Diagnosed on May 17
"Worster Drought Syndrome"
Symptoms of the
feeding, couldnt stay awake to feed, weak
- Completely non-verbal, some meaningful sounds.
- Still requires pureed food aged nearly 8,
although able to eat some soft foods
- Drooling, improved from 4 years of age.
- Teeth not properly erupted, delayed teething
for both primary and secondary. (Cross bite as
- Failure to thrive diagnosed at 5 weeks
- Severe Global Apraxia
- Frequent ear infections (5 sets of tubes)
- Receptive language and Reading ability at age
- Normal birth, with
2 apneas in first 24 hours
- Birth weight 2 pounds lower than expected given
family history etc.
- Sleepy baby, noted to be unusually
hyperreactive in neonatal ward.
delayed swallow, with abnormal tongue movements.
- Hypotonic with dystonic spasms
- Once bottle-fed became unusually sleepy, woken
for feeds, never cried when he woke.
- Gross motor delays, sat at 10 months, crawled
on tummy at 12months, hands and knees at 14
months, walked at 22months.
- Fine motor delays, aged nearly 8 still unable
to write name with pencil.
- Velopharyngeal Insufficiency
- Sensory integration Dysfunction
- Low set ears
- Vision difficulties, possible ocular motor
- Long thin tapered fingers with unusual bent
over tips and abnormally formed nails (Ive
never cut them in 8 years, but they dont
- Low hairline
- Fine Sparse hair
- Hairy stripe on spine, dimple above buttocks.
- Flat feet
- Unusually placid boy
- Friendly and has great Social skills
- Concepts as measured by CELF testing age
- CAT (brain)
- Ultrasound (brain and bladder)
- FISH (looking for 22q deletion, Williams
syndrome, Angelmans Syndrome) x 2
- Urine testing looking for metabolic disorders
- Muscle biopsy looking for Muscular dystrophy.
mom to Philip at
troubles with e-mails send to