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wow been a bit longer this time since I've posted! so we had our Great Ormond street appointment early december, speciliasts doesnt think McArdles so wants to do MRI scan because of tummy/joint problems, awaiting appointment which should hopefully be early February..always a waiting game with...

the wording is what threw me, not a conclusive line I thought, I googled it too and the Crohns link came up yet again as it always does :( spoke with a lady at Crohns UK and she it can be quite normal for the first lots of scopes to say not Crohns but people go onto have i. I will bring it up...

so the Rhemi appointment is next 22nd October, boy I cant wait, little man been having a bad episode again, another question for you all..I'm getting his notes ready for next week and read through his laparoscopy discharge results he had done last March any thoughts greatly appreciated...

atlast he is having a good day!! woohoo! I dont know if i mentioned before last year around May/June after his colonoscopy we saw an Immunologist who was swaying towards Periodic Fever Syndrome (the inherited one) as i have meditteranean on my side of family but as Spencer wasnt 'spiking'...

Thats how i explain it to the hospital, the whites of his eyes have reid veins, he hates sunlight in his eyes and he complains they hurt along with headaches, opthamologist just said looks like an allergy but i am going to get second opinion, thankyou

We see his Gastro team from Bristols Childrens hospital every 3 months at our local hospital, its the inbetween part thats the problem, when he's having an episode we take him to the hospital and no-one can really help except pass it on to the Bristol team! very frustrating, we was told last...

thankyou for your reply, I live in Cornwall and we are in a postcode lottery, our local hospital has no specialist in childrens diseases so we have to travel atleast 3hours to hospital that does, this is our battle our local doesnt want to refer which i'm sure is monetary related....sorry for...

another update...we saw an opthamologist 2 weeks ago and he said looks like allergic reaction but doesnt know what to, Spencer has been having an episode for 6 weeks now, still no bloody D but in so much pain when going for a poo, skin rashes, ulcers in mouth and on genitals, right knee and...

Dustykat We are awaiting an appointment at Great Ormond Street in London (8hours away from us!) but the waiting list is 6-8months as this is the only speciliast for McArdles, I've left messages for his Gastro team again today as he is so poorly, almost like he has ear/chest infecton but no...

He has had stool tests about 2yrs ago and last March Endoscopy & colonoscopy the Colonoscopy showed blood/mucus but his speciliast was 'sure' it isnt Crohns and diagnosed IBS arrghhhh! feel like I'm pushing on a daily basis, thankyou for your support

Hi Dustykat We are currently awaiting an appointment for him to be tested for McArdles disease which is a rare muscle disease which my grandfather has so he's Gastro team have put on hold seeing him until this has been done, the only symptom relevant to this disease is his walking problems when...

wow just noticed its every 3months I post in here so a cycle of symptoms? he is really bad this week, really bad joints struggling with walking and has a 'spikey' bum as he says, one day just one day soon please for an answer to what is causing my little mans pain

same here with our son, I know when he's bad as he craves ice lollies and lives on them for days, we are still being passed from one doctor to another, and yes so heartbreaking because you know they are in pain, he tells me he has a 'spikey' bum or my tummy hurts and I just KNOW its true jeez...

I was wondering that as he has been having tummy pains again this week his mouth looks awful ulcers on gums & the tongue thing and he's so uncomfortable, seen his Gastro specialist today and they still dont take us seriously, think they wont until he's at an age when he can tell them whats...

well another few months have past since i posted and yes still ongoing, not had blood D since last post but still suffering with tummy/bum pains, alot of knee pains & ulcers over the last few months he's had a 'funny' tongue which a friend of mine said looks like geographic tongue, just...

So my little man was kept in for 48hr observation after he's specialist refused to admit him and I drove straight to the hospital and walked right on in! He had previous to this admittance d with blood and mouth sores, the night he was admitted he had vomitting, his temperature would randomly...

Hahaha Dexky that made me smile....after another long day at the hospital still with no progress! Dustykat...we also saw an immunologist in May and they was thinking Bechets Syndrome but now have decided not! my thoughts are the same if he's still bleeding then there is something going on, when...

well I've not posted in here for a while but am back to the desparation stage :( , my little man's CF test came back normal, he had colonoscopy & laparoscopy in March which showed bleeding but couldnt see where from but specialist pretty sure not Crohns....now we are back to severe tummy pains...

Hey, I have a 2 1/2 year old son who has exact symptoms only difference his have been since day he was born! he has had colonoscopy & endoscopy both came back normal that was 2 months ago and he has been admitted to hospital on two occassions since, we are now awaiting cystic fibrosis test...

anyone had a Laparotomy I have posted on here about my LO whos 2 1/2 before...he's due to have barium swallow in week or so then Laparotomy 30th March as his biopsies were normal, I've been nosing through posts and see that some people have had a few colonoscopys that have been negative but...