Kian

Signs & Symptoms

Prenatal Findings: - Born at 36 weeks, 3 days in NICU 4 days in Pediatrics. High respirations, Low Calcium, Low Magnesium, Low Blood Sugar, Jaundice

Build / Stature: - Large in size, at 12 months old he wore 2 T and bigger clothing, size 5 diapers, 30 lbs


Head: - Extremely large head circumference (began to even out at 12 month check up, but he fits in adult sized hats)

Face: - Fine hair on face, mainly on forehead area, moustache area, and sideburn area

Eyes: - Right eye drift (went away at 10 months); - One odd grey spot in the white area of his left eye; - Eyes tend to become bloodshot (severely) without provocation. This started at approximately 8-9 months; - Very large eyes (but mom has them too)

Teeth: - Large gap between his two front teeth; - Teeth had 2 discolored marks, brown stripes, which are now starting to go away


Skin: - 3 odd light marks (lighter than regular skin pigment) on his back. The smallest one continues to get lighter and lighter (almost white now); - identical rug-burn like (looked like scabs but were NOT) markings on both knees, about 1 inch long. Appeared at 2 months of age, disappeared at 10 months of age with no assistance

Respitory System: - Asthma; - Breathing issues (nothing structurally wrong, not asthma like, not allergen related, but he has high respirations and struggles to breathe even though his pulse ox level is at 100 %; - Laryngomalacia (went away by 11 months of age); - Micro-aspirates on thin liquids, only able to drink thickened things. Fine with all foods


Neurological Structural: - Benign External Hydrocephalus (extra fluid on the outside of the brain)

Neurological Functional: - Seizures (semi-controlled by medications). Have happened stemming from the left side AND right side, and he has had every type except Grand Mall; - Hypotonia (possibly causing breathing issues due to lack of muscle tone in his chest/airway systems??)

Personality: - Generally happy demeanor, will smile and laugh for no apparent reason; - Hyperactive looking movements, Flails arms and legs with no apparent reason WHY

Laboratory Test and Findings: NORMAL TESTS; - First 2 EEG's (one 30 minute, one 3 day); - Blood Sugar; - 5-6 CT Scans; - Approximately 4-5 Chest X-Rays; - Sinus X-Ray; - PH Probe; - Apnea Sleep Study; - Angelman's Syndrome Testing; - Tubor Sclerosis; - Other Chromosomal Testing (the one where they put 2 different colored sets of the same chromosomes together to look for abnormalities.); ABNORMAL TESTS; - Most recent EEG (30 minutes, showed signs of a Left Sided seizure); - MRI showed slower than normal growth of the frontal lobe and some thickened parts of the cortex, but nothing major. Taken at 4 months; - X Chromosome
: TESTS PENDING; - MRS (Creatine)

Contact: Courtney mom to Kian at CourtneyRemy@msn.com

Any troubles with e-mails send to amy76jo@yahoo.com