Eosinophilic Disease. E.g.i.d. group. An Introduction written by parents

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Sherman Shelton
5 years ago
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www.egid.org.uk Our facebook group link: http://www.facebook.com/home.php?

1 Our facebook group link: gid= Eosinophilic Disease E.G.I.D. Group E.g.i.d. group An Introduction written by parents 0

2 Table of Contents What does this illness mean?... Symptoms:.. Diagnosis:... Cause:... Other Conditions Treatment: The Future:.. e.g.i.d. group What does this illness mean: 1

3 This illness means that there are abnormally high amounts of Eosinophilic Cells( a type of white blood cell) in certain parts of the body. White blood cells are all produced in the bone marrow. Eosinophilic cells are so called because of the bright purple/pinky dye that stains these cells when biopsies are taken and analyzed in a laboratory. Eosinophilic means 'loves eosin'. Eos was also the Greek Goddess of Dawn. There should be no Eosinophilic cells in the food pipe, but the cells are found in small amounts in healthy patients in the lower digestive tract, the bowel. It is only when these cells are found in high amounts that they cause problems. Eosinophilic cells are released when an allergen is found in the body, these cells will then release a toxin to fight the enemy allergen, but these toxins and indeed the cells themselves cause inflammation in the affected part of the body. It's as if these cells go into over-drive. Sometimes the inflammation can be very bad and this results in tissue damage. What is E.G.I.D? Eosinophilic (ee-oh-sin-o-fil-ick) Gastro-Intestinal disorders are a complex and chronic group of disorders. Put simply, Eosinophilic disorders occur when eosinophils (a type of white blood cell) are found in above normal amounts in various parts of the Gastro-Intestinal tract When the body needs to attack an allergen, e.g.: an allergy triggering food or an airborne allergen, eosinophils respond by moving into the area and releasing toxins. If the body produces too many of the eosinophils, they can cause chronic inflammation in the affected area. This can lead to damage to varying levels of the tissue in the affected area. All Eosinophilic disorders are chronic waxing and 2

4 waning diseases. This means that the symptoms and severity can vary on a daily basis. EGID is diagnosed according to the area of the GI tract affected. It is split into 3 main types: Eosinophilic oesophagitis (EE) A disease characterised by elevated levels of eosinophils in the oesophagus. Eosinophilic Gastroenteritis (EG) A disease characterised by elevated levels of eosinophils in the stomach and/or small intestine. Eosinophilic Colitis (EC) A disease characterised by elevated levels of eosinphils in the large intestine (colon) Symptoms: Abdominal pain, can be severe. Nausea and vomiting. Diarrhea (more common). Constipation (less common). Joint pain and/or cramps (due to over-laxity of the joints). Failure to put on weight. 3

5 Poor appetite. Feeling full before finishing a meal. Reflux (food and/or stomach acid coming back up the food pipe into the mouth and does NOT respond to usual treatment including acid suppressing drugs (PPI's)). Chest pain. Bloating or Distention of the tummy. Slow emptying of the stomach after eating. Anemia. Difficulty sleeping. Tiredness. Sore Throat Mouth Ulcers Chest Pain Headache Choking Cramping Difficulty Swallowing (dysphagia) Gagging or Retching Poor Appetite Bloating Eye Shiners (sign of allergy) Red Cheeks (sign of allergy) Eczema Food Impactions (food gets stuck in throat) Myalgia (muscle pain) Unexplained Fevers Irritability Decreased Concentration Blood in stool Malnutrition Behavioural problems -: A Lot of children have this with EGID. (please be patient, imagine yourself with almost constant pain and imagine how you would feel) Diagnosis: 4

6 The only way to diagnose Eosinophilic Disease is through biopsies: Endoscopy (of the food pipe) and/or Colonoscopy (of the bowel). Where the Eosinophilic cells are found in the body, tells the Doctors where the illness is. How many of these cells that are found in the biopsies, tells us how badly the affected organ(s) are. Cause: Frustratingly the cause is mainly unknown. A history of Allergic illness in the family can be a contributing factor. 5

Other Conditions Eosinophilic Cystisis Eosinophilic cystitis is a rare disorder of the urinary bladder, characterized by extensive local eosinophilic infiltration of all layers of the bladder wall,

7 Other Conditions Eosinophilic Cystisis Eosinophilic cystitis is a rare disorder of the urinary bladder, characterized by extensive local eosinophilic infiltration of all layers of the bladder wall, probably induced by a regulatory disorder of the immune system. Eosinophilic pneumonia (EP) A disease in which a certain type of white blood cell called an eosinophil accumulates in the lung. These cells cause disruption of the normal air spaces (alveoli) where oxygen is extracted from the atmosphere. 6

8 Gastroesophageal reflux disease (GERD) A condition in which food or liquid travels backwards from the stomach to the oesophagus (the tube from the mouth to the stomach). This action can irritate the oesophagus, causing heartburn and other symptoms. The Future: More serious illness s can arise from Eosinophilic Disease, and it can affect the lungs, blood and other organs. A child with Eosinophilic Disease will probably have a lower immunity than other children and will pick up infections easily. A simple cold can go on to cause nasty chest infections, and any viral infection can cause a deterioration in many of the symptoms of Eosinophilic Disease. These children are often on many courses of antibiotics. The social aspect of this illness can be very difficult to live with. Imagine trying to explain to a child that they can no longer have a birthday cake or eat what their friends eat. These children have to go through many nasty tests, blood tests, operations, investigations, many hospital stays, and some days they can feel constantly ill. As children get older they will realise that they may feel 'different' from their friends. They may be asked why they have tubes in their tummy or nose, and be asked why they can't 'join in' and eat the food at a party. There will be many A&E visits, and trips to hospitals become routine. Many families will have to travel miles to go to specialist centers around the county in order to find expert consultants who know of this illness. Some of the 7

medications can have side effects. And the illness itself has many others symptoms (not all of them are listed above) more symptoms are being discovered all the time.

9 medications can have side effects. And the illness itself has many others symptoms (not all of them are listed above) more symptoms are being discovered all the time. As the illness is rare, it is hard for people to understand what your child is going through, and hard to understand what the whole family goes through on a daily basis. Research is being done at present on this rare and complex illness, and with awareness and research comes hope. As children mature so do their immune systems. It may be that the child will improve as time goes on, but this may not always be the case. Children with an Eosinophilic Disease will need extra special care from their family and from health professionals to help them. These children are very brave and put up with more in their childhood than many adults do in a lifetime. These children need extra special care, because quite simply, they are extra special. 8

10 Where to find more information, help and support MySpace profile for Eosinophilic Support with pictures, videos, personal blog, interests, information about me and more American Partnership for Eosinophilic Disorders (APFED) is dedicated to patients and their families coping with eosinophilic disorders. gluten-free gorgeous food and excellent support. Suppliers of elemental formulas very helpful. Registered UK charity for support of patients on intravenous and nasal gastric nutrition Make a range of soups and sauces for allergy and intolerance sufferers. All of our foods are free from not only peanuts but all of the main twelve allergens Patient Advice and liason Service. Online version of the PALS service available in hospitals in the UK. Useful resource point. 9

Diarrhea may be: Acute (short-term, usually lasting several days), which is usually related to bacterial or viral infections.

Diarrhea may be: Acute (short-term, usually lasting several days), which is usually related to bacterial or viral infections. Pediatric Gastroenterology Conditions Evaluated and Treated Having a child suffer with abdominal pain, chronic eating problems, or other gastrointestinal disorders can be a very trying time for a parent.