Ciera

May 12 2006

 
 

Signs & Symptoms

Born at 31 weeks gestation
Weight at birth: 3.5lbs
Length at birth: 16 in.
Current weight: 28lbs
Current length: 36 in.

  • spent 6 weeks in NICU (Northwest Medical on FM1960 in Houston) release with no problems detected
  • eyes started crossing at 2-3 months old
  • Hypotonia detected at 4-5 months old (couldn't hold head up)
  • 1st seizure on October 23, 2006 (5 months old) Grand Mal Seizure
  • Seizures continued (22 total from Oct. 23rd - Jan. 29th 2007)
  • since Feb. 07, Grand Mal Seizures only when sick or fever
  • Last Grand Mal Seizure was April 1, 2008
  • Generalized Seizures started at 8 months old, come every 30-60 seconds (limbs twitch, eyes roll, head drops) last 2-3 seconds - still present
  • Can't sit up, crawl, walk, etc.
  • Won't hold toy, keeps fingers in mouth most of the time
  • Can roll over, get on knees (butt up in air), but can't push up with arms
  • Legs very strong, moving all the time (kicks, holds up, pushes with, plays with feet)
  • Thrusts backwards when held in upright position
  • stopped crying around same time seizure activity started (5-6 months old)
  • Happy all the time, babbles (no words), smiles, laughs
  • 8-9 months old started having swallowing difficulties - lack of desire to eat.  Thickened bottles for awhile, but was still aspirating and not gaining weight
  • G-Button put in Feb. 2008
  • Sole source of nutrition - Pediasure with Fiber via G-tube
  • Developmental Delay - she's about a 4 month old level - per Therapist evaluations

Medications:

    • Phenobarb  20MG/5ML - Takes 11ML 1 x day
    • Keppra  100MG/ML - Takes 3MLs 2 x day
    • Leucovor CA  10MG tabs - Takes 1 x day
    • Clonazepam OD 0.25MG tabs - Takes 1&1/2   3 x day
    • Robinul 0.2MG/ML - Takes 2.75ML every 6 hours

                ***Medications have never decreased her seizure activity

Tests:

  • MRI showed brain developing in order it should (back to front), but showed significant delayed myelination. Said the wire from left to right side of brain is very thin.
  • 2nd Brain MRI showed a small amount of atrophy
  • Muscle biopsy performed to see if she 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 

 


CJ