is this normal or have i just got to ds's pains?

[7up]

i just posted this on special needs and realised it should probably be on here!

my ds now 2 is finally, after 2 years of drinking tons of water a day, been diagnosed with cranial diabetes insipidus and i inject him twice a day with a hormone to replace the missing one.

hes on a strict diet for what im now told is food intolerances not allergies. he has had negative rast tests, negative endescope to check his belly and upper bowel.

the problem is that even though his diet doesnt change he has phases, which this one has lasted a week so far, where he squeals and squirms all night.and i mean allnight. his belly is really noisy and his eyes do roll in his fitful sleep. during the day he can be happy then for no reason just lay on the sofa looking quite rough really then when hes had a rest he'll get up again.

its driving me mad, because obviously i dont want to see him in pain. anyone else with intolerances that have the same symptons please.

my mum has said to me that most parents would take him to a&e if their child was like it but said ive got to used to living with it

[TwigTwoolett]

sounds like he has a bowel disorder .. IBS?

I'd be on doctors' backs to find the cause and not be fobbed off with intolderances .. if you are on a restrictive diet and still getting substantial problems I think I'd worry

is he under a paediatrician? has he seen a gastroenterologist?

sorry I know its probably not what you want to hear

[7up]

ive thought of ibs, hes been like it since birth.

he has 2 paeditricians, one for the diabetes insipidus who i hate as hes taken since may to finally admit that ds has it!because its rare he put him through awful tests because he didnt think he had it. i knew he did!

the other paed who we see in 3 weeks is lovely but i feel like they think im a paranoid mum as hes had the endescope and his stomach wasnt sore or anything like i thought it would be.i know as his mum that its not normal but i really dont know what to suggest to the docs anymore

[alexsCURSEDMUMMY]

try videoing him in bed at night when he's bad and show the video to the paed.

[7up]

ive thought of doing the video thing before!i said that to my mum but never had the guts to actually go through with it because i was worried about the "anxious mother" label

[TwigTwoolett]

video him .. also when he has rough patches and document them .. times and dates

I assume you keep a food diary

NEVER worry about a doctor thinking you are over-anxious / paranoid or any of those negative words we try so desperately hard to avoid being categorised as

you are your child's only VOICE in this .. and you need to stamp and stomp and make yourself heard

consultants are sent to patronisation school .. they also are trained in the main to see patients as their symptoms and not as people (not necessarily a bad thing) .. so it does not affect them

YOU are the only one who cares so deeply about your DS

so if you make yourself a nuisance .. who gives a fuck ... he will get teh attention

such is the nature of the Great British NHS system unfortunately

[7up]

cheers twig, i am definitely kicking up a stink about his other diagnosis when i see the awful paed and when i see the nice one 2days after il tell him ds stomach probs still there. just seems to me that he suffers with a sort of colic? you know therolling eyes, figety, squely, very weird in a toddler isnt it. ive always put it down to the food but as nothing in his diet has changed it must just be him.thanks for your sympathy!