We are parents to three children with eosinophilic disorders. This is our story so far.
We are Michelle and Steve we have three children, All of them have Eosinophilic Entocolitis (EC,EG,ED)and our middle son also has eosinophilic oesophagutis (EE)accompanied by
Multiple food allergies and multiple drug allergies.
Our eldest also has a reflux of the bowel which means when he eats he needs to go to the toilet straight away, he also has lymphonodular hyperplasia and an autoimmune disorder.
We have one child that has a G-Peg and his main staple is EO28 Extra, our eldest son is also on EO28 via a NG tube he was drinking it but can not manage enough to keep his weight up.
Dealing with this disorder is a 24/7 job as you have to constantly check labels when shopping to see if allergens have been added, we have to deal with sickness and diahorrea on a daily basis as well as tummy pains, dizziness and Joint pains. The children have to take 14 different medications which adds up to a total of twenty plus meds per day.
We attended Great Ormond Street Hospital on a regular basis and the children have to have biopsies and scopes to check the levels of eosinophils and the level of inflammation in their throat and colon etc.
When the children were first diagnosied we felt very isolated as we could not access any information on the condition
we eventually found some other parents and went to america with them to a APFED conferance it was at this conferance we realised that this was a life long illness with out a cure. One returning to the UK we decided to set up a website to help other parents.
Our eldest child has had a major flare up since december and can not tolerate any food at all as of this time. We have found that this is a waxing and waning condition and the children need to keep to a strict restricted diet and continue to take the medication whilst using the elemental feed.
please have a look at the website we have set up http://www.fabed.co.uk
Michelle and Steve