FYI... learning more each day

[Guest guest]

Hello to all,

A bit of background to update those who are new or forgot... Hannah was

diagnosed March 27th 2003 with a rare leukemia called Myelodysplastic syndrome,

treated it with an AML protocol for 10 months due to while in treatments in the

beginning with high dosed chemotherapy the doctors also found her to have some

trisome 21 cells and further testing proved her to have Mosaic Down Syndrome.

fast forward ....

she is currently 6 years 2 months in remission complete and uncomplicated! she

learns at a regular rate as children her age and grade level, high functioning

and newly diagnosed with 2 forms of epilepsy. on keppra 2Xdaily, and added

magnesium after a recent hospital stay.

she had an MRI that also showed an abnormality and they are calling it a

'cavernous hemangioma' non cancerous. with issues at her school (they want her

'homebound schooled' through the hospital via my insurance " ) this homebound

school is 1 hour a day! so the fight begins....her neurologist was so upset she

went and ordered a complete neuropsychological evaluation that tests Hannah for

emotional, physical, mental, and learning- how she learns what she retains

etc... the testing is nearly complete and it shows Hannah to be highly

intelligent and above average to high average in many areas including math she

is on a 6th grade level yet only in the 4th grade soon to be 10 (this Sunday).

her areas of weakness are word oriented; spelling, vocabulary, memory, recall

and retention with words, sequence, left and right confusion, a form of

'stuttering' with the word UM when she has trouble finding her words to use in

normal speech, and also multitasking. so this is frontal lobe and left side

brain effected.

seems her 5-10% trisome cells are all medically effecting her. she will undergo

more testing to see what her EEG looks like and possibly a more detailed MRI and

other neurology tests necessary to get to the bottom of what this is in her

brain and if this is the cause of her epilepsy/migraines, staring spells and

other weaknesses are. figured I would pass along this information.

All in all with what Hannah has gone through medically, emotionally after the

loss of her father, she is a remarkable child and even the neuropsychologist is

learning and interested in her case.

Holly mother to Hannah (almost 10!) mds in remission 6 years and MTDS (she also

has a translocation of her 1 & 19 chromosomes). Blake 18 mild ADHD senior in high

school and heading to the marines this fall!