New to lists, mom with questions

[Guest guest]

Hi,

I just joined both lists a few days ago and have been wading through

all of the information. I thought I would explain our situation and

see what kind of feedback I get. I realize most people on here aren't

medical professionals, so I will take that into account. I'm sending

to both lists even though it's about my daughter because those of you

who are adults with the condition could probably help me as well .

I would appreciate you taking the time to read and any help/

information you could offer.

My daughter just turned 9 in October and got diagnosed with ACM 1 in

the fall of 06, around the time she turned 8. That summer, when she

was still 7, she had finally been sent to a pedi. neurologist because

she had been having pretty significant, daily dizziness for months by

then. She would be at her desk at school and have to put her head

down because " everything was spinning " . This child is a brilliant

student and was definitely not having school avoidance issues. We had

her eyes checked, and she only had very mild far-sightedness. At the

neurololgist, they chose to focus instead on her weight, which has

been an issue since infancy. She has had every kind of test there is,

supposedly, and no one can figure out why she doesn't gain weight.

She gets taller, but she hasn't gained weight, more or less, for about

five years!! Her BMI is only 12.5. Yes, it is hugely concerning to

us, but the point is, that isn't why she was there, and it wasn't a

new problem. Sometimes she does refuse to eat (even as an infant),

but other times she eats normally, even a lot, and the times when she

eats the most she actually LOOSES weight! So, they did orthostatic

blood pressures on her, and she failed those. The next thing I knew,

they said I couldn't take her home, that she had to be admitted to the

hospital. But it wasn't for the neurological problems that we took

her to a NEUROLOGIST for. They were admitting her to an adolescent

eating disorders unit for ANOREXIA at age 7!! I was in shock, but at

the same time I thought maybe this way someone would finally get to

the bottom of her eating issues, so I went along with it. The doctor

said her dizziness was probably just because she didn't have enough

nutrients, and they basically blew us off and sent us to the hospital,

where we ended up being reported to CPS for " general

neglect " (nevermind the fact that we have six children and Ariana is

the only one with weight issues and it is documented that her issues

have been medically followed since she was four months old!!!),

supposedly as a way to " help us " because of issues we were dealing

with and hitting brick walls with another child who has mental health

problems.

Anyway, later in the summer we finally had the MRI and got the

results, and sure enough, the Chiari showed up!! The NS said of

course it could be causing all of the dizziness and probably was, but

they couldn't be sure. I asked him if it could have contributed to

all of her feeding issues as an infant or even now, and he said it was

possible. Shortly after that, we had to change insurance, and we have

been at Kaiser Northern CA since January 07. She didn't get in to see

a NS with them until June 07, and of course he only had the original

MRI report, not the films to look at. Kaiser had done a new one, but

he didn't have the original to compare it to, in order to see if it

has progressed (grown?). So, he wanted us to come back this month

after seeing a couple of other providers to rule out other causes of

the dizziness. We saw an eye doctor again (same mild far-sightedness,

reading glasses only, and optional), audiologist and ENT (everything

normal), the GI doctors AGAIN (still nothing metabolic turns up there,

though I'm not convinced), and she had a barium swallow study. The NS

had said there is a particular swallow problem/pattern that can be

associated with Chiari, so I was really interested in those results.

I have a nursing background, and several of my kids have had multiple

swallow studies for reflux, so I am very familiar with the test. But

the radiologist literally had my daughter swallow THREE swallows of

the barium, standing, and said " everything is normal, we're done " .

Has anyone heard of this? I was shocked.

My daughter (Ariana) complains only of intermittent dizziness now and

also occasional headaches. If the Chiari were progressing, wouldn't

the dizziness be worse or at least the same as she initially presented

with?? But then she has what seem to be other signs of it

progressing. Like for the past month or two, she has complained

almost every morning of her arms being completely numb when she wakes

up in the morning. At first we thought she was just sleeping on them

funny, but not since it has persisted. It takes about an hour for

them to feel normal, apparently. A couple of times she has said it

happens during the day, but it is usually just upon awakening. She is

also complaining of a lot a neck pain, especially if she bends her

neck, which was not present before. I've also noticed around her

mouth turning bluish several times, though her skin has not had the

accompanying mottling.

I know this is long and a lot of details, but I'm trying to give a

complete picture in hopes that it might sound like someone else's

story. I've been leaving messages trying to schedule to follow-up

with the NS, and I assume she'll be returning to him within a month.

He is not aware of these latest symptoms (whether or not they are

related). I'd like to go in prepared with specific questions. I

don't remember the " number " they told me, as far as how far hers

protrudes, but from what I've read that doesn't even mean anything as

far as how individual patient experience symptoms.

Specifically, from the group, I am curious to know if you or your

children have experienced these symptoms and have found out they

relate to the Chiari or a similar condition (and yes, I will keep in

mind that you are not diagnosing anything ). Also, does anyone

happen to live in the Bay Area of California???

Chest pain (I read a recent post about someone pondering about this

because of chest pain with a broken neck, and it caught my attention);

my

daughter experiences intermittent bouts of stabbing chest/breast

pain (and she is far from " developing " there at 46 pounds), and they

ruled out

reflux)

Symptoms of ADHD that medication doesn't help (this is a long-shot,

but I thought I would throw it out there)

Insomnia and/or bouts of fatigue

" Failure to thrive " /finicky eating/weight gain issues without known

cause

Thanks so much!

Beth Fitzpatrick

" Here's to the crazy ones. The misfits. The rebels. The trouble-

makers. The round pegs in the square holes. The ones who see things

differently. They're not fond of rules, and they have no respect for

the status-quo. You can quote them, disagree with them, glorify or

vilify them. But the only thing you can't do is ignore them. Because

they change things. They push the human race forward. And while some

may see them as the crazy ones, we see genius. Because the people who

are crazy enough to think they can change the world are the ones who

do. " (Steve Jobs)

Beth Fitzpatrick

Hill, CA

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