Ask the Expert
For parents, caregivers, health care providers, and teachers, concerns and questions often arise in regards to the care and well-being of individuals with CdLS.
Our Ask the Expert service allows users to email their questions for response from members of our Clinical Advisory Board, Professional Development Committee or Educational Advisory Group. Whether you are seeking assurance about development, have concerns about medical issues or have questions about best practices for communication, no question is too big or small to ask.
Legal Disclaimer: Please take note that the CdLS Foundation's Ask the Expert service is comprised of volunteer professionals in various areas of focus. Response times may vary and a response is not guaranteed. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child's personal physician, psychologist, educational consultant, or social worker can deliver.
A
- ADHD (and medication)
- ADHD (diagnosis)
- Abdominal Pain
- Abdominal Pain (lower)
- Acid Blockers
- Aging
- Allergy (to formula)
- Anemia 1
- Anemia 2
- Anesthesia (timeline)
- Anesthesia for Undescended Testicles
- Ankyglossia (Tongue-tied)
- Anti-anxiety Medication
- Appendix
- Asthma
- Ataxia
- Ataxia 2
- Auditory Testing
- Raynaud's, Acrocyanosis
- Reflux and Allergies
B
- Babbling
- Barium Swallow
- Barrett's Esophagus
- Behavior (aggression)
- Behavior (and diet)
- Behavior (compulsive)
- Behavior (cyclical patterns in)
- Behavior (destruction of toys)
- Behavior (pacing)
- Behavior Medications
- Behavior Medications 2
- Behavior Plan Considerations
- Behavior: OCD, withdrawal, anger, sleeping
- Bile (coming up)
- Birth Control (female)
- Birth Control and Weight Gain
- Birth Control: Depo-Provera vs. Patch
- Biting Prevention (self injury)
- Bladder Control
- Blepharitis
- Blood Replenishment
- Blue Extremities
- Body Odor/Blood in Diaper
- Bone Age
- Bone Pain
- Botox Injections
- Bowel Movement (painful)
- Brittle Bones
- Brittle Bones 2
C
- C. Difficile
- C. Difficile Treatment
- C. Difficile Treatment 2
- Caloric Intake
- Canker Sore
- Car Seat
- CdLS - Syndrome, Disease or Disorder?
- Central Apnea
- Chiari Malformation
- Chicken Pox Vaccine
- Cleft Lip
- Cleft Palate (prevalance in CdLS)
- Cleft Palate (surgery)
- Coarctation of the Aorta
- Cognitive Testing
- Colic vs. Gastrointestinal Issues
- Communication Devices
- Constipation
- Constipation 2
- Constipation 3
- Constipation 4
- Cord Blood
- Cornea (cloudiness of)
- Cortical Vision Impairment
- Craniosynostosis (premature fusion of the fontanel)
D
- DSM IV AXIS Diagnostic Code for CdLS
- Dehydration
- Dental - teeth discoloration
- Dental Grinding and Sliming
- Dental Health: gingivitis, oral ulcers, bleeding gums
- Dental Implant 2
- Dental Implants
- Dental Pain (and self injury)
- Dental Work (anxiety and sedation)
- Detached Retina
- Development Issues
- Diaphragmatic Hernia
- Diarrhea: BRAT (Bananas, Rice, Applesauce, Toast) Diet for
- Discrete Trial Learning
- Duplication 3q Syndrome (and similarities to CdLS)
- Dysgraphia
E
- EEG (brain wave activity)
- Ear Drum Perforation/Earwax
- Ear Fluid
- Ear Problems
- Ear Tubes
- Ear Tubes (duration of)
- Ear Tubes 2
- Elavil (side effects)
- Encopresis (fecal soiling)
- Excimer Laser Surgery (LASIK)
- Eye Infection
F
- Failure to Thrive
- Feeding (and difficulty swallowing)
- Feeding (difficulty with solids)
- Feeding (introducing solid foods)
- Feeding Issues (breathing, sucking, swallowing difficulty)
- Feeding Tube (after fundoplication)
- Flatulance
- Flatulance (and reflux)
- Flu Shot
- Foreskin (retraction)
- Fractures
- Frenectomy
- Fundoplication (alternative to)
- Fundoplication (coming undone)
- Fundoplication (risks)
- Fundoplication (timing of)
G
- Colic vs. Gastrointestinal Issues
- G-tube (falling out/breaking)
- G-tube Inflamation
- G-tube Removal
- G-tube and Vomiting
- Gastroesophageal Reflux (and diet)
- Gastroesophageal Reflux (and diet) 2
- Gastrointestinal Pain (chronic)
- Genitourinary Issues
- Glasses (breaking)
- Glasses (keeping on)
- Growth Hormones
- Growth Hormones (side effects)
- Growth Hormones 2
- Growth Hormones 3
- Growth Hormones 4
H
- Hair Pulling 3
- Hair Pulling
- Hair Pulling 2
- Hearing - Flat Tympanograms
- Hearing Aids
- Heredity and Level of Affectedness with CdLS
- Hiatal Hernia
- Hiatal Hernia Treatment
- Hip Issues with Back Arching
- Hip Rotation and Gait
- Hip Subluxation
- Hirschsprung Disease (colon problems)
- Hormone Therapy (male)
- Hyperactivity and Attention
- Hypertension
- Hypertension (Neonatal)
- Kidney Reflux (Hydronephrosis)
I
- IQ Testing
- IV Protocol
- IVF (In Vitro Fertilization) and CdLS
- Immune System
- Incontinence
- Infections (recurrent)
- Insomnia
M
- Malrotation
- Malrotation (recurrence)
- Malrotation Surgery
- Massage Therapy
- Medical Needs at School
- Medication Potency
- Medication Reaction
- Melatonin
- Melatonin 2
- Melatonin 3
- Menstruation (irregular)
- Menstruation (irregular)
- Menstruation (irregular) 2
- Menstruation 1
- Mic-key Button (pulling out)
- Mic-key Site Irritation
- Microcephaly
- Microcephaly in Prenatal Ultrasound
- Migraines
- Miralax
- Miscarriage
- Missing Teeth
- Mood Swings
- Mouth Odor
- Mouthing
N
- Nasal Polyps
- Neuropathic Pain
- Nexium
- Nipple Feeding
- Nissen Fundoplication (life span of)
- Nissen Fundoplication (reversal)
- Nitrous Oxide (for dental work)
- Nonverbal Communication
- Nystagmus
- Sinus Infections and Nasal Polyps (recurrence)
O
- Obesity
- Obsessive-Compulsive Behavior
- Occupational Therapy
- Occurrence of CdLS (by sex)
- Oral Feeding (with G-tube weaning)
- Oral Motor Apraxia
- Orthopedic Sitting Positions
- Oxygen Levels
P
- Pain (possible sources of)
- Pain Medication (post-operative)
- Pancreatitis
- Penis Size
- Perseverative Behavior
- Pica
- Prilosec (and thinning hair)
- Prilosec (side-effects)
- Progressive Condition
- Prosthesis
- Proton Pump Inhibitors (GI medications)
- Ptosis
- Ptosis Surgery
- Ptosis Surgery (redo)
- Ptosis Surgery 2
- Puberty (female)
- Puberty (precocious)
- Pulmonary Stenosis
R
- Raynaud's Rhenomenon
- Raynaud's, Acrocyanosis
- Reading Programs
- Receding Gums
- Recurrence
- Recurrence (Germline Mosaicism)
- Recurrence (in people with CdLS)
- Recurrence Risk (with different partner)
- Reflux (testing)
- Reflux and Allergies
- Reglan
- Respiratory Arrest
- Rice Cereal Allergy
- Risperdal
S
- Scoliosis
- Secretin
- Seizure Medication (2)
- Seizures
- Seizures (age of onset)
- Seizures (and aging)
- Seizures (auras)
- Seizures (duration of)
- Seizures - Medication
- Selective Mutism
- Sensory Integration and Feeding
- Sexuality
- Sinus Infections and Nasal Polyps (recurrence)
- Skin Conditions
- Sleep (too much)
- Sleep Difficulties
- Sleep Difficulties (medication for)
- Sleep Difficulties 2
- Small Jaw (treatment options for)
- Smallpox Vaccine
- Speech
- Speech (and communication device)
- Speech 2
- Sperm Production
- Staring (and mouthing)
- Strabismus Surgery
- Submucous Cleft Palate Surgery
T
- Teeth (extracting)
- Teeth (growth)
- Teeth Exfoliation
- Teeth Grinding
- Teeth Grinding 2
- Teething
- Teething 2
- Tegretol (effect on gums)
- Teratogens
- Testicle (retracted)
- Testosterone Injections
- Tethered Spinal Cord
- Tethered Spinal Cord 2
- Thalassemia
- Toe Walking
- Toilet Training
- Toilet Training (and loose bowels)
- Tooth Decay (and extraction)
- Tracheomalacia
- Trazodone (side effects)
- Tube Feeding (and nutrition)
- Tube Feeding (caloric intake)
- Tympanomastoidectomy
U
- Undescended Testicles
- Undescended Testicles 2
- Urinary Tract Infections
- Urinary Tract Infections (recurring)
- Urine Odor
W
- Walkers
- Walking (painful)
- Weakness (on one side of body)
- Weight Gain
- Weight Gain (lack of)
- Weight Gain (slow)
- Weight Gain (slow) 2
- Weight Gain (sudden)
- Weight Gain 2
- Weight Limits for Surgery
- Wisdom Teeth (impacted)
