Re: What do you make of this?

[Guest guest]

goodness Deb. I think he definately needs to see a doc. soon but I'm not sure exactly what kind of doc. to reccomend. I would hate for you to have to take him to the ER as I know our ER here is so chaotic and the added germs there too. Such a tough situation! It sounds as if he has alot of issues going on at once. I wish there was some omniscient physician you could just call up and get some advice from. You'll be in prayers. If things get worse or you just get that "feeling" then definately go on and take to the ER. Hope things improve very soon!

[Guest guest]

I'd go straight to the ER as well. That rash sounds like an infection of some kind?

Good luck, keep us posted.

Seta

[Guest guest]

has those painfull raised white patches, we were told " autonomic, causing the blood vessels to go into spasm" and sometimes we need to ignore the cause and treat the symptoms...............

how did they treat it?

My friend Mayn and I (she has a mito kid too) were reminded that Mattie Stepanek who has dysautonomia and mito has almost died several times from skin problems...but I never heard anyone else talk about anything like that...please tell me anything more you know...are there common places for it? Like places where more pressure is put on the body or what? Who has treated s before? the neuro, metabolic or pedi?

deb

[Guest guest]

Hey Deb,

started doing strange things like this a year ago. She at times was severly altered. You would question her about something you knew that was so true but she was determined she was right. She was seeing alot of things that were not there and was terrified because of it especially at night. She could not be in a room by herself day or night.

used to walk right into the glass door and door facings like she did not see them.

has always dragged her left foot, but as it was much worse during these times. Sometimes she had not use of her left side, like a stroke. It would come back but each time she was weaker. Sometimes these spells would last hours and one time it lasted three days before the regained the use of the left side.

has a place on her lower back over to the left that sometimes swells and tirns blue, it is very hot to the touch and she cant stand for it to be touched

Cant get anyone to tell me what this is.

When gets like this she just seems wiped out and has black circles under and around her eyes, she is also very nasty to others.

She eats less and drinks alot more.

It is scary when she gets like this but it does seem to pass but the last episodes like this have seemed to hang on for days before we see an inpprovement.

I hope is better soon.

What do you make of this?

Hi there folks...My husband and I both had realized that didn't seem to be doing well the past few days and so I decided to write down everything we had noticed...here is what we came up with...now, what would you do and who to call?1. Mentally altered...saying a lot of wierd stuff that deons't make any sense but he believes to be true...has also seen some stuff that wasn't there2. Yesterday he was following my husband into his bedroom and walked right into the Fridge...like smack in the middle of it (he was looking straight ahead and we havne't moved it)3. Since yesterday is sorta dragging-limping and turning in his left foot...he has been noted to have left sided weakness but never affected his gait before.4. He has this growing circle of odd looking skin on his hip...I put lotion on it a couple days ago and he cried and said it burned so I just left it alone thinking it was just dry skin...today it has grown tremendously and it like the size of my hand (fingers included) so I decided to try Vaseline...remember he is black, so it is white looking before I put the V on...then it is red and hot hot hot...he has a much much smaller one on the other side...5. He has a wet cough and barely dripping nose (at times) 6. Possibly a fever (dysautonomia makign this one hard to determine)7. Fatigue...not sleeping more but not as active while awake and looks pretty tired8. Very Aggitated and quick to anger (however a friend was just reminding me we had to take him off his Resperdal b/c of his heart problem...he has been on it for three years so this is likely the cause here)9. Loss of Apetite...he isn't eating nearly as much but still eating10. Thirsty...he says and has been sneaking drinks (he uses a gtube just for liquids and has never asked for a drink until this week)11. Slower tube feeds...having a harder time getting as much down and also just very slow at the time12. He has been bleeding from the site and possibly the tract (talked to GI doc friday night and am going to see the ostomy nurse monday)13. Oil and blood in the tube...the oil is like orange and looks just like CoQ would only he isn't taking it...then blood in the tube at times too.sooooo...a lot going on in a short time but don't wanna have to calla bunch of specialists or go a lot of places...are my best chances to go the ER tonight?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Don't really know what to tell you but I would sure think needs

to see a doctor. I think I would probably suggest a neuro. If he gets

worse before you can get a hold of his neuro then by all means there is

always the ER. Let your gut feelings be your guide. My prayers are with

you.

God be with you,

Kathy, grandma to Audrey,17mos

[Guest guest]

Deb,

Don't really know what to tell you but I would sure think needs

to see a doctor. I think I would probably suggest a neuro. If he gets

worse before you can get a hold of his neuro then by all means there is

always the ER. Let your gut feelings be your guide. My prayers are with

you.

God be with you,

Kathy, grandma to Audrey,17mos

[Guest guest]

Deb,

Don't really know what to tell you but I would sure think needs

to see a doctor. I think I would probably suggest a neuro. If he gets

worse before you can get a hold of his neuro then by all means there is

always the ER. Let your gut feelings be your guide. My prayers are with

you.

God be with you,

Kathy, grandma to Audrey,17mos

[Guest guest]

If anyone has any further thoughts I am open to anything...

however, I did talk to Dr Korson tonight (a couple times) and our neurologist and they will be ordering an MRI tomorrow...which probably means we wont have it right away since has to be admitted for these things...I will also be requesting an EEG but that might be a different time...we are also going to put him back on the Risperdal to see if that helps...

Dr Korson was worried about the mental status change, the dragging foot, and the like with a stroke...then worried about the hotspot which he said is likely autonomic and then he said the others were likely a result of the stroke or some oncoming infection and just had to waited out.

Even if allt he things are true...there is nothign that can really be done...which is so frustrating...Dr Korson said this shows the disease is progressing ( not that it has ever NOT, but on paper) and this could be a new baseline for him...but again, only time will tell...

thanks to all your Dr Moms...ologists, ologists and then like...

Deb, ologist

[Guest guest]

Hi Deb.

It sounds as though there is something significantly wrong, don't forget to trust "your gut instincts",

I would be worried about stroke of course, but it really does sound like a lot of autonomic issues, has those painfull raised white patches, we were told " autonomic, causing the blood vessels to go into spasm" and sometimes we need to ignore the cause and treat the symptoms...............

Good Luck, take care, Jillian, s mom

What do you make of this?

Hi there folks...My husband and I both had realized that didn't seem to be doing well the past few days and so I decided to write down everything we had noticed...here is what we came up with...now, what would you do and who to call?1. Mentally altered...saying a lot of wierd stuff that deons't make any sense but he believes to be true...has also seen some stuff that wasn't there2. Yesterday he was following my husband into his bedroom and walked right into the Fridge...like smack in the middle of it (he was looking straight ahead and we havne't moved it)3. Since yesterday is sorta dragging-limping and turning in his left foot...he has been noted to have left sided weakness but never affected his gait before.4. He has this growing circle of odd looking skin on his hip...I put lotion on it a couple days ago and he cried and said it burned so I just left it alone thinking it was just dry skin...today it has grown tremendously and it like the size of my hand (fingers included) so I decided to try Vaseline...remember he is black, so it is white looking before I put the V on...then it is red and hot hot hot...he has a much much smaller one on the other side...5. He has a wet cough and barely dripping nose (at times) 6. Possibly a fever (dysautonomia makign this one hard to determine)7. Fatigue...not sleeping more but not as active while awake and looks pretty tired8. Very Aggitated and quick to anger (however a friend was just reminding me we had to take him off his Resperdal b/c of his heart problem...he has been on it for three years so this is likely the cause here)9. Loss of Apetite...he isn't eating nearly as much but still eating10. Thirsty...he says and has been sneaking drinks (he uses a gtube just for liquids and has never asked for a drink until this week)11. Slower tube feeds...having a harder time getting as much down and also just very slow at the time12. He has been bleeding from the site and possibly the tract (talked to GI doc friday night and am going to see the ostomy nurse monday)13. Oil and blood in the tube...the oil is like orange and looks just like CoQ would only he isn't taking it...then blood in the tube at times too.sooooo...a lot going on in a short time but don't wanna have to calla bunch of specialists or go a lot of places...are my best chances to go the ER tonight?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Deb,

No one has ever "treated "them, in fact the first time we went to Childrens hosp. they called everyone in and no one had ever seen anything like it before, it was a large patch ( with jagged edges) on his chest, they questioned blood clot, but quickly ruled it out as it was a "patch" ( it went away after prob. 18hrs.)

2nd. patch was his entire upper arm, swollen and white, it happened after i dropped him off @ school, he said it felt like he had a broken arm, but he hadn't hit it, he was in agony and couldn't raise his arm to pick up a pen, but when i picked him up from school @ 3.30 it was much faded and only sore

3rd. time was his wrist, a painful raised white band around his arm, ( about 3 inches wide) which lasted about 12 hrs ? we saw our old pead. who saw it and identified it immediately as "autonomic". "blood vessels in spasm.

Now s recent developments, hands and wrists swollen and white, biochemical and our new pead. say its autonomic, blood vessels in spasm......( his hands / wrists stay white for days) The one thing that the Drs. discovered last week is slow capilary refill, ( gently press the skin, it should turn white and return to normal colour in 2 to 3 seconds) s "patches" do not change colour when pressed, which the Dr. say confirm that the blood vessels are in spasm....

Hope this helps a little, good luck Jillian s mom

Re: What do you make of this?

has those painfull raised white patches, we were told " autonomic, causing the blood vessels to go into spasm" and sometimes we need to ignore the cause and treat the symptoms...............how did they treat it?My friend Mayn and I (she has a mito kid too) were reminded that Mattie Stepanek who has dysautonomia and mito has almost died several times from skin problems...but I never heard anyone else talk about anything like that...please tell me anything more you know...are there common places for it? Like places where more pressure is put on the body or what? Who has treated s before? the neuro, metabolic or pedi?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

No advise just good thoughts and prayers. I got sad when Korson said it shows the disease is progressing. I am sure you are right and there is nothing you can really do. Enjoy and I hope he has more better days than bad ones.

Love and hugs,

-----Original Message-----From: VisibleWorship@... Sent: Sunday, January 26, 2003 10:09 PMTo: Mito Subject: Re: What do you make of this?If anyone has any further thoughts I am open to anything...however, I did talk to Dr Korson tonight (a couple times) and our neurologist and they will be ordering an MRI tomorrow...which probably means we wont have it right away since has to be admitted for these things...I will also be requesting an EEG but that might be a different time...we are also going to put him back on the Risperdal to see if that helps...Dr Korson was worried about the mental status change, the dragging foot, and the like with a stroke...then worried about the hotspot which he said is likely autonomic and then he said the others were likely a result of the stroke or some oncoming infection and just had to waited out. Even if allt he things are true...there is nothign that can really be done...which is so frustrating...Dr Korson said this shows the disease is progressing ( not that it has ever NOT, but on paper) and this could be a new baseline for him...but again, only time will tell...thanks to all your Dr Moms...ologists, ologists and then like...Deb, ologist Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

I would be worried about the blood if it is IN the tube,especially since you say your having a harder time getting as much or slower feeds. The other things could be a change in meds.

Take care and still praying for you ( and us ) all.

, Mom to

What do you make of this?

Hi there folks...My husband and I both had realized that didn't seem to be doing well the past few days and so I decided to write down everything we had noticed...here is what we came up with...now, what would you do and who to call?1. Mentally altered...saying a lot of wierd stuff that deons't make any sense but he believes to be true...has also seen some stuff that wasn't there2. Yesterday he was following my husband into his bedroom and walked right into the Fridge...like smack in the middle of it (he was looking straight ahead and we havne't moved it)3. Since yesterday is sorta dragging-limping and turning in his left foot...he has been noted to have left sided weakness but never affected his gait before.4. He has this growing circle of odd looking skin on his hip...I put lotion on it a couple days ago and he cried and said it burned so I just left it alone thinking it was just dry skin...today it has grown tremendously and it like the size of my hand (fingers included) so I decided to try Vaseline...remember he is black, so it is white looking before I put the V on...then it is red and hot hot hot...he has a much much smaller one on the other side...5. He has a wet cough and barely dripping nose (at times) 6. Possibly a fever (dysautonomia makign this one hard to determine)7. Fatigue...not sleeping more but not as active while awake and looks pretty tired8. Very Aggitated and quick to anger (however a friend was just reminding me we had to take him off his Resperdal b/c of his heart problem...he has been on it for three years so this is likely the cause here)9. Loss of Apetite...he isn't eating nearly as much but still eating10. Thirsty...he says and has been sneaking drinks (he uses a gtube just for liquids and has never asked for a drink until this week)11. Slower tube feeds...having a harder time getting as much down and also just very slow at the time12. He has been bleeding from the site and possibly the tract (talked to GI doc friday night and am going to see the ostomy nurse monday)13. Oil and blood in the tube...the oil is like orange and looks just like CoQ would only he isn't taking it...then blood in the tube at times too.sooooo...a lot going on in a short time but don't wanna have to calla bunch of specialists or go a lot of places...are my best chances to go the ER tonight?deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Since I am relatively new to the group (new again I guess you'd say) and not

a medically trained person I'll preface my thoughts with I may be wrong, BUT

I agree with .

I would myself definitely get your son to the ER now if you haven't already

taken him into his regular Dr.

I believe that coming off the Resperdal could cause the thinking odd and

walking into things, but the rash and the blood are causes for alarm in my

opinion.

Let us all know how is and what you find out.

Scoggins

What do you make of this?

>>Date: Sun, 26 Jan 2003 17:33:38 EST

>>

>>Hi there folks...

>>

>>My husband and I both had realized that didn't seem to be doing

well

>>the past few days and so I decided to write down everything we had

>>noticed...here is what we came up with...now, what would you do and who to

>>call?

>>

>>1. Mentally altered...saying a lot of wierd stuff that deons't make any

>>sense but he believes to be true...has also seen some stuff that wasn't

>>there

>>

>>2. Yesterday he was following my husband into his bedroom and walked

right

>>into the Fridge...like smack in the middle of it (he was looking straight

>>ahead and we havne't moved it)

>>

>>3. Since yesterday is sorta dragging-limping and turning in his left

>>foot...he has been noted to have left sided weakness but never affected

his

>>gait before.

>>

>>4. He has this growing circle of odd looking skin on his hip...I put

>>lotion

>>on it a couple days ago and he cried and said it burned so I just left it

>>alone thinking it was just dry skin...today it has grown tremendously and

>>it

>>like the size of my hand (fingers included) so I decided to try

>>Vaseline...remember he is black, so it is white looking before I put the V

>>on...then it is red and hot hot hot...he has a much much smaller one on

the

>>other side...

>>

>>5. He has a wet cough and barely dripping nose (at times)

>>

>>6. Possibly a fever (dysautonomia makign this one hard to determine)

>>

>>7. Fatigue...not sleeping more but not as active while awake and looks

>>pretty tired

>>

>>8. Very Aggitated and quick to anger (however a friend was just reminding

>>me

>>we had to take him off his Resperdal b/c of his heart problem...he has

been

>>on it for three years so this is likely the cause here)

>>

>>9. Loss of Apetite...he isn't eating nearly as much but still eating

>>

>>10. Thirsty...he says and has been sneaking drinks (he uses a gtube just

>>for

>>liquids and has never asked for a drink until this week)

>>

>>11. Slower tube feeds...having a harder time getting as much down and

also

>>just very slow at the time

>>

>>12. He has been bleeding from the site and possibly the tract (talked to

>>GI

>>doc friday night and am going to see the ostomy nurse monday)

>>

>>13. Oil and blood in the tube...the oil is like orange and looks just

like

>>CoQ would only he isn't taking it...then blood in the tube at times too.

>>

>>sooooo...a lot going on in a short time but don't wanna have to calla

bunch

>>of specialists or go a lot of places...are my best chances to go the ER

>>tonight?

>>

>>deb

>

>

>_________________________________________________________________

>STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

>http://join.msn.com/?page=features/junkmail

>

>

>Please contact mito-owner with any problems or questions.

>

>