Overview of all the frequently asked questions
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Introduction
What medical care may a child with CdLS need?
What medical care may a child with CdLS need? > Paediatric Medical Care
Chiari Malformation
Thalassemia
Recurrent infections
Tracheomalacia
Surgical Weight Limit
Testicular surgery
Retracted Testicle
Dehydration
IV protocol
Urine Odor
Fontanel surgery (Craniosynostosis)
Flu Shots
Developmental Delay, Mental Retardation
Skin breakdown
Microcephaly
C. Difficile Treatment #2
Right side weakness
Oxygen levels
Pancreatitis
Chicken Pox Vaccine
Pulmonary stenosis
Circumcision
Neonatal Hypertension
Toilet Training for Loose Bowels
Colic
Toilet Training
Cyclical Vomiting and Abdominal Migraines
Immune System
Cardiology
Colon
Reflux and Allergies
Urinary Tract Infections
Treatment of Undescended Testicles
Hypertension
Smallpox Vaccine/Immunization
Urinary Tract Infections
G-tube Falling Out
What medical care may a child with CdLS need? > Growth in Childhood
What medical care may a child with CdLS need? > Feeding and Dental Difficulties
Nissen Fundoplication
Dental Implants
Medical Needs at School: Feeding, schools, nursing
Dietary considerations for reflux
Effects of Tegretol on mouth
Pulling out feeding-tube buttons
Teeth Growth
Ketogenic Diet
Sedation for dental work
Teething
Gastroenterology (Feeding)
Nipple Feeding
C. Difficile Treatment
Caloric intake via feeding tube
Introducing Solid Foods
Slow Weight Gain
Suck/Swallow/Breath - Feeding Issues
Teeth Grinding
Constipation and G-Tubes
Canker Sores
Dental/Grinding/Sliming
Oral feeding and G-tube weaning
Anesthesia for dental work
Mic-key site irritation (Site care, gastrostomy button, yeast infection)
Teeth Grinding "Bruxism"
Obesity
Pulling Eye Teeth
Lactose Intolerance (Formula Alternatives, Fat Intake)
Weight Gain
Brittle Bones
Missing Teeth
Rice Cereal Allergy
Feeding and Dysphagia
Allergy to Formula
Thinning of the hair
Wisdom Teeth-Impacted
Behavior/Dental/Molars
Behavior, Picking, Pica
Teeth Exfoliation
G-tube and vomiting
Feeding Tubes
GI - Gas and Prilosec
Sensory Integration and Feeding
Receding gums (Wisdom teeth, Gingival grafts)
Behavior/Diets
Reflux and Tooth Decay
G-tube and Formula
Diet for feeding issues with Reflux
What medical care may a child with CdLS need? > Ability to move around and manipulate the environment
What medical care may a child with CdLS need? > Pain and Behaviour
What medical care may a child with CdLS need? > Puberty
What medical care may a child with CdLS need? > Adult medical Follow-up
What medical care may a child with CdLS need? > Adult medical Follow-up > Can individuals with CdLS have children?
Sperm Production
Sexuality
Male Sex Hormones
Genitourinary Issues
Irregular Menstruation
Heredity and level of affectedness with CdLS
Menstruation
Body odor and bloody diaper
Birth Control: Depo-Provera vs. the patch, Premenstrual symptoms
Recurrence in Offspring (Fertility)
Puberty/Birth Control
Menstrual Cycle
Menstruation
Birth Control and Weight Gain
What medical care may a child with CdLS need? > Adult medical Follow-up > Weight Management in Adulthood
What medical care may a child with CdLS need? > Adult medical Follow-up > How are the Organs Affected in Adults with CdLS?
What medical care may a child with CdLS need? > Adult medical Follow-up > Risk of Cancer in CdLS
Health difficulties in CdLS...
Health difficulties in CdLS... > Gastrointestinal Problems
Health difficulties in CdLS... > Gastrointestinal Problems > Malrotation; the intestines (or viscera) are twisted
Health difficulties in CdLS... > Gastrointestinal Problems > Constipation of the bowels (Obstipation)
Health difficulties in CdLS... > Gastrointestinal Problems > Reflux
Barrett's esophagus
Nissen Fundoplication
Nissen Fundoplication Undone
Abdominal pain
Dietary considerations for reflux
Life Span of Nissen Fundoplication
GI Issues
Gastroenterology-Bile
Reflux - When to Test
Reversing a Nissen Fundoplication
Gastroenterology (Feeding)
GI Medication Potency
G-tube Removal
Prilosec Side Effects
Constipation and G-Tubes
Fundoplication consideration
Hiatal Hernia Treatment
Bone Pain
Nexium Use
Biopsy and reflux meds
GI Medications
Feeding and Dysphagia
Reglan Use
Weight gain and CdLS
Fundoplication Risks
Colic
GI Issues related to Mouth Odor/Teeth Darkening
Fundoplication Alternative
Feeding Tubes
Reflux and Allergies
Asthma
GI - Gas and Prilosec
Constipation
Reflux and Tooth Decay
G-tube and Formula
Diet for feeding issues with Reflux
Chronic GI Pain
Hip Issues (Back arching)
Health difficulties in CdLS... > Senses
Health difficulties in CdLS... > Senses > The eyes and the visual system
Cloudiness of the Cornea
Cortical Vision Impairment
Strabismus Surgery
Eye discomfort
Breaking eye glasses, Behavior
Eyes-Excimer Laser Surgery
Detached Retina (Myopia, Nearsightedness)
Nystagmus
Eye Infection
Ptosis Surgery (Blepharitis, Sties)
Blepharitis
Ptosis
Ptosis surgery
Keeping Glasses On
Ptosis Redo
Dysgraphia
Health difficulties in CdLS... > Senses > Ears and hearing
Health difficulties in CdLS... > Senses > Mouth, nose and throat
Nasal Polyps
Treatment Options for Small Jaw
Submucous Cleft Palate Surgery
Prevalence of cleft palate in CdLS
Canker Sores
Pulling Eye Teeth
Frenectomy
Recurring Sinus Infections/Nasal Polyps
GI Issues related to Mouth Odor/Teeth Darkening
Sleep Difficulties
Cleft Lip and Palate
Cleft palate surgery
Asthma
Health difficulties in CdLS... > The musculoskeletal system
Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Health difficulties in CdLS... > The musculoskeletal system > Lower limb abnormalities
Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Health difficulties in CdLS... > Autonomic nervous system
Seizures
Migraines
Ketogenic Diet
Tethered Spinal Cord
Seizure Onset Age
Seizure Activity
Seizure Medication
Insomnia
Seizures and Age
Fontanel surgery (Craniosynostosis)
ADHD
Unsteadiness
Medications - Seizures
Central Apnea
Seizure auras
Medications Reaction
Precocious Puberty
Behavior medication side effect
Neuropathic Pain/Refusal to Walk
EEG- Brain Wave Activity
Tethered Spinal Cord
Health difficulties in CdLS... > Sleep
Cognitive and behavioural characteristics in CdLS
Cognitive and behavioural characteristics in CdLS > Intellectual Disability
Cognitive and behavioural characteristics in CdLS > Executive Function
Cognitive and behavioural characteristics in CdLS > Sensory processing
Cognitive and behavioural characteristics in CdLS > Adaptive behaviour in CdLS
Cognitive and behavioural characteristics in CdLS > Self-injurious and aggressive behaviour
Cognitive and behavioural characteristics in CdLS > Repetitive behaviour
Cognitive and behavioural characteristics in CdLS > Social functioning including ASDs
Cognitive and behavioural characteristics in CdLS > Anxiety
Cognitive and behavioural characteristics in CdLS > Communication and language
Planning for best quality of life
Planning for best quality of life > Medical Care transitioning
Family Empowerment
Moleculair diagnostic criteria
Moleculair diagnostic criteria > Other genes
Moleculair diagnostic criteria > Mosaicism
Moleculair diagnostic criteria > Familial recurrence risk
Diagnostic approaches > diagnosis of CdLS prenatally (before birth)
