Re: Lactic acid, blueness around mouth, muscle atrophy, SLEEPLESS for...

September 23, 1999

Just a quick comment on the sleeplessness issue...Orion also had high lactic

acid, and he would kind of go through phases...Usually he just wanted to

sleep most of the time. I could wake him up, but he would make known his

anger at me! He would be awake for a little while here and there, but mostly

slept all the time.

Once in a while, though, he would go through a period of a couple of

days where he would not sleep for ANYTHING; he would just scream for hours

(11 hrs one time-- we ended up at the ER). Finally, his dr gave me a RX for

chloralhydrate for him for when he would have these periods.

Orion's Mommy

September 23, 1999

Just a quick comment on the sleeplessness issue...Orion also had high lactic

acid, and he would kind of go through phases...Usually he just wanted to

sleep most of the time. I could wake him up, but he would make known his

anger at me! He would be awake for a little while here and there, but mostly

slept all the time.

Once in a while, though, he would go through a period of a couple of

days where he would not sleep for ANYTHING; he would just scream for hours

(11 hrs one time-- we ended up at the ER). Finally, his dr gave me a RX for

chloralhydrate for him for when he would have these periods.

Orion's Mommy

September 23, 1999

Just a quick comment on the sleeplessness issue...Orion also had high lactic

acid, and he would kind of go through phases...Usually he just wanted to

sleep most of the time. I could wake him up, but he would make known his

anger at me! He would be awake for a little while here and there, but mostly

slept all the time.

Once in a while, though, he would go through a period of a couple of

days where he would not sleep for ANYTHING; he would just scream for hours

(11 hrs one time-- we ended up at the ER). Finally, his dr gave me a RX for

chloralhydrate for him for when he would have these periods.

Orion's Mommy

September 24, 1999

-

Thanks for your response, could you tell me the meds that help sleep for mito

kids? Thanks. Michele

September 24, 1999

-

Thanks for your response, could you tell me the meds that help sleep for mito

kids? Thanks. Michele

September 24, 1999

,

This sounds a little like Lexi. She is usually very lethargic (still sleeps

18 hours a day), but goes through these phases when she will NOT sleep!!

I've been attributing it to her sensory intergration problems, but this has

gotten my little pea brain to thinking......hmmm, could this be yet another

mito symptom?

ruth

September 24, 1999

,

This sounds a little like Lexi. She is usually very lethargic (still sleeps

18 hours a day), but goes through these phases when she will NOT sleep!!

I've been attributing it to her sensory intergration problems, but this has

gotten my little pea brain to thinking......hmmm, could this be yet another

mito symptom?

ruth

September 24, 1999

,

This sounds a little like Lexi. She is usually very lethargic (still sleeps

18 hours a day), but goes through these phases when she will NOT sleep!!

I've been attributing it to her sensory intergration problems, but this has

gotten my little pea brain to thinking......hmmm, could this be yet another

mito symptom?

ruth

September 24, 1999

Hi Michele,

Orion took Chloral Hydrate to help him sleep. It is a very mild

sedative, which basically just made him sleepy enough to go to sleep-- It did

NOT " knock him out " , which I liked-- I was able to wake him up if I needed to.

Orion's Mommy

September 24, 1999

In a message dated 09/23/1999 9:50:17 PM Pacific Daylight Time,

Hilandgang@... writes:

<< ,

This sounds a little like Lexi. She is usually very lethargic (still sleeps

18 hours a day), but goes through these phases when she will NOT sleep!!

I've been attributing it to her sensory intergration problems, but this has

gotten my little pea brain to thinking......hmmm, could this be yet another

mito symptom?

ruth >>

Ruth;

What the drs told me about Orion's sleeping pattern (if you would call

it that) is that he would want to sleep all the time because of his brain

atrophy; they said that because his brain was " in distress " , his body would

react by making him want to sleep so much. They also told me that some heart

conditions are like this; when there is a serious problem with the heart, the

body will become very tired. Orion's heart was fine, except for a slight

murmur.

No one was ever able to explain these periods where he would not sleep

(he would just scream and scream), although I do have my own opinions... I

believe that because of the fluid build-up around his brain, there was a lot

of pressure (although not enough pressure to require neurosurgery-- it was

closely monitored), and the pressure would sometimes be too much for him, and

cause him a lot of pain. I believe he had a lot of nausea, too, during these

periods, because I noticed that if I laid him down on his back and rubbed his

tummy for a little while, sometimes he would calm down. Laying him on his

tummy and rubbing his back helped sometimes, too. I didn't like to give him

the sedative unless I absolutely had to...

Orion's Mommy

September 26, 1999

Hi ;

Orion wasn't really a sleepy baby from the start; I think his sleeping

habits were pretty much " nomal " for an infant (as normal as can be for an

infant, anyway). He would be awake for a few hours, sleep for a few hrs,

etc... He was a very hungry baby, too.

He didn't start sleeping all the time until he started showing signs of

his illness; it was very sudden... During his first stay at the hospital.

That was when he was unconscious for about 9 days; he was also intubated...

They didn't think he would make it. Then, all of a sudden, he started

breathing on his own, and then woke up... He did have a few days there in

the hospital where he wouldn't sleep; the nurses even commented on it... one

nurse even decided to just let him scream in his room, and close the door--

she thought I was upstairs in my parent room asleep... must have been

mother's intuition-- at four in the morning, I just HAD to go check on him--

when I got off the elevator, I could hear him screaming all the way down the

hall... I had a FIT-- I could understand if she was with another patient, but

she was just sitting at the nurses' station, eating. Anyway, after his first

hospital stay, his sleeping patterns seemed to smooth out a little bit; he

would sleep for a long time, but also be awake for awhile, too... His real

" sleepiness " started Christmas Eve, he was very lethargic, no fever,

vomited-- I thought he had a stomach virus, and took him to the ER. His

hemoglobin count was down, they did a CT scan, and discovered the brain

atrophy and hemorrhaging... Another few days of being unconscious, dx with

Leigh's, told there was nothing they could do (you guys know the story)...

This is when the real " unusual " sleeping patterns started... And when they

told me that it was because of his brain atrophy. He did have high lactid

acid levels, though. They never specifically said this was the cause of his

sleepiness; they just said it was because of the brain atrophy.

Sorry to have rambled so much... I tend to go on and on when it comes

to Orion. Oh, and if anyone is interested, I am working on a web page for

him-- the address is http://www.angelfire.com/ri/orion1/

Orion's Mommy

<a href= " http://www.angelfire.com/ri/orion1/ " >Orion's Page</a>

In a message dated 99-09-26 11:47:19 EDT, you write:

<< , Thanks so much for all your input into these lists. Your strength

is amazing and you are providing others with valuable information., I was

just reading the posting on Orion's sleeping habits. Was he a sleepy baby

right from the start.? Did they attribute this to the high lactic acid? My

newest addition is a sleeper and with Matty's dx I am so worried. She is

just a month old and does have periods of calm wakefulness. I am driving

myself crazy thinking there is something wrong. I know that I am probably

just reading into everything..

thanks, >>

September 26, 1999