Dysautonomia

[Guest guest]

Dear Ginger,

I read your post with interest. My daughter suffers from dysautonomia and

has for a number of years. At age 4 she was diagnosed with CFS (Chronic

Fatigue Syndrome) and by age 8 fit the criteria for POTS (postural

orthostatic tachycardia syndrome). The POTS was a huge issue from age 9-12,

until we got a dx of a suspected mito disorder. Since Dr. Cohen put her on

his cocktail, she is amazingly improved in all ways except her energy and

fatigue levels.

My question to you is this. My daughter had a positive Sweat test a couple

of years ago, which stumped our doctor ( a reknowned specialist in CFS/POTS)

He has had a couple of his patients test positive on the sweat test that

have no symptoms of Cystic Fibrosis. Just wondering if you had any feelings

on this.

Thanks for sharing your feelings. I found it validating and informative to

see it all in one place like that!!

Fondly,

Z

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit us at www.pediatricnetwork.org for Chronic Fatigue Syndrome,

Fibromyalgia, and Orthostatic Intolerance and dysautonomia and Join us in

our Active Forums for information and support when living with these

conditions

[Guest guest]

Dear Z.,

I believe the proper spelling is " acetycholine " . Sorry I got carried

away with my " amines " . Thanks-

Ginger

[Guest guest]

Need to know peoples experiences with autonomic dysfunction in kids

with mito? I'd like to know how they exhibit symptoms and if the

come and go or are there all the time.

Thanks

[Guest guest]

>Need to know peoples experiences with autonomic dysfunction in kids

>with mito? I'd like to know how they exhibit symptoms and if the

>come and go or are there all the time.

One of Emilie's big autonomic things is color change--warm, red arms,

hands, legs, or feet...cold, purple arms, hands, legs, or feet. Any

combination of these (like one hand red and hot while the other is cold

and purple). She sometimes gets very pale in the face or gets red

cheeks. Now and then, one or both knees turn red and extremely warm.

Other things: tachycardia, low-grade fevers, dilated pupils, and sweaty

palms.

All these symptoms come and go in Emilie. They tend to be streaky;

she'll have red cheeks every day for months, then not again for months,

then it starts up again. For a while, her hands turned purple after

eating, but we haven't seen that in years. I think the autonomic

symptoms cluster when Emilie's mito is more active (we'll notice at the

same time that she's very tired, sleepy, and irritabile)...though she can

have the autonomic stuff on days when she actually

[Guest guest]

has recently been diagnosed with dysautonomia. She seems to

exhibit more symptoms when she is in a crisis situation. She has very

weird temps. (100.4 one hour and then while sleeping 1 hr. later

97.6, then 95.4 in the middle of the night). Her pulses are extreme

(58-188). Blood pressure too. She has night sweats when she is sick

too. Her bowels are VERY slow, so we treat that with miralx and

reglan. They say not to worry about it and that it is not harmful. I

will never understand how a temp of 93.2 is not harmful to ones body.

It is important to monitor temps. when they are sick. Some children

are not able to have high temps. ,so Cohen told me that if is

acting like she is sick and is running only a 99.0 temp, to treat it

like a fever. Now the problem is getting everyone else to understand

this.What is a sign of infection?Fever. If she not running a fever

then she must not be sick...It's really hard to get Residents and

interns in the hospital to get this notion.It is not what they were

taught. I sometimes feel like I am beating my head against a wall,

and might as well be.Dysautonomia can affect all differnet parts of

the body:bowels, bladder, vital signs, in some bone marrow etc.I hope

others can help you with this too, I figured out she had this 2

months ago with the help of those on this site, then her doc says, oh

yeah, this is common for mito kids. Shouldn't they tell us this

before we figure it out???

Dawn

[Guest guest]

has recently been diagnosed with dysautonomia. She seems to

exhibit more symptoms when she is in a crisis situation. She has very

weird temps. (100.4 one hour and then while sleeping 1 hr. later

97.6, then 95.4 in the middle of the night). Her pulses are extreme

(58-188). Blood pressure too. She has night sweats when she is sick

too. Her bowels are VERY slow, so we treat that with miralx and

reglan. They say not to worry about it and that it is not harmful. I

will never understand how a temp of 93.2 is not harmful to ones body.

It is important to monitor temps. when they are sick. Some children

are not able to have high temps. ,so Cohen told me that if is

acting like she is sick and is running only a 99.0 temp, to treat it

like a fever. Now the problem is getting everyone else to understand

this.What is a sign of infection?Fever. If she not running a fever

then she must not be sick...It's really hard to get Residents and

interns in the hospital to get this notion.It is not what they were

taught. I sometimes feel like I am beating my head against a wall,

and might as well be.Dysautonomia can affect all differnet parts of

the body:bowels, bladder, vital signs, in some bone marrow etc.I hope

others can help you with this too, I figured out she had this 2

months ago with the help of those on this site, then her doc says, oh

yeah, this is common for mito kids. Shouldn't they tell us this

before we figure it out???

Dawn

[Guest guest]

>I think the autonomic

>symptoms cluster when Emilie's mito is more active (we'll notice at the

>same time that she's very tired, sleepy, and irritabile)...though she can

>have the autonomic stuff on days when she actually

Oops, that should read that Emilie can also have autonomic symptoms on

days when she actually feels pretty good. Not sure how I managed to cut

the end off.

And I meant " irritable " , not " irritabile " !

-- Mom to:

Emilie (16), mito--complex IV, cp, ld

Kaitlin (16), cp, asthma, a few autonomic symptoms

Ian (21) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Hello,

I am an adult with dx KSS, but the symptoms seem to be very similiar. I notice that my symptoms seem to go in cycles every few months-glad to see someone else sees a similar pattern. I don't see the mito doc for a while, but I think I will be dx with dysautonomia myself.

I know that doesn't help, but 's testimony helped me.

I hope things get better.

God bless,

Hazelpone

Re: Dysautonomia

>Need to know peoples experiences with autonomic dysfunction in kids >with mito? I'd like to know how they exhibit symptoms and if the >come and go or are there all the time.One of Emilie's big autonomic things is color change--warm, red arms, hands, legs, or feet...cold, purple arms, hands, legs, or feet. Any combination of these (like one hand red and hot while the other is cold and purple). She sometimes gets very pale in the face or gets red cheeks. Now and then, one or both knees turn red and extremely warm. Other things: tachycardia, low-grade fevers, dilated pupils, and sweaty palms.All these symptoms come and go in Emilie. They tend to be streaky; she'll have red cheeks every day for months, then not again for months, then it starts up again. For a while, her hands turned purple after eating, but we haven't seen that in years. I think the autonomic symptoms cluster when Emilie's mito is more active (we'll notice at the same time that she's very tired, sleepy, and irritabile)...though she can have the autonomic stuff on days when she actuallyPlease contact mito-owner with any problems or questions.