Welcome Friends!
Isabella M.
Washington
Birth Date - January 17 2003
Main Diagnosis - Neurodegenerative Disease
THEME: exotic birds
Biography
Isabella is an amazing young lady, that has been and continues to face a lot medically and developmentally. Her life passion and love is birds, especially tropical ones. We recently started a foundation to hand-raise small companion birds for other special needs children. We have a ten person board of diverse experts, and are dedicated to changing the lives of other special kids! Isabella is actively involved in the aviary, despite her challenges.
Everything about my daughter is vibrant and beautiful- tropical rain forest gives a good visual for her style.
I try to keep it lighter on the medical and more focused on the good works we are doing,
Isabella Masse Medical History(1/03):
2 month- Microcephaly (brain stopped growing correctly) with structurally normal brain- 4 SD.
5 months- Malrotation of intestines and GERD, elevated lactic acid, pyruvate, and ammonia- GI surgically corrected with Ladd's and fundo.
5 months- Global delays and full early intervention services- OT PT Feeding/Speech
2 years- IQ 67
2-6 years, Hospitalized for a few infections, in full services for global delays, weight gain to 97%. Remarkably happy and friendly disposition- Angleman's and Prader-Willi were considered and both were negative.
Age 6, developed horrible migraines, MRI showed unilateral 3&4 ventricle dilation without obstruction. IQ was measured at 64.
(All in all, fairly medically stable from ages 2-7)
Age 8, spontaneously stopped breathing and required emergency services. ENT discovered scaring in mouth consistent with seizures. EEG was abnormal for generalized and partial epilepsy- intractable seizures (do not respond to eds). *It is my belief that she always had seizures, as many infant episodes were consistent with infantile spasms, and latter episodes atypical absence and brief tonic/myoclonic seizures.* Migraine headaches intensify and require medication. GERD comes back and requires medication. Age 8 Y10 M IQ is measured at 54.
Age 9, Behavior issues continue to intensify, shifting from attention based issues to autistic like behaviors much of the time. 25 pound weight-loss, partly medication induced, but still losing at a slower rate despite calorie loading- weigth dropped from the 97% to 25%. Major cognitive regression, no longer able to spell name or read simple words. Frequent complaints about pain. IQ is measured at 46.
Age 10, Continued loss of cognitive skills and personality changes. Fine motor had a remarkable loss around 12/2012. Sleep disturbances become frequent, often sleeping and waking at irregular times. Her behavior has deteriorated and she now has the coping/processing skills of a 3 year old.
Her Neurologist diagnosed her as neurodegenerave 1/13. In April (2013) we traveled to Pittsburgh to meet with the world expert, Maria Escolar, on pediatric neurodegenerative disease, and she confirmed it.
Isabella's swallowing appears to be impacted now, as taking pills and swallowing is now a challenge. GI is going to scope and biopsy her esophagus two days from now. Feeding tube placement is will happen within the next few weeks, as her weight is now at the 14% and she continues to drop.
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