Hi there,
My son was diagnosed with this at Great Ormond Street or Eosinophilic infiltrate was found in an endoscopy and colonoscopy and the treatment was an exclusion diet and steroids - we rejected this diagnosis at the time as they told us there was no cure and have tried endlessly to find someone with a magic answer, someone who could find and treat the cause rather than just manage the symptoms. His symptoms have waxed and waned over the years and increased in severity and changed. He now is being seen by a hospital therapist referred because of a somatic motor tic in his legs - his legs suddenly started moving up and down without him having any control of them - the consultant who saw him said this was classic anxiety. Of course there is anxiety with being so ill all the time and being on horrible diets etc. so therapy is important for him. However, this therapist is now insisting that all his symptoms - mouth ulcers, stomach aches, rashes, chronic fatigue, changes in mood, joint pains, diarrhoea, constipation have no physical underlying cause. I have subsequently done a lot of research on Jacob's medical file which is huge and looked up properly all of the medical terms and medication mentioned by various consultants since 2006 and 2016.
This research, of course brought me back to the original diagnosis from Great Ormond Street and then I found FABED. At the same time I found an article that linked Tourettes Syndrome to a sensitivity to gliadin protein and explored the links between leaky gut and tourettes.
Can anyone tell me whether their children suffer from nervous twitches?
Thank you so so much for your help.
