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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Tomorrow is crunch appointment for DD

(24 Posts)
TheLogLady Mon 15-Nov-10 14:09:59

This is long - sorry. DD is now 12.

i don't know what to say tomorrow or what will happen.
she's been referred to a different consultant as a last resort as previous doc doesn't know what to do next.

potted history

crap diet her whole life. she eats bread, roast potatoes, chicken, ham, crackers, crisps, biscuits, cake (That's it)

3 years ago started feeling sick all the time. every day, often. has tummy cramps. never actually sick (puke phobic) bowels OK.

medically nothing obvious wrong - even had an endoscopy 2 years ago which was normal.

behaviour always been a problem. has huge tantrums. hates changes in routine. doesn't cope with noise, touch, taste, smells, crowds, being thwarted. has very few interests. doesn't actually like much at all.
think she's quite emotionally immature but could be bright if she put her mind to it.

school. went through a school refusal stage about 4 years ago - has been a huge battle to get her there since. she does go now but hates it.

i think she possibly has aspergers - waiting for PADG assesssment (9 months and counting) had some CAMHS input but she wouldn't engage at all so they kind of gave up and passed her on for more assessment.

I'm not convinced and never have been that her nausea and abdo pain is all psychological. it is worse after she eats. but also worse if there's something going on she doesn't like.

SO what next? any ideas at all?

PixieOnaLeaf Mon 15-Nov-10 16:42:43

Message withdrawn

dikkertjedap Mon 15-Nov-10 18:22:19

Long shot -- and I am no expert, but a very good friend of mine, now in her fourties, has only recently been diagnosed with Crohn's disease, as has her son. Her son seems to have some of the things your dd seems to have. I am not an expert, in the endoscopy did they check for things like Crohns?

auntevil Mon 15-Nov-10 18:36:17

My DS1 has a few of the same symptoms. He is dx dyspraxia with ? Aspergers. He has been diagnosed as fructose, sucrose and dairy protein intolerant.
He is emotionally immature but bright. he has lower right quadrant pains - possibly bowel, perhaps kidney. They can double him over in pain. Gastroenterologist says its nothing to do with food - but i'm not so sure. The general diagnosis - which has never as such been refuted, is that he has IBS. There are many potential triggers for IBS - some food, perhaps some physical, but also 'stress'. stress can be anything from looking forward to something - to dreading something. It could be that any part of the process of eating is getting disrupted.
Main problem with IBS is that the symptoms are treated as the cause is often unknown. Pain relief for cramps, meeds for constipation/diarrhea etc

2madboys Mon 15-Nov-10 18:41:05

Please get them to test for Coeliac disease before removing stuff from her diet. My husband has it and also can be very grumpy if he eats something with gluten in it! She is eating an awful lot of stuff with gluten in it, but if you cut it out, any blood tests are likely to come back negative.

TheLogLady Mon 15-Nov-10 19:06:01

cheers all - just got to wait to see what the doc says. bloods and endoscopy for coeliac were negative (although she has weirdly low levels of IGa).

I've always thought maybe food related but I don't know what.

Pixie - hows your DD doing?

PixieOnaLeaf Mon 15-Nov-10 19:16:05

Message withdrawn

TheLogLady Tue 16-Nov-10 13:48:02

bloody waste of bloody time that was.

asked the usual questions. DD as usual pretended everything was normal. Doctor told her to eat vegetables. DD agreed. we legft and DD had a huge paddy all the way home. as usual.

PixieOnaLeaf Tue 16-Nov-10 16:09:31

Message withdrawn

nightcat Tue 16-Nov-10 16:59:26

Hi LL, you won't get far with drs on intolerances, you need to educate yourself and it's all do-able at home anyway.
My ds whom drs have totally written off has improved magically by diet despite all doom and gloom pronounced by experts who also said repeatedly thatthere was nothing we could do.
Check out here, particularly the section GAPS-what is it?
You might want to get the book too and get started

Not easy at first but if it works it's pretty much like a miracle - was for my ds!

TheLogLady Tue 16-Nov-10 17:21:39

wouldn't even mention intolerance to a dr. they's view it along the lines of rhino horn or dowsing rods i expect.

problem is her horrible diet is so limited the thought of cutting stuff out hurts.

will check out the linky though.

nightcat Tue 16-Nov-10 17:25:00

No, you don't have to cut out much, you just need substitutes, once she (and you) see the difference, you will find it much easier.
It's all there, inc how to handle fussy eaters

TheLogLady Tue 16-Nov-10 17:35:18

um. is that real or a bit woo? i ask becase i just read i like this shock

TheLogLady Tue 16-Nov-10 17:36:31

is the book any good? or would it be worth actually finding some nutritionist type who works along the same lines?

TheLogLady Tue 16-Nov-10 17:38:15

and is there anyone anywhere who might take her and detox her for me as i'm not sure i could do it.

she's having a paddy now about trying to eat an apple

auntevil Tue 16-Nov-10 21:11:26

I so know where you're coming from - it would be so wonderful if there was a service - like they have for dieting - where you pay for someone to deliver only the food that your DC needs - and takes out and re-introduces all the possible intolerances until you find out the offending items. Dragons den here we come!
From bloods and Hydrogen breathe tests DS already has his diet limited. It still hasn't got to the cramp causer - and the gastroenterologist basically said that's all he could do. I'm trying to get my head around the ones that he avoids now, but when i do i will work my way through as many other possible substances. I have the opposite of you in the fact that DS loves all food, but because of that, gets really upset - to meltdown point - when he can't have something. It's tragic when you have spent some of this evening making chocolate peppermint creams with ground down xylitol (no sucrose, fructose), peppermint oil (aid for digestion IBS) and xylitol chocolate (no sucrose, fructose or dairy). It would have taken 5 minutes to walk to the shop and get something already made!

nightcat Tue 16-Nov-10 21:23:04

hi LL, the book is excellent and it will work out cheaper in the longer run then a nutritionist unless you find someone in NHS. The results are real and you don't have to do it to the max in the book (home-made yoghourt etc), I don't do it all, but the results have been awesome. I prob do 80% but my ds is gluten free 100%.

All you need is good real foods plus some probiotics and occasional vitamin, I never went for mega doses of any supplements, wasn't comfortable doing that, not even probiotics. Detox will start when you remove wheat and most of sugar.

The book is excellent as it tells you not only what but also why, which I found very informative and to be honest inspired me to start straightaway, as there were just so many boxes I could tick that fitted my ds.
The author has a private practice, but going by the book you can still achieve great results. She also has some presentations on utube. Some mums here also recommended her in the past, my ds has been gluten free and braodly following the diet for 5 years now and changes astounded me.
Bear in mind that detox is bound to have some side effects and also it's not just about one thing that you need to do, it's the whole approach. There is no one magic pill and at least with food you are not risking anything.

LoveAndSqualor Tue 16-Nov-10 21:37:01

Hey there, realise this is cost-dependent, but if you could afford it, might you consider taking her to a nutritionist? I had IBS and was at my wits' end - one visit to a nutrition sorted it (seriously!). Am now seeing one again as I have interstitial cystitis; seems to be helping. I realise it's tough if she's not prepared to change her diet, but it might be useful talking to someone who isn't a harrassed gp about how food might be affecting her. If you're in London, I can give you the name of my woman, if you like.

LoveAndSqualor Tue 16-Nov-10 21:39:53

Sorry - just realised I've echoed a couple of the previous points. One other thought - charcoal tablets good for IBS, maybe worth trying? And peppermint tea is wonderful if she can stomach it. And - does she exercise at all? Just a daily walk makes a huge difference (big thing in tomorrow's guardian about this - maybe worth looking at).

I know how miserable digestive stuff is, sorry she's going through it (and you too, by proxy!)

nightcat Tue 16-Nov-10 22:06:38

auntevil (great name btw), the cramps, could it be soya? Coz me & ds react like that to too much soya, esp soya milk, you reminded me how bad I was when I tried it.

auntevil Tue 16-Nov-10 22:45:57

I have made a real effort to stay away from soya. When all my 3 went dairy free, i read varying reports about soya and thought i would limit it just to be safe! DS who is sucrose and fructose free as well doesn't have a great deal of soya as there is often sugar and or fruit added to shop bought products to make it more flavoursome biscuit . Deep down i have this nagging feeling that the kitchen fairy wants me to cook everything from scratch and that he could find wheat/gluten an irritant?! I wouldn't mind so much, but all 3, plus DH, have really big appetites - and they're all skinny. I feel like i work in a 24 hour cafe at the best of times.

TheLogLady Wed 17-Nov-10 15:38:44

Thanks all. i might have a looksy at the book.

DD is so unbelievably difficult and limited in what she eats i can't fathom trying to change. she wouldn't do soup or yogurt or supplment probiotc anything.
i might look into nuritionists (not in lndon unfortunately) too.

nightcat Thu 18-Nov-10 10:48:17

LL, you might be surprised how her personality will change for the better when the food habit is broken, my ds was grossly uncooperative+++ and permamently negative+++ and within a week off wheat (just off wheat), I started seeing a new personality that I never knew existed. I do best I can using book advice and, as we now know why we are doing it, it's easier.

This is the only book that brings together food and neurology that I came across and actually keeps it simple.

He is now a fussy eater but the fuss is about healthy food, wouldn't go near wheat and reads labels to make sure himself.

From my own experience, I can tell you that her reaction to food is not just psychological, when you read the book you will probably know more than some nutritionists who might just offer you supplements rather than diet advice.
Your dd is prob deficient in lots of nutrients and overloaded in others, but it's best to clear the overload first before adding too much.

nightcat Thu 18-Nov-10 10:50:00

forgot to say, probiotics capsules can be open and sprinkled on food to make them un-noticeable, although the key is changing food habits, they call it breaking the vicious circle

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