Website

Overview of all the frequently asked questions




These questions and answers are collected for and by people with a rare condition ( ALGEMEEN
MALAN) and professional experts around  ALGEMEEN
MALAN.

In doing so, we believe to be a helpful resource for those affected by  ALGEMEEN
MALAN in their search for answers. Rare, but strong together!


Diagnosis and management of Cornelia de Lange syndrome > Introduction
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need?
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Feeding and Dental Difficulties
Ask the expert

Nissen Fundoplication

Ask the expert

Dental Implants

Ask the expert

Medical Needs at School: Feeding, schools, nursing

Ask the expert

Dietary considerations for reflux

Ask the expert

Effects of Tegretol on mouth

Ask the expert

Pulling out feeding-tube buttons

Ask the expert

Teeth Growth

Ask the expert

Ketogenic Diet

Ask the expert

Sedation for dental work

Ask the expert

Teething

Ask the expert

Gastroenterology (Feeding)

Ask the expert

Nipple Feeding

Ask the expert

C. Difficile Treatment

Ask the expert

Caloric intake via feeding tube

Ask the expert

Introducing Solid Foods

Ask the expert

Slow Weight Gain

Ask the expert

Suck/Swallow/Breath - Feeding Issues

Ask the expert

Teeth Grinding

Ask the expert

Constipation and G-Tubes

Ask the expert

Canker Sores

Ask the expert

Dental/Grinding/Sliming

Ask the expert

Oral feeding and G-tube weaning

Ask the expert

Anesthesia for dental work

Ask the expert

Mic-key site irritation (Site care, gastrostomy button, yeast infection)

Ask the expert

Teeth Grinding "Bruxism"

Ask the expert

Obesity

Ask the expert

Pulling Eye Teeth

Ask the expert

Lactose Intolerance (Formula Alternatives, Fat Intake)

Ask the expert

Weight Gain

Ask the expert

Brittle Bones

Ask the expert

Missing Teeth

Ask the expert

Rice Cereal Allergy

Ask the expert

Feeding and Dysphagia

Ask the expert

Allergy to Formula

Ask the expert

Thinning of the hair

Ask the expert

Wisdom Teeth-Impacted

Ask the expert

Behavior/Dental/Molars

Ask the expert

Behavior, Picking, Pica

Ask the expert

Teeth Exfoliation

Ask the expert

G-tube and vomiting

Ask the expert

Feeding Tubes

Ask the expert

GI - Gas and Prilosec

Ask the expert

Sensory Integration and Feeding

Ask the expert

Receding gums (Wisdom teeth, Gingival grafts)

Ask the expert

Behavior/Diets

Ask the expert

Reflux and Tooth Decay

Ask the expert

G-tube and Formula

Ask the expert

Diet for feeding issues with Reflux

Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Ability to move around and manipulate the environment
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > Weight Management in Adulthood
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > How are the Organs Affected in Adults with CdLS?
Diagnosis and management of Cornelia de Lange syndrome > What medical care may a child with CdLS need? > Adult medical Follow-up > Risk of Cancer in CdLS
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS...
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > Intestinal malrotation
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > Senses
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Diagnosis and management of Cornelia de Lange syndrome > Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Executive Function
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Sensory processing
Diagnosis and management of Cornelia de Lange syndrome > Cognitive and behavioural characteristics in CdLS > Social functioning including ASDs
Diagnosis and management of Cornelia de Lange syndrome > Planning for best quality of life > Medical Care transitioning
Diagnosis and management of Cornelia de Lange syndrome > Family Empowerment
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria > Other genes
Diagnosis and management of Cornelia de Lange syndrome > Moleculair diagnostic criteria > Mosaicism
Diagnosis and management of Cornelia de Lange syndrome > Diagnostic approaches > diagnosis of CdLS prenatally (before birth)