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• • Introduction
  • Cardiac Defects
  • Education Problems
  • Encouraging Language Development
  • Facial Characteristics
  • Feeding Problems
  • Genetics Issues
  • Immunity
  • Leg Pains
  • Mealtime Management
  • Medical Care
  • Newborn
  • Oral Care
  • Pre-school Intervention
  • Reflux
  • Speech and Language
  • Claiming Benefits
  • Useful Web-sites
  • The (Long) Short Story
  • rESEARCHERS LOOKING FOR ADULTS
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leaflets

In this section we provide a series of online "leaflets" covering a wide range of subjects.

Feel free to print them out, but as a lot of our information is obtained through our close links with the medical fraternity, we ask you to respect the copyright and not reproduce the leaflets (except for your own specific use) without the express consent of Max Appeal! or please give credit as to your source.

Introduction
A syndrome is a collection of findings or symptoms that has been seen recurring over and over again in patients. They are often referred to as congenital defects. Congenital means that you were born w... View Info Sheet >>

Cardiac Defects
We have attempted to explain the issues which people most frequently ask questions about. We would, however, recommend that if you have any queries whatsoever concerning your child's heart condition t... View Info Sheet >>

Education Problems
The education skills problems found in many children with a 22q11.2 deletion are different to those seen in children with other learning problems. The areas which they find difficult and the way these... View Info Sheet >>

Encouraging Language Development
Speech delay and communication difficulties are commonly noted in children with a 22q11.2 deletion. It is important that if you are at all concerned about your child's communication and interaction wi... View Info Sheet >>

Facial Characteristics
The facial characteristics noted are often very subtle and sometimes only apparent when a group of children are together. For example, small low set ears are noted but if your family has large ears th... View Info Sheet >>

Feeding Problems
Difficulty in feeding is common with children with a 22q11.2 deletion. This is otherwise known as dysphagia or difficult swallowing and can result from problems with: moving food in the mouth; transfe... View Info Sheet >>

Genetics Issues
We have tried to address the most common queries asked regarding genetics issues but it is stressed that advice from a geneticist should be sought as genetics is a highly complex and rapidly moving ar... View Info Sheet >>

Immunity
We have worked hard to try to ensure that the information in this leaflet is accurate and we have referred to many experts in the field of immunology. These include Dr Kathleen Sullivan of the Childre... View Info Sheet >>

Leg Pains
This section has been adapted from a research paper produced by Ahmad Al-Khattat, Warren Turner and Patricia Nesbitt on a sample of 16 patients at the Northampton School of Podiatry. Ahmad Al-Khat... View Info Sheet >>

Mealtime Management
Our Feeding Problems leaflet explains some of the causes behind why children have a problem with swallowing and feeding - this leaflet offers advice and tips from parents who have experienced feeding ... View Info Sheet >>

Medical Care
It is important that your child's medical team is led by a doctor who is familiar with DiGeorge Syndrome, VCFS and the 22q11.2 deletion as many of the treatment choices are syndrome-specific. Once a c... View Info Sheet >>

Newborn
View Info Sheet >>

Oral Care
(written with endorsement from Dr. Lowry, Consultant in Paediatric Dentistry, Oral Healthcare Unit at The Freeman Hospital in Newcastle) Children affected with a 22q11.2 deletion may display certai... View Info Sheet >>

Pre-school Intervention
If you have any questions at all about your child's development then do not delay, start to find out about services in your are immediately. It's much easier to dispense with services than it is to ge... View Info Sheet >>

Reflux
Reflux is the process where stomach contents are passed back into the oesophagus. Most people suffer with mild reflux and as adults we can feel it as heartburn. The burning sensation occurs due to the... View Info Sheet >>

Speech and Language
There are a variety of 'oral' problems associated with a 22q11.2 deletion. Resonance, speech, language and feeding difficulties often occur. View Info Sheet >>

Claiming Benefits
Claiming benefits may be easier than you think and if you are entitled to a benefit then claim it! View Info Sheet >>

Useful Web-sites
You will be able to click on hyperlinks to other useful sites and will be able to download information or place an information request on line. View Info Sheet >>

The (Long) Short Story
If your child is short should you be worried? Have you spoken to friends who have tried to re-assure you that you are being a little bit over anxious? “Well, you’re not very tall, are you?” …“Well, wh... View Info Sheet >>

rESEARCHERS LOOKING FOR ADULTS