CJ

May 15 2007

 
 
Signs & Symptoms

B
orn at 31 weeks gestation
Weight at birth: 4.8lbs
Length at birth: 17 in.
Current weight: 22lbs

Current length: 31 in. 
  • spent 6 weeks in NICU (Sprindale, AR) 
  • NICU detected occasional tremors in limbs, but said not seizures
  • Release in good health, strong, no signs of problems like sister Ciera
  • Tremors stopped after two months old
  • Made all milestones up to 4-5 months old (held head up, strong, no crossing of eyes)
  • Twitch-like seizures started at 5-6 months old
  • EEG showed Myocolonic Seizures
  • Seizures come every few seconds (limbs twitch, eyes roll, head drops) last 2-3 seconds - still present
  • stopped crying around same time seizure activity started (5-6 months old)
  • Happy all the time, babbles (no words), smiles, laughs
  • Learned to roll over after 1 yr. old
  • Can't sit up, crawl, walk, etc.
  • Legs very strong, moving all the time (kicks, holds up, pushes with, plays with feet)
  • Arms strong, holds toys (drops from seizure though)
  • Thrusts backwards when held in upright position
  • 8-9 months old started having swallowing difficulties. 
  • Sole source of nutrition - Pediasure with Thick-it (must be thickened)
  • Developmental Delay - he's about a 4-5 month old level - per Therapist evaluations

 Medications:

  • Keppra 100MG/ML - Takes 0.8MLs 2 x day
  • Clonazepam OD 0.25MG tabs - Takes 1&1/2  3 x day
  • Leucovor CA 10MG tabs - Takes 1 x day

    ***  Clonazepam controlled his seizures for the first two weeks, only having a couple a day, then gradually they returned to every few seconds, even with increase in dosage.

 Tests:

  • MRI only shows mildly delayed myelination
  • Skin biopsy performed to see if he had a Mitochondrial Dysfunction - Negative
  • Idiopathic Cerebral Folate Deficiency - Negative
  • Cromizones - Normal
  • All labs - Normal

Arkansas Children's Hospital says they have tested her for everything they can and EVERYTHING has come back "NORMAL".

Ciera and C.J. were born 12 months and 3 days apart (same mother/father).  They were both born premature (both born at 31 weeks gestation), and seemed "normal" until seizures started at 5 months in each of them and other problems followed.

Contact: Melissa mom to Ciera at melissalaw2020@yahoo.com
Website: http://www.caringbridge.org/visit/ciera.cj.davis

Any troubles with e-mails send to swanusa@undiagnosed-usa.org

 


Ciera