New member introduction

[Guest guest]

hello everyone,

My name is and somehow I found this web group last night. I signed up

hoping to share experience and insight. I don't even know if my daughter's

condition falls under the heading of .

So... lets see what you all think.

My daughter, a, was 18 months old when she was stricken with a cancer

called neuroblastoma.. The way we found out was that over a few days she lost

all her motor skills, her eyes were jiggling, EXTREME EXTREME vertigo and

EXTREME aggitation. We came to find out that her immune system targeted her

tumor but, it in the process cross connected with her brain. Hence, under

the brain being attacked it caused the motor problems and later cognitive and

severe speech delays.

To make a long story short she went through five years of heavy immune

suppression to prevent further brain damage and eventually an experimental

bone marrow transplant (with her own cells) to cure the immune system from

attacking her brain. It's been 2.5 years since the transplant and her brain

is not being attacked. But.... and there's always a but.... there has been

long term damage. All her motor skills are intact but, her learning, speech

and behavior have been nothing less than a challenge.

She's 7 years old and her cognitive is that of a 4 year old and her speech is

around a 3 year old. She's able to get her communication across but, the

sentence structure, articulation, repeating over and over again, and

stuttering hinder her ability to freeflow communication. She has a big dose

of ADHD with OCD and bipolar tendencies. She does have some OT issues but,

they are minimal. She receives OT therapy to help organize her thinking.

Her original psych was excellent in explaining that those that have brain

injury often times have the behavioral problems on top of the " classic " brain

damage issues like cognitive, motor and speech.

She's in a special ed program and receives medication for her behavior.

Without the meds she can't learn, sit down or enjoy being in her own skin.

Her current meds are:

erithomycin, seroquel, clonidine, zyrtec, flonase, flax seed oil,

acidopholus, senna

Overall she's a very animated beautiful little girl that truly faces the

world as if nothing is wrong with her. The one benefit of being sick all her

life is that she really doesn't know anything else. She's also fiesty,

stubborn and charming.

So, does any part of our experience fall into anyone elses??

PS- for the life of me I can't remember a supplement from the vitamin store

that is said to help reverse some brain damage. Anyone here try this with

any sort of success?

Thanks,

, mom to a dx: Neuroblastoma and Opsoclonus-Myoclonus Syndrome

In California

" Sometimes you get shown the light in the strangest of places if you look at

it right "

,mom to -a 7 (nbII with oms 11/96), Kelsey 10, and 14.  Wife

to

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Updates</A>-

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