KAYLEE’s medical condition is: missing 50% of white brain matter & Epilepsy & Autism
KAYLEE’s Diagnosis and meanings
Autism -
Epilepsy – Seizure disorder
Static encephalopathy – abnormal brain function that is not getting worse/Permanent or unchanging brain damage
Encephalopathy — a term for any diffuse disease of the brain that alters brainfunction or structure
Infantile Cerebral Palsy — a nonprogressive central motor disturbance of varied Etiology
Ataxia Cerebral Palsy – affects balance and depth perception, poor coordination and walk unsteadily with a wide-based gait, poor control of the muscles of the throat, mouth, and tongue, sensations, such as touch.
Brain malformation — An affliction in which some part of the brain is misshapen or
Macrocephaly — Abnormal largeness of the head
Hydrocephalus ex vacuo –an abnormal buildup of cerebrospinal fluid in the ventricles of the brain where brain tissue is missing
Developmental delay — life-long disabilities attributable to mental and/or physical
Impairments
Global developmental delay – deficits in at least two of four domains: speech, cognition, social, and self-care
Trunk weakness – weak muscles in and around the torso of the body
Gait Abnormalities — are unusual and uncontrollable problems with walking
Oral motor dysphagia — difficulty in swallowing
Esotropia — Cross-eyed (Better)
Nystagmus — Rapid rhythmic repetitious involuntary (unwilled) eye movements (Better)
Strabismus – lazy eye – the visual axes of the eyes are not parallel and the eyes appear to
be looking in different directions (Better)
Myopia — Nearsightedness, the ability to see close objects more clearly than distant
objects. Glasses prescription is now a -4.0 (4/27/09) Her sight is a – 5.0
MRI Shows
Missing 30-50% of the white brain matter though out the brain
Marked thinning of the corpus callosum – Thinning of the connections between the left
and right cerebral hemispheres.
The corpus callosum is shown to be very thin on an MRI and doesn’t show up on a CT scan at all.
Marked ventriculomegaly — gross enlargement of a ventricle of the brain, as by
hydrocephalus
Insult to the brain — A traumatic injury to the brain (such as going without oxygen before
birth)
PAST DIAGNOSIS
Failure to Thrive — don’t receive or are unable to take in, retain, or utilize the calories
needed to gain weight and grow as expected.
Acid reflux — upward ejection of acid from the stomach into the esophagus causing pain
Myopia – Nearsightedness. Legally blind. Glasses prescription was a -7 (20/650) in 2005, then a -5.5 in 2006, then -4 in 2007, 3.0 (07/08/08)
Surgeries & Hospitalizations & Test
08-03-10/08-07-10 Hospital stay expected seizure and dehydration
05-25-10 EKG (normal)
04-17-10 4th Seizure just an ER visit
10-05-09 ABR Hearing test (put to sleep for this)
09-04-09 Seizure — in hospital overnight for 2nd(lasted 1hour 15 mins) and 3rd(lasted 10mins) seizure
09-04-09 CT scan — same
08-21-09 MRI
07-10-09 Strabismus surgery
05-11-09 Seizure — in hospital overnight for 1st seizure
05-11-09 CT scan – no bleeding on the brain (it was OK)
05-12-09 EEG — Abnornmal still shows suizure activity on the brain
04-27-09 CT Scan — unchanged since 9-15-005 except mild mucoperiosteal thickening in the ethmoids
07-18-07 EEG
07-02-07 ABR hearing test 2nd
12-10-06 GI infection (she spent 2 ½ days)
10-25-06 Tubes in ears & ABR hearing test
03-10-06 Strabismus & Endoscope
02- -06 Barium swallow study
09-15-05 CT Scan
05-27-05 MRI
12-11-04 RSV (she spent a total of 7 days and some time in ICU)
Blood Test
02-15-06 Chromosome Analysis
02-15-06 Blood Acylcarnitine
02-15-06 Plasma total lipid
02-03-06 Upper GI
04-18-05 Carnitine
04-14-05 Amino Acids
Jennifer, have only just skimmed Kaylee’s blog, but what a wonderful thing you have here, and a beautiful little girl! I’m so very glad to have spoken with you today, and sincerely hope Kaylee has a dream cometru thru the Kids Wish Network. Being that I was the first grandchild in our family, followed by my cousin Shannon a few years later, who happened to be born in the ambulance on the way to the hospital & was delivered by the drivers wife ( 1970′s) she didnt clear his airway & the oxygen delay caused him to have cerebral palsy, he was an angel on earth that was taken from us 5 yrs ago. These children are a gift, and i can tell you cherish your Kaylee.
God Bless,
Amber Arnold ( lady you spoke with for KWN wish referral)