child w/Chiari and anger, anxiety, help please.

[Guest guest]

Hello everyone,

Sorry to post again. I have some questions since Lexie

was decompressed 25 days ago, but we still see some

headaches. Some days she does not complain very much,

then others she has a few (3-5) during the day. When

she gets angry or anxious, she seems to get a headache

(is this common w/ACM?), especially if she is tired. I

do not know if it will go away after the swelling is

down. She tries to dance and move too much. It is hard

to hold a five-year-old down and I have explained the

healing process, but when she is feeling good, she

will not sit still.

Have any of you used any relaxation techniques or

alternative healing therapies to help you deal with

the pain and anxiety? There is a new alternative pain

clinic at our children's hospital I am considering.

When you get upset, is the pain worse or does it come

on when you get upset? How do other parents of

children with chiari

manage their chils's pain and child's anxiety? She is

not a good reporter of pain, then she explodes (worse

if I am not there b/c I can read her moods and calm

her).

She has mood swings where she flips (does not always

have a headache) and is angry all of a sudden, maybe

throwing things or hitting (she has broken at least

6-7 pairs of glasses this year alone, spanking does

not deter her). It has improved since the surgery but

I am concerned, very concerned. And I feel like there

is no help out there for us. I am really consistent

with making sure she receives a consequence for bad

behavior but I thought if I tackled the anxiety maybe

her behavior would be better. Keep in mind, this child

has suffered from chronic severe pain due to a shunt

that was malfunctioning intermittently.

I hoped the surgery would cure all, not so lucky, back

to work I guess. Any input is greatly appreciated.

Thanks to all,

__________________________________________________

[Guest guest]

smitty minnesota <smittymn@... said:

>Sorry to post again. I have some questions since Lexie

was decompressed 25 days ago, but we still see some

headaches. >>>>>

Recovery from decompression surgery often takes 3-8 months or more.

It's very common for there to be symptoms like headaches just 3-4

weeks post-op.

If you suspect there is infection or a dural leak, consult your

surgeon about what steps to take.

Chip

5+ years post-op and doing great !

http://www.pressenter.com/~chip/chiari.htm

[Guest guest]

Sudden onset rages and behaviourial changes are a reported symptom of

Chiari, along with other conditions that involve the cerebellum and

brainstem.

I have experienced it as a symptom before surgery and as a consequence of

the healing process as well. It disapated after a period of three or so

months. It is starting to return as she becomes more compressed.

I manage this symptom very carefully, because I believe it is a part of her

Chiari and as it get worse no behaviourial modification even touches it.

Who know if it is a response to pain or a disruption of the delicate wiring

that exists in our children heads. Frontal loble is usually the culprit

in behaviourial problems but after months of reading I believe it is based

from the cerebellum. There are many explorations and theories occuring in

this area and the lower portion of the vermis is frequently discussed.

My daughters vermis is actually displaced as well as her tonsils.

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