buntybear

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Re: Moving backwards
« Reply #14 on: May 26, 2011, 18:22:35 pm »
Hi Jenny, you are sounding a bit better in yourself now?? Olly has got gassy again. Getting 20-30 min NWs with gas around 10.30ish. Hard to know if food or teething! Hasn;t had a tooth in 6 weeks and he only has 5 at 16 months anyway!