RE: Set backs after sedation?/ ADDERALL warning

[Guest guest]

I can only offer my expeience to you.

Samya, my older daughter, who is now dead, Had setbacks after an MRI sedation.

First of all, let me tell you that we had no diagnosis at the time. WE had

never ever heard the word mito

disease. She was sedated in the hopes that an MRI would help the diagnosis. I

will never ever forget that day. She came out seeming ver “drunk”,

vomited 15 times that day, had slurred speech and could not walk one step

without falling over. We were released and told she might be a little sick for

until all the medicine wore out. What happened to her was severe and lasted

more than 24 hrs. In fact, for 2 nights we put her to sleep on the floor on her

mattress in our room for fear she would wake up at night and fall down the

stairs. She was 7 and a half years old at the time. I am not sure what the

medicin was (I think Nebutol). After that she slowly recovered into functional,

but she started having severe speech stuttering, and all her skills were worse

from cognitive to mental status to motor. At the time, we had not put the slow

deterioration to the sedation. She died about a year after that MRI. The MRI,

ironically, came back normal and gave us no diagnosis, and yet the sedation

helped destroy her. Looking back now, and knowing she had mito . I have no doubt that MRI spiraled her

downfall. A year later, she got a virus and deteriorated quickly in 2 months

and died. During her ICU stay at the same hospital she had the MRI, I was so

concerned about the medicine she was sedated with (Thinking then she had a

chance of life) that I made the doctors find out what it was. The ICU doctor

told me that she was overdosed double. Can you believe that? DOUBLE. I think

they are so booked for MRI’s that they give the kids too much medicine so

that they don’t wake up in the middle of the mRI and ruin their schedule

so they can go home! Leannn, who also has mito had 2 eustachian tube surgeries

and was given just enough sedation to knock her out for the 20 minute surgery

and was fine both times. Even then, we did not know she had mito either, but the doctor was careful. Now,

Leanna’s mito

doctor says if she ever needs sedation, he must be consulted throughout with

choice of med, amount and she will not fast , but have an IV throughout the

night. That , I am told, helps a lot. Samya, too, fasted from 12 am to about 12

pm. BAD IDEA FOR MITO. That has been my experience. I hope that helps.

I also want to add a quick note for all

the parents out there. Samya, at one point, took half a pill of ADDERALL for

ADD and had the same horiible reaction with slurring speech, abnormal facial

movements etc. The doctor did not think it was the adderall and so we tried a

quarter dose a week later and same reaction. Please be careful because the

doctors out there that do not know mito(which

is most) do not have a clue what permanent damage these meds can do. Leanna has

ADD but absolutely no medicine will be involved. School will have to deal with

it. I am not trying to tell you that I know for a fact that ADDERALL is mito toxic, because I do

not. I am only sharing my own experience. I hate to see what happened to Samya

repeat itself with any of our precious children. Maybe the reaction was a SAMYA

reaction only , but I doubt it.

God

bless,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: mr_lucy

Sent: Thursday, May 27, 2004 6:40

AM

To: Mito

Subject: Set backs after sedation?

I have a question for all of you concerning odd symptoms after being

put under for MRI/MR Spec.

Abigail went to Childrens DC

yeasterday for testing...she woke

quickly. Drink after about a half hour. We were

released. Normal,

but a little on the weak side yesterday.

Today, she is still walking in a croutched

position. When sedation

is involved...do mito kids often face a set back with gross

motor

skills or in other areas? She is eating well,

drinking...I expected

for Abby to be as well as she was prior to the MRI

by today. It

could be the fasting periods mark. As she had

fasted from 7pm to

11:30am the next day.

Any and all thoughts are welcome!

Thanks!

Myst

Please

contact mito-owner with any problems or questions.

[Guest guest]

Suhad

My son takes Adderall. I don't give it to him very much, but his teachers want him on it, beacause he sits in his chair like a zombie. I know he extremely hyper, but I just hating drugging him for who he is. I have never heard of such results, SCARY. I will think twice about giving him anymore until we see his neuro.

God Bless mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: <Mito > >Subject: RE: Set backs after sedation?/ ADDERALL warning >Date: Thu, 27 May 2004 08:39:00 -0700 > >I can only offer my expeience to you. Samya, my older daughter, who is now >dead, Had setbacks after an MRI sedation. First of all, let me tell you that >we had no diagnosis at the time. WE had never ever heard the word mito >disease. She was sedated in the hopes that an MRI would help the diagnosis. >I will never ever forget that day. She came out seeming ver "drunk", vomited >15 times that day, had slurred speech and could not walk one step without >falling over. We were released and told she might be a little sick for until >all the medicine wore out. What happened to her was severe and lasted more >than 24 hrs. In fact, for 2 nights we put her to sleep on the floor on her >mattress in our room for fear she would wake up at night and fall down the >stairs. She was 7 and a half years old at the time. I am not sure what the >medicin was (I think Nebutol). After that she slowly recovered into >functional, but she started having severe speech stuttering, and all her >skills were worse from cognitive to mental status to motor. At the time, we >had not put the slow deterioration to the sedation. She died about a year >after that MRI. The MRI, ironically, came back normal and gave us no >diagnosis, and yet the sedation helped destroy her. Looking back now, and >knowing she had mito . I have no doubt that MRI spiraled her downfall. A >year later, she got a virus and deteriorated quickly in 2 months and died. >During her ICU stay at the same hospital she had the MRI, I was so concerned >about the medicine she was sedated with (Thinking then she had a chance of >life) that I made the doctors find out what it was. The ICU doctor told me >that she was overdosed double. Can you believe that? DOUBLE. I think they >are so booked for MRI's that they give the kids too much medicine so that >they don't wake up in the middle of the mRI and ruin their schedule so they >can go home! Leannn, who also has mito had 2 eustachian tube surgeries and >was given just enough sedation to knock her out for the 20 minute surgery >and was fine both times. Even then, we did not know she had mito either, but >the doctor was careful. Now, Leanna's mito doctor says if she ever needs >sedation, he must be consulted throughout with choice of med, amount and she >will not fast , but have an IV throughout the night. That , I am told, helps >a lot. Samya, too, fasted from 12 am to about 12 pm. BAD IDEA FOR MITO. That >has been my experience. I hope that helps. > > I also want to add a quick note for all the parents out there. Samya, at >one point, took half a pill of ADDERALL for ADD and had the same horiible >reaction with slurring speech, abnormal facial movements etc. The doctor did >not think it was the adderall and so we tried a quarter dose a week later >and same reaction. Please be careful because the doctors out there that do >not know mito(which is most) do not have a clue what permanent damage these >meds can do. Leanna has ADD but absolutely no medicine will be involved. >School will have to deal with it. I am not trying to tell you that I know >for a fact that ADDERALL is mito toxic, because I do not. I am only sharing >my own experience. I hate to see what happened to Samya repeat itself with >any of our precious children. Maybe the reaction was a SAMYA reaction only , >but I doubt it. > > God bless, > > > > > > > >Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna >with same disease. > >Samya's Memorial Site: www.Samya.org > >Email: Suhad1970@... > >Alt Email: Suhad@... > >AiM Chat: Suhad1970 > > > > _____ > >From: mr_lucy >Sent: Thursday, May 27, 2004 6:40 AM >To: Mito >Subject: Set backs after sedation? > > > >I have a question for all of you concerning odd symptoms after being >put under for MRI/MR Spec. > >Abigail went to Childrens DC yeasterday for testing...she woke >quickly. Drink after about a half hour. We were released. Normal, >but a little on the weak side yesterday. > >Today, she is still walking in a croutched position. When sedation >is involved...do mito kids often face a set back with gross motor >skills or in other areas? She is eating well, drinking...I expected >for Abby to be as well as she was prior to the MRI by today. It >could be the fasting periods mark. As she had fasted from 7pm to >11:30am the next day. > >Any and all thoughts are welcome! > >Thanks! > >Myst > > > > > >Please contact mito-owner with any problems or questions. > > > > > > >

[Guest guest]

Our oldest son, , takes Adderall XR. Now don't know if there

is a difference between Adderall and Adderall XR. One you take twice

a day and the other is once a day. We are concerned with a few issues

for that could be mito but so far all testing (blood work up, MRI's,

Cat Scan, etc) are all coming back normal. Anyway is on 15

mg once a day. He isn't a zombie at school, so could your son have

too high of a dose? 's ADD was more for the inattention type,

not hyper. But he has a good appetite and stays much more focus in

school. He started on 10 mg and now he is up to 15 mg. We'll

see how that goes. But interesting about the affects it could have on mito.

Observe, observe, and take notes about what you see. It is always

important to let doctors know if there are any side affects at all.

takes a capsule form so was wondering if you pulled the capsules

apart to give only part of the dose.

Nerenhausen

mom to Leah

CARRIE CLARK wrote:

Suhad

My son takes Adderall. I don't give it to him very much, but his

teachers want him on it, beacause he sits in his chair like a zombie.

I know he extremely hyper, but I just hating drugging him for who he is.

I have never heard of such results, SCARY. I will think twice about

giving him anymore until we see his neuro.

God Bless

mom to Colby,14,COXIV,LCHAD,ACC,ADHD

,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy

> >Reply-To: Mito

>To: <Mito > >Subject: RE: Set backs after sedation?/

ADDERALL warning >Date: Thu, 27 May 2004 08:39:00 -0700 > >I can only offer

my expeience to you. Samya, my older daughter, who is now >dead, Had setbacks

after an MRI sedation. First of all, let me tell you that >we had no diagnosis

at the time. WE had never ever heard the word mito >disease. She was sedated

in the hopes that an MRI would help the diagnosis. >I will never ever forget

that day. She came out seeming ver "drunk", vomited >15 ! times that day,

had slurred speech and could not walk one step without >falling over. We

were released and told she might be a little sick for until >all the medicine

wore out. What happened to her was severe and lasted more >than 24 hrs.

In fact, for 2 nights we put her to sleep on the floor on her >mattress

in our room for fear she would wake up at night and fall down the >stairs.

She was 7 and a half years old at the time. I am not sure what the >medicin

was (I think Nebutol). After that she slowly recovered into >functional,

but she started having severe speech stuttering, and all her >skills were

worse from cognitive to mental status to motor. At the time, we >had not

put the slow deterioration to the sedation. She died about a year >after

that MRI. The MRI, ironically, came back normal and gave us no >diagnosis,

and yet the sedation helped destroy her. Looking back now, and >knowing

she had mito . I have no doubt that MRI spiraled h! er downfall. A >year

later, she got a virus and deteriorated quickl y in 2 months and died.

>During her ICU stay at the same hospital she had the MRI, I was so concerned

>about the medicine she was sedated with (Thinking then she had a chance

of >life) that I made the doctors find out what it was. The ICU doctor

told me >that she was overdosed double. Can you believe that? DOUBLE. I

think they >are so booked for MRI's that they give the kids too much medicine

so that >they don't wake up in the middle of the mRI and ruin their schedule

so they >can go home! Leannn, who also has mito had 2 eustachian tube surgeries

and >was given just enough sedation to knock her out for the 20 minute

surgery >and was fine both times. Even then, we did not know she had mito

either, but >the doctor was careful. Now, Leanna's mito doctor says if

she ever needs >sedation, he must be consulted throughout with choice of

med, amount and she >will not fast , but have an IV throughout the night.

That , I am told, helps >a lot. Sa! mya, too, fasted from 12 am to about

12 pm. BAD IDEA FOR MITO. That >has been my experience. I hope that helps.

> > I also want to add a quick note for all the parents out there. Samya,

at >one point, took half a pill of ADDERALL for ADD and had the same horiible

>reaction with slurring speech, abnormal facial movements etc. The doctor

did >not think it was the adderall and so we tried a quarter dose a week

later >and same reaction. Please be careful because the doctors out there

that do >not know mito(which is most) do not have a clue what permanent

damage these >meds can do. Leanna has ADD but absolutely no medicine will

be involved. >School will have to deal with it. I am not trying to tell

you that I know >for a fact that ADDERALL is mito toxic, because I do not.

I am only sharing >my own experience. I hate to see what happened to Samya

repeat itself with >any of our precious children. Maybe the reaction was

a SAMYA reaction only ,! >but I doubt it. > > God bless, > > > > > > ;

> >Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna >with same disease. > >Samya's Memorial Site: www.Samya.org > >Email:

Suhad1970@... > >Alt Email: Suhad@... > >AiM Chat: Suhad1970

> > > > _____ > >From: mr_lucy >Sent: Thursday,

May 27, 2004 6:40 AM >To: Mito >Subject: Set backs

after sedation? > > > >I have a question for all of you concerning odd

symptoms after being >put under for MRI/MR Spec. > >Abigail went to Childrens

DC yeasterday for testing...she woke >quickly. Drink after about a half

hour. We were released. Normal, >but a little on the weak side yesterday.

> >Today, she is still walking in a croutched position. When sedation >is

involved...do mito kids often face a set back with gross motor >skills

or in other areas? She is eating well, drinking...I expected >for Abby

! to be as well as she was prior to the MRI by today. It >could be the

fasting periods mark. As she had fasted from 7pm to >11:30am the next day.

> >Any and all thoughts are welcome! > >Thanks! > >Myst > > > > > >Please

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

> > > > >