Looking for pre-teen support in Bay area, CA

[Guest guest]

Hi everyone,

I haven't written in quite a while. Ariana (11, 22mm ACM, RO, EDS) is

really desperate to meet and/or talk to other kids her age who are

" like her " . She is just expressing this for the first time, asking

for statistics about her conditions, and feeling very isolated and

different from her peers. She feels like no one understands what it is

like to feel the the things she does, physically and emotionally, and

*that* is starting to take a toll emotionally. She is very mature for

her age, so she'd probably do well with 10-15 year olds. We're in the

SF Bay area, CA. She might be interested in (supervised) emailing

also, but she tends to get fatigued reading or writing a lot.

Medically, we're still not getting anywhere. I don't need to be told

by another person that she needs to see a Chiari expert. I know that.

We are limited by our insurance (which we pay a pretty penny for), and

her NSG insists that she doesn't need surgery. I thought I liked the

one she's had for the past year. However, after her last visit

recently he reported that she continues to have " a very significant

but ASYMPTOMATIC Chiari malformation. " How can all of her symptoms be

called asymptomatic??!! He also considers her retroflexed odontoid

(which can be seen literally compressing/indenting her brainstem in

MRI images) to be stable. That is a whole separate issue/surgery, but

he feels that also does not need to be addressed. Her CINE MRI last

year showed completely blocked flow posterior and almost completely

blocked anterior. But the NSG said all we need to do is check for

syrinx once a year and " she's good to go " . She had been doing pretty

well for a while. The Neurontin seemed to help *some* with insomnia

and dizziness. But this past week those are both out of control again,

along with back pain, leg weakness, and headache. This almost always

all happens together and is episodic. NO ONE can convince me that it

is not Chiari related, nor has anyone offered a reasonable alternative

explanation . They have tried to say it's depression or anxiety. Um

yes, she probably has that... but it's because she feels like crap and

no one will do anything, not the other way around!

Last night she got on my bed and was talking about all of this and

just cried. She said she knows God has a plan for her life and that

she just doesn't understand why this is part of it. She wants to be

" normal " , wants to play, wants to do PE with all of the other kids.

She doesn't have some sort of psychosomatic thing going on creating

these symptoms. It's bad enough when doctors do that when they can't

find a source for someone's complaints. When there is a known source,

glaring at them in black and white, and they refuse to do anything

about it, it's unforgivable. Sigh.

Thanks,

Beth and Ariana, in CA

Sent from my iPhone