• 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 amy76jo@yahoo.com