Re: Is this common among mito patients?

[Guest guest]

Sounds autonomic. Mito related. Probably related to the flow or

pooling of blood. I always have cold feet and legs esp. at night...

Really cold.

Dawn

[Guest guest]

Sounds autonomic. Mito related. Probably related to the flow or

pooling of blood. I always have cold feet and legs esp. at night...

Really cold.

Dawn

[Guest guest]

Joni,

Billy has this blotchy legs/feet most of the time. The feet are cold

and purpleish. I can change the appearance of his feet by warm water

or by holding them (body heat). Wearing socks does not help.

Sometimes giving water will make the feet change back to " normal "

colors as if this can be agravated by dehydration. I worry that this

is a sign of poor circulation and that he is at risk of losing his

feet but the doctors don't seem to see it as that much of a problem.

His feet do not seem to be related to headaches but they are related

to the flushed face/red ears that others have mentioned.

Have you tried a hot water bottle or heating pad for his legs? I know

that adding quilts or blankets to Billy doesn't help as he is just

cold underneath. I thought about getting some of the socks with

heaters in them like the hunters have but just haven't tried it yet.

Twana

>

> Hi everyone,

> I am wondering if anyone has seen this before. We never know what

> is common to mito disorder or is " just Collin " . He has been

> complaining of cold legs below the knees at night in particular. He

> warms up in the tub, but when he gets out of the tub his legs below

> the knee are red with an odd rashy appearance, and feel hot, then

> subsides in an hour or so. He has had headaches coinciding with

> this occasionally as well. He is having cardiac testing at the

> beginning of December, if this is a common mito thing I would wait

> until then. This is not happening every day, so we're wondering if

> it is activity related. Thank you, Joni

[Guest guest]

Joni,

Billy has this blotchy legs/feet most of the time. The feet are cold

and purpleish. I can change the appearance of his feet by warm water

or by holding them (body heat). Wearing socks does not help.

Sometimes giving water will make the feet change back to " normal "

colors as if this can be agravated by dehydration. I worry that this

is a sign of poor circulation and that he is at risk of losing his

feet but the doctors don't seem to see it as that much of a problem.

His feet do not seem to be related to headaches but they are related

to the flushed face/red ears that others have mentioned.

Have you tried a hot water bottle or heating pad for his legs? I know

that adding quilts or blankets to Billy doesn't help as he is just

cold underneath. I thought about getting some of the socks with

heaters in them like the hunters have but just haven't tried it yet.

Twana

>

> Hi everyone,

> I am wondering if anyone has seen this before. We never know what

> is common to mito disorder or is " just Collin " . He has been

> complaining of cold legs below the knees at night in particular. He

> warms up in the tub, but when he gets out of the tub his legs below

> the knee are red with an odd rashy appearance, and feel hot, then

> subsides in an hour or so. He has had headaches coinciding with

> this occasionally as well. He is having cardiac testing at the

> beginning of December, if this is a common mito thing I would wait

> until then. This is not happening every day, so we're wondering if

> it is activity related. Thank you, Joni

[Guest guest]

My son is much younger and has a multitude of problems related to

his brain being so damaged from Leigh's. His temp is crazy. I am

always massaging his legs, feet and hands to get them warm and

sometimes pulling stuff off to cool him down. All caused by the

damage in his little head. I would have to agree with the others it

sound very mito.

I do have an idea that might help. When Eli was first born my mom

flooded the house with fleece. I thought it was nuts and we would

never use such warm blankets. Well at night when I am not there to

massage his little feet I wrap them in a fleece blanket and put a

regular one over top. FLEECE is like magic for Elijah. I check his

feet often throughout the night and normally they are tosty warm. I

am waiting for a freind to finish them but since Eli's feet are

always like Ice during the day she is making him Fleece socks. I

know it sounds nuts such a simple idea but it works at my house.

I hope you all find something that works specially with the cold

weather coming.

Ann

>

> Hi everyone,

> I am wondering if anyone has seen this before. We never know

what

> is common to mito disorder or is " just Collin " . He has been

> complaining of cold legs below the knees at night in particular.

He

> warms up in the tub, but when he gets out of the tub his legs

below

> the knee are red with an odd rashy appearance, and feel hot, then

> subsides in an hour or so. He has had headaches coinciding with

> this occasionally as well. He is having cardiac testing at the

> beginning of December, if this is a common mito thing I would wait

> until then. This is not happening every day, so we're wondering

if

> it is activity related. Thank you, Joni

[Guest guest]

My son is much younger and has a multitude of problems related to

his brain being so damaged from Leigh's. His temp is crazy. I am

always massaging his legs, feet and hands to get them warm and

sometimes pulling stuff off to cool him down. All caused by the

damage in his little head. I would have to agree with the others it

sound very mito.

I do have an idea that might help. When Eli was first born my mom

flooded the house with fleece. I thought it was nuts and we would

never use such warm blankets. Well at night when I am not there to

massage his little feet I wrap them in a fleece blanket and put a

regular one over top. FLEECE is like magic for Elijah. I check his

feet often throughout the night and normally they are tosty warm. I

am waiting for a freind to finish them but since Eli's feet are

always like Ice during the day she is making him Fleece socks. I

know it sounds nuts such a simple idea but it works at my house.

I hope you all find something that works specially with the cold

weather coming.

Ann

>

> Hi everyone,

> I am wondering if anyone has seen this before. We never know

what

> is common to mito disorder or is " just Collin " . He has been

> complaining of cold legs below the knees at night in particular.

He

> warms up in the tub, but when he gets out of the tub his legs

below

> the knee are red with an odd rashy appearance, and feel hot, then

> subsides in an hour or so. He has had headaches coinciding with

> this occasionally as well. He is having cardiac testing at the

> beginning of December, if this is a common mito thing I would wait

> until then. This is not happening every day, so we're wondering

if

> it is activity related. Thank you, Joni

[Guest guest]

Joni, My daughter Chelsea has this sx as well, especially after a seizure. Her hands and feet will be very cold. This is a common symptom in Rett Syndrome and is caused by dysfunction of the Autonomic Nervous System (ANS), the same as with mito. However, in mito, the underlying issue is usually brain damage and/or peripheral nerve damage, in Rett's it's caused by the brain systems being unable to mature past a certain point.

I have discussed this issue with her ped, who explained how circulation to the legs works. Oxygenated blood flows down the arteries via gravity, is used, and the unoxygenated blood is pumped up thru the veins, which have special muscles and valves. This is aided by weight bearing and walking. This function will be impaired with someone who does not walk/bear weight, has low muscle tone, neuropathy, and ANS dysfunction. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Joni, My daughter Chelsea has this sx as well, especially after a seizure. Her hands and feet will be very cold. This is a common symptom in Rett Syndrome and is caused by dysfunction of the Autonomic Nervous System (ANS), the same as with mito. However, in mito, the underlying issue is usually brain damage and/or peripheral nerve damage, in Rett's it's caused by the brain systems being unable to mature past a certain point.

I have discussed this issue with her ped, who explained how circulation to the legs works. Oxygenated blood flows down the arteries via gravity, is used, and the unoxygenated blood is pumped up thru the veins, which have special muscles and valves. This is aided by weight bearing and walking. This function will be impaired with someone who does not walk/bear weight, has low muscle tone, neuropathy, and ANS dysfunction. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Hi Twana,

I didn't think about dehydration, but Collin does dehydrate easily. Thanks for the help.

Jonibridgmanco wrote:

Joni,Billy has this blotchy legs/feet most of the time. The feet are coldand purpleish. I can change the appearance of his feet by warm wateror by holding them (body heat). Wearing socks does not help. Sometimes giving water will make the feet change back to "normal"colors as if this can be agravated by dehydration. I worry that thisis a sign of poor circulation and that he is at risk of losing hisfeet but the doctors don't seem to see it as that much of a problem.His feet do not seem to be related to headaches but they are relatedto the flushed face/red ears that others have mentioned. Have you tried a hot water bottle or heating pad for his legs? I knowthat adding quilts or blankets to Billy doesn't help as he is justcold underneath. I thought about getting some of the socks

withheaters in them like the hunters have but just haven't tried it yet. Twana > > Hi everyone,> I am wondering if anyone has seen this before. We never know what > is common to mito disorder or is "just Collin". He has been > complaining of cold legs below the knees at night in particular. He > warms up in the tub, but when he gets out of the tub his legs below > the knee are red with an odd rashy appearance, and feel hot, then > subsides in an hour or so. He has had headaches coinciding with > this occasionally as well. He is having cardiac testing at the > beginning of December, if this is a common mito thing I would wait > until then. This is not happening every day, so we're wondering if > it is activity related. Thank you,

JoniPlease contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hi Twana,

I didn't think about dehydration, but Collin does dehydrate easily. Thanks for the help.

Jonibridgmanco wrote:

Joni,Billy has this blotchy legs/feet most of the time. The feet are coldand purpleish. I can change the appearance of his feet by warm wateror by holding them (body heat). Wearing socks does not help. Sometimes giving water will make the feet change back to "normal"colors as if this can be agravated by dehydration. I worry that thisis a sign of poor circulation and that he is at risk of losing hisfeet but the doctors don't seem to see it as that much of a problem.His feet do not seem to be related to headaches but they are relatedto the flushed face/red ears that others have mentioned. Have you tried a hot water bottle or heating pad for his legs? I knowthat adding quilts or blankets to Billy doesn't help as he is justcold underneath. I thought about getting some of the socks

withheaters in them like the hunters have but just haven't tried it yet. Twana > > Hi everyone,> I am wondering if anyone has seen this before. We never know what > is common to mito disorder or is "just Collin". He has been > complaining of cold legs below the knees at night in particular. He > warms up in the tub, but when he gets out of the tub his legs below > the knee are red with an odd rashy appearance, and feel hot, then > subsides in an hour or so. He has had headaches coinciding with > this occasionally as well. He is having cardiac testing at the > beginning of December, if this is a common mito thing I would wait > until then. This is not happening every day, so we're wondering if > it is activity related. Thank you,

JoniPlease contact mito-owner with any problems or questions. __________________________________________________