Sample of schools information sheets.
Eosinophilic Disorders Information Sheet.
Hi my name is XXXX
I have a condition that is called eosinophilic entrocolitis,
What this means is that our tummy gets upset when we eat, it can cause us to throw up ,have diarrahoea, rashes, stomach ache, the works - to much information I know!
Also, any colds, flu or even the smallest infection can setoff a reaction.
It also means that we can not eat some foods like Wheat, (Bread, pizza, etc.) Dairy (Milk, ice cream )
Soya, Gluten and eggs or anything with eggs in.
Sometimes XXX cannot eat any thing at all so he a special tube in his tummy. XXX has also no immunity to chickenpox. If he/she comes into contact with anyone with chickenpox he may need to have a special injection
What is an Eosinophilic Disorder?
THEY ARE NOT JUST AN ALLERGY TO CERTAIN FOODS!! Eosinophilic
disorders require allergens to be eliminated, however it is becoming clearer
that these are not the only cause for the illness. There is little
published research available, however it is now thought that there is an auto
immune involvement and there may be some genetic involvement. The
fact that there are more and more multiple sibling cases seems to be backing
this theory. Due to this being a complex and relatively rare
illness, it will be some time before the exact details are known.
The next few pages are in depth, but need to be to grasp the full range of the
Put simply, an eosinophilic disorder is when a type of white blood cell called an Eosinophil is found In abnormal amounts in the Gastro-Intestinal (GI) tract (This is from the oesophagus down through the stomach and into the large and small bowel). They are given diagnosis dependant on the area of the gastro-intestinal tract affected, these are:
Eosinophilic Oesophagitus - affecting the Oesophagus.
Eosinophilic Gastroenteritis - affecting the stomach and small bowel.
Eosinophilic Colitis - affecting the large bowel / colon.
These are the diagnosis given in the USA. Where more than one area is affected a mixed diagnosis is given. However in the UK, where more than one area is affected the diagnosis is given to reflect this. In the UK therefore, you will hear some different terms such as:
Eosinophilic enterocolitis - affecting the small and large bowels.
Eosinophilic Gastroenterocolitis - affecting the stomach, small and large bowel.
So, what is an Eosinophil?
An eosinophil is a type of white blood cell that is present in all people. It accounts for a very small amount of the total white blood cells, about 4%. When these are present in the body in normal amounts they actually help the white blood cells in fighting infection, parasites and allergens. When Eosinophilic patients’ bodies encounter an infection or allergen these eosinophils multiply in abnormal amounts. They have the opposite effect and actually cause inflammation and cause damage to tissue and nerves in the affected areas. If theses disorders are left untreated they can spread and cause more serious damage to organs and enter the blood stream.
What are the symptoms?
The symptoms vary from patient to patient and can show in any order at any time and in any amount. Some of the symptoms that we have experienced, and this list is not exhaustive, are:
Failure to thrive
Sudden weight loss
Loss of appetite
Obviously, there are many other reasons why someone could have many of these symptoms. It is a question to getting to know the child and any other signs.
How do we diagnose it?
There is only one official way to diagnose an Eosinophilic Disorder, by analysing biopsies from the GI tract . The patient has to undergo two specific tests. These are invasive procedures and will only be recommended where all other avenues have been exhausted:
Colonoscopy (or Gastroscopy) - A Gastroscopy is a medical procedure in which the patient is given pre-medication to clear the bowel and is then nil by mouth. They are then sedated or given a local anasthetic (children normally the latter) and taken to theatre. A scope is then passed up through the back passage, where a camera can look at the large and small bowel to look for any visible signs of inflammation. Small biopsies are taken from various parts of the bowel and sent to the lab for analysis. The pathologist will then look at these to determine the levels of eosinophils present.
Endoscopy This is a similar procedure where an endoscope is passed down the throat to allow the consultant to check for any inflammation / damage to the oesophagus and the stomach. Again, biopsies are taken and sent for lab analysis.
These procedures will only carried out after extensive testing has taken place to rule out any underlying cause. It will usually require a 2 day hospital stay (currently we go to Great Ormond St). Where treatments are failing to bring the condition under control or where symptoms worsen, repeat scopes my be necessary.
How is it treated?
Once a diagnosis has been established, the consultant will discuss the treatment options. Currently there are 3 main treatment paths that are followed:
Elimination diet The patient will have almost certainly already had extensive allergy testing to rule out any more common illness. However not all may have been prescribed an elimination diet. Where this is recommended the patient removes all the offending allergens. After a period of time these will be re-introduced one at a time until a reaction is seen. The number of allergens taken from a diet can vary from patient to patient.
Medication There are no clinical guidelines in the treatment of Eosinophilic Disorders. A number of medications used in the treatment of other GI and/or auto immune disease have had a positive affect in the treatment of Eosinophilic disorders. These range from mild over the counter anti-histamines to powerful immuno suppressive medication in the most serious cases, some of those used are:
Anti-Histamine - These are used in most allergic conditions such as
Hayfever, Asthma Eczma etc… They are used to help relieve the symptoms by
stopping the body from reacting to allergens, Examples used are Ceterizine
Sodium Cromoglicate - Used where a food allergy has already been determined. Given before each meal to prevent histamine being released which prevents the symptoms of the allergy. Given under the trade name of Nalcrom.
Leukotiene (luke-o-try-en) Inhbitors - Used primarily in the treatment of Asthma. Has proven to be successful in relieving the symptoms of other allergic conditions. They will not help to induce remission in Eosinophilic patients but does help to relieve allergic symtoms. Given under the trade name of Montelukast (Singulair).
Amino -Salicylates - This type of medication is used in the treatment
of Inflammatory Bowel Disease (IBD), Crohns and Ulcerative Colitis (UC).
They are anti-inflammatory drugs that help reduce the inflammation in the gut
and prevent flare-ups. Most commonly given in liquid form called
Sulphfasalazine. Because these medicines can cause a decrease in the
normal number of blood cells in the blood, it is necessary to monitor the blood
cell count by way of blood tests atleast every 4
Glucocorticoids (Steroids)- are used in many conditions to suppress inflammation. These are the most effective medication in the treatment of Eosinophilic Diorders. They are initially given in a high dose and then slow tapered off to a lowest possible dose where no adverse reaction is detected. Although by regular blood tests (approx 3 months) to check blood count, kidney function etc.. Bone density also needs to be closely monitored.
Immunosuppressants - Primarily used as a anti-rejection drug in transplant patients,. these are used to reduce the activity of the cells in the immune system. These drugs reduce the production of the white blood cells, which reduces the ability of the immune system to attack the normal tissue. In Eosinophilic patients this can cause a remission in the illness. The full effect of this drug can take months to become apparent, but once working can be taken fro a prolonged period without serious side effects. Blood counts do have to monitored very closely and with some varients (Cyclosporin) maybe as often as weekly. The most common used in auto-immune diseases and IBD is Azathioprine.
Patients with an Eosinophilic condition commonly will have other allergic conditions such as, Asthma, Eczema, Hayfever, Rhinitis etc. Combined treatments will usually be used in the treatment of these associated illnesses.
Elemental Diet - Where the illness persists or there is still failure to thrive, a elemental diet may be recommended to enable the body to absorb all the necessary nutrients without the need to swallow whole foods. A special formula is prescribed built of of Amino Acids (the building blocks for proteins), fats, sugars, vitamins and minerals. These can be given in the short or long term and normally under the supervision of a qualified dietician. Elemental diets can be the sole source of nutrition or in conjunction with a elimination diet. If a patient is unable to take the formula orally, a feeding tube maybe required. If required for a prolonged period, the tube will be inserted through the stomach. As in Callum’s case they may go days without taking any food oraly or just picking over small bits. They can then become ravenous and crave protein, Egg yolk, Red meat etc…
Can it be cured?
There is no cure for Eosinophilic Disorders. They are manageable through diet and treatment, every case will vary in it’s severity. The illness is a waxing and waning disease, this means that the patient can be in remission for months, even years but the illness can return at any time. Over the next few years it is hoped that public and professional awareness will be raised to a level where there can be research into the exact causes for relapse. There is currently too much ignorance in the medical profession over this disorder, with may paediatric consultants unwilling to diagnose and therefore worsening the condition of those patients who are awaiting answers.
One thing that isyet to be examined with this illness is the psychological effects on the patients
The fact that XXX have all been biopsied and diagnosed with the Disorder is testament enough for us that there has to be some form of genetic involvement. This is an avenue we hope to pursue over the coming years through the online support group we have started with another parent ( www.fabed.co.uk ). If you wish to find out more about Eosinophilic Disorders, please visit the site and go to the useful links page. On there are links to APFED and Cincinnati Centre for Eosinophilic Disorders
This leaflet is the property of FABED and any copying or reproducing should carry a credit to www.fabed.co,uk