Sensory issues returning-?'s/MAYO TRIP

[Guest guest]

Luke returned from camp with good news. He did have a wonderful

time but also some awkward moments and some strange occurences. He

said since that last migraine which caused the shooting pains and

tingling/prickles in his legs things had been flickering on and off

with his ability to feel pain and temperatures. We knew in the past

there were times he could feel temps and feelings but they would

always go away again. This time it seems to be permanent and he has

been experiencing some pretty strong feelings. I am wondering if it

is hpersensitivity now. He said the first several days while things

were coming back he was quite dizzy and having a lot of brain fog and

inability to do certain things. He also had extra sensitivity toward

the quiet. He would get very shaky and dizzy when it was silent. He

also felt what I call the " inner motor running " feelings. I have

experienced some of these things and know they are quite unsettling

and you feel out of control of your sense of security as you feel

vulnerable due to balance, dizzines, and all the sensory things you

are feeling. Next week he is seeing the neuro at Mayo and doing some

testing and I am hoping the neuro will be able to believe everything

we say as now they are gone. This does fall in line with I have

experienced as well as what we have seen in Asenath. Especially the

sensory prickles when feeling is returning through the nerves.

Asenath used to look at her arms and rub them and even Zipporrah has

smacked at her face and other places indicating strange feelings.

HAVE ANY OF YOU HAD THESE EXPERIENCES? ANY HELP ON THIS IS

APPRECIATED!

We will be at Mayo from July 29th through August 4th for many

doc appointments and testing. If anyone is going at that time let me

know and please pray for us. I have so many things swarming in my

brain to discuss about Asenath, Zipporrah, and Luke. I just want to

be thorough. I did type up a paper listing everything I need to

discuss so that should help some, but it is so easy to miss things.

Darla: mommy to Asenath, ZIpporrah, Luke, and the gang

[Guest guest]

Don't know how much help it is... but Sheldon seems to experience

some of these things. He can't talk so it's hard to tell but he goes

through periods where he seems scared by quiet and we leave a sound

machine or music on most of the time. It's kind of nice to hear of

such things from someone who can describe what they're experiencing

(not that I'm glad he's experiencing them but being afraid of quiet is

hard to imagine).

Sending best wishes to your family...

Stacey

Luke

returned from camp with good news. He did have a wonderful

time but also some awkward moments and some strange occurences.

He

said since that last migraine which caused the shooting pains and

tingling/prickles in his legs things had been flickering on and

off

with his ability to feel pain and temperatures. We knew in the

past

there were times he could feel temps and feelings but they would

always go away again. This time it seems to be permanent and he

has

been experiencing some pretty strong feelings. I am wondering if

it

is hpersensitivity now. He said the first several days while

things

were coming back he was quite dizzy and having a lot of brain fog

and

inability to do certain things. He also had extra sensitivity

toward

the quiet. He would get very shaky and dizzy when it was

silent. He

also felt what I call the " inner motor running " feelings.

I have

experienced some of these things and know they are quite

unsettling

and you feel out of control of your sense of security as you feel

vulnerable due to balance, dizzines, and all the sensory things

you

are feeling. Next week he is seeing the neuro at Mayo and doing

some

testing and I am hoping the neuro will be able to believe

everything

we say as now they are gone. This does fall in line with I

have

experienced as well as what we have seen in Asenath. Especially

the

sensory prickles when feeling is returning through the

nerves.

Asenath used to look at her arms and rub them and even Zipporrah

has

smacked at her face and other places indicating strange

feelings.

HAVE ANY OF YOU HAD THESE EXPERIENCES? ANY HELP ON THIS IS

APPRECIATED!

We will be at Mayo from July 29th through

August 4th for many

doc appointments and testing. If anyone is going at that time

let me

know and please pray for us. I have so many things swarming in

my

brain to discuss about Asenath, Zipporrah, and Luke. I just want

to

be thorough. I did type up a paper listing everything I need

to

discuss so that should help some, but it is so easy to miss

things.

Darla: mommy to Asenath, ZIpporrah, Luke, and the gang

Please contact mito-owner with any problems or

questions.

Yahoo!

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