Re: Disturbing conversation with doctor

[Guest guest]

Hi ,

had a skin and muscle biopsy done and they came back normal.

That's what I mean about the kids, it's like they have a mito disorder but

they don't. Other than the physical regressing, they are pretty healthy.

They don't seem to have a problem metabolizing anything and they don't have

lactic acid problems. It's very confusing! I know you're scared, I've been

there. Try to hang in there until Friday and do let us know what's up. I

will keep you in my thoughts.

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

's MRI is completely >cares me because baby #2 is due in June and I

worry that it will have the same disorder. Have >they done muscle biopsies

on your children?

>

> Believe it or not, when my son first developed nystagmus a year ago, I

went to the geneticist and >asked her if my son could possibly have Leigh's.

She said that only girls get that disease. How >STUPID! Again, Children's

Hospital in D.C. My son does seem to be regressing mentally, at least >over

the past three months. When he was a baby he was considered cognitively

advanced. At 17 >months, when he started his Early Intervention Program,

they tested him at the 3-year-old >developmental level for cognitive skills!

Now he seems to be at the level of a 15 month old, >intellectually. I don't

know if this is really mental deterioration, or due to the onset of autistic

>tendencies, which leaves him with one foot in this world and one foot out.

>

> Guess I'll let you all know what they say on Friday. I'm really scared.

[Guest guest]

Hi ,

had a skin and muscle biopsy done and they came back normal.

That's what I mean about the kids, it's like they have a mito disorder but

they don't. Other than the physical regressing, they are pretty healthy.

They don't seem to have a problem metabolizing anything and they don't have

lactic acid problems. It's very confusing! I know you're scared, I've been

there. Try to hang in there until Friday and do let us know what's up. I

will keep you in my thoughts.

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

's MRI is completely >cares me because baby #2 is due in June and I

worry that it will have the same disorder. Have >they done muscle biopsies

on your children?

>

> Believe it or not, when my son first developed nystagmus a year ago, I

went to the geneticist and >asked her if my son could possibly have Leigh's.

She said that only girls get that disease. How >STUPID! Again, Children's

Hospital in D.C. My son does seem to be regressing mentally, at least >over

the past three months. When he was a baby he was considered cognitively

advanced. At 17 >months, when he started his Early Intervention Program,

they tested him at the 3-year-old >developmental level for cognitive skills!

Now he seems to be at the level of a 15 month old, >intellectually. I don't

know if this is really mental deterioration, or due to the onset of autistic

>tendencies, which leaves him with one foot in this world and one foot out.

>

> Guess I'll let you all know what they say on Friday. I'm really scared.

[Guest guest]

Sue,

Were the muscle biopsy done on fresh tissue, or was it frozen? 's

first biopsy came back normal, but it was on frozen tissue. When we took

her to Emory, they used fresh tissue and it came back positive. I know that

many doctors believe that it doesn't matter, but I know that we are not the

first to have to go through that procedure twice to get an accurate

diagnosis. ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

Sue,

Were the muscle biopsy done on fresh tissue, or was it frozen? 's

first biopsy came back normal, but it was on frozen tissue. When we took

her to Emory, they used fresh tissue and it came back positive. I know that

many doctors believe that it doesn't matter, but I know that we are not the

first to have to go through that procedure twice to get an accurate

diagnosis. ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

Sue,

Were the muscle biopsy done on fresh tissue, or was it frozen? 's

first biopsy came back normal, but it was on frozen tissue. When we took

her to Emory, they used fresh tissue and it came back positive. I know that

many doctors believe that it doesn't matter, but I know that we are not the

first to have to go through that procedure twice to get an accurate

diagnosis. ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

,

You are absolutely right in doing whatever you can so you can see doctors

that you are comfortable with. We had a pediatric neurologist tell us that

just by my family history he is sure that I am a carrier and that both I and

the boys have a mito disorder as well as . My history includes

migraine and some addiction issues with my mom and two of my brothers. I am

not saying that he is wrong - I don't know, but I do believe that flat out

statements such as this - that imply serious consequences without proof are

just not right. It would be one thing if I didn't want to know the truth -

and was minimizing it because of that - but I think it is dangerous for

anyone to jump to conclusions from insufficient information. Not having a

definite diagnosis is very frustrating, but it is better not to have one

than to have one that you don't trust.

As far as the prognosis issue - All I can say is that was supposed to

die long ago - and she is still alive and kicking. Over time, and I

became less concerned with her dying and more concerned with her living.

That transition brings with it incredible relief and a sense of peace with

whatever life will bring. I truly believe that how long lives is

less important then the quality of the life she has while living. Who am I

to decide how long is long enough. If she is happy and enjoys her life then

that is really all I can ask for - that is where we put our energy and

focus. That doesn't mean that a process of grieving the loss of certain

dreams was easy, it just means that a lot of pressure is taken off of you

when you realize that the life they have is not less valuable because it

isn't the one you planned for - it is just different. Sometimes I think it

must be nice for her not to understand all of the worries of the world.

Good luck - and don't worry about the baby - my next one is just fine.

Spend your time enjoying the prospect of a new baby - worrying isn't going

to change a thing, just rob you of your peace of mind.

ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

,

You are absolutely right in doing whatever you can so you can see doctors

that you are comfortable with. We had a pediatric neurologist tell us that

just by my family history he is sure that I am a carrier and that both I and

the boys have a mito disorder as well as . My history includes

migraine and some addiction issues with my mom and two of my brothers. I am

not saying that he is wrong - I don't know, but I do believe that flat out

statements such as this - that imply serious consequences without proof are

just not right. It would be one thing if I didn't want to know the truth -

and was minimizing it because of that - but I think it is dangerous for

anyone to jump to conclusions from insufficient information. Not having a

definite diagnosis is very frustrating, but it is better not to have one

than to have one that you don't trust.

As far as the prognosis issue - All I can say is that was supposed to

die long ago - and she is still alive and kicking. Over time, and I

became less concerned with her dying and more concerned with her living.

That transition brings with it incredible relief and a sense of peace with

whatever life will bring. I truly believe that how long lives is

less important then the quality of the life she has while living. Who am I

to decide how long is long enough. If she is happy and enjoys her life then

that is really all I can ask for - that is where we put our energy and

focus. That doesn't mean that a process of grieving the loss of certain

dreams was easy, it just means that a lot of pressure is taken off of you

when you realize that the life they have is not less valuable because it

isn't the one you planned for - it is just different. Sometimes I think it

must be nice for her not to understand all of the worries of the world.

Good luck - and don't worry about the baby - my next one is just fine.

Spend your time enjoying the prospect of a new baby - worrying isn't going

to change a thing, just rob you of your peace of mind.

ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

,

You are absolutely right in doing whatever you can so you can see doctors

that you are comfortable with. We had a pediatric neurologist tell us that

just by my family history he is sure that I am a carrier and that both I and

the boys have a mito disorder as well as . My history includes

migraine and some addiction issues with my mom and two of my brothers. I am

not saying that he is wrong - I don't know, but I do believe that flat out

statements such as this - that imply serious consequences without proof are

just not right. It would be one thing if I didn't want to know the truth -

and was minimizing it because of that - but I think it is dangerous for

anyone to jump to conclusions from insufficient information. Not having a

definite diagnosis is very frustrating, but it is better not to have one

than to have one that you don't trust.

As far as the prognosis issue - All I can say is that was supposed to

die long ago - and she is still alive and kicking. Over time, and I

became less concerned with her dying and more concerned with her living.

That transition brings with it incredible relief and a sense of peace with

whatever life will bring. I truly believe that how long lives is

less important then the quality of the life she has while living. Who am I

to decide how long is long enough. If she is happy and enjoys her life then

that is really all I can ask for - that is where we put our energy and

focus. That doesn't mean that a process of grieving the loss of certain

dreams was easy, it just means that a lot of pressure is taken off of you

when you realize that the life they have is not less valuable because it

isn't the one you planned for - it is just different. Sometimes I think it

must be nice for her not to understand all of the worries of the world.

Good luck - and don't worry about the baby - my next one is just fine.

Spend your time enjoying the prospect of a new baby - worrying isn't going

to change a thing, just rob you of your peace of mind.

ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: <Mitoonelist>

>Subject: Re: Disturbing conversation with doctor

>Date: Sun, Oct 24, 1999, 11:16 PM

>

>

>

> Hi ,

> had a skin and muscle biopsy done and they came back normal.

> That's what I mean about the kids, it's like they have a mito disorder but

> they don't. Other than the physical regressing, they are pretty healthy.

> They don't seem to have a problem metabolizing anything and they don't have

> lactic acid problems. It's very confusing! I know you're scared, I've been

> there. Try to hang in there until Friday and do let us know what's up. I

> will keep you in my thoughts.

>

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

> tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>

>> I know that the MRI lesions are pretty often diagnostic of Leigh's, but

> 's MRI is completely >cares me because baby #2 is due in June and I

> worry that it will have the same disorder. Have >they done muscle biopsies

> on your children?

>>

>> Believe it or not, when my son first developed nystagmus a year ago, I

> went to the geneticist and >asked her if my son could possibly have Leigh's.

> She said that only girls get that disease. How >STUPID! Again, Children's

> Hospital in D.C. My son does seem to be regressing mentally, at least >over

> the past three months. When he was a baby he was considered cognitively

> advanced. At 17 >months, when he started his Early Intervention Program,

> they tested him at the 3-year-old >developmental level for cognitive skills!

> Now he seems to be at the level of a 15 month old, >intellectually. I don't

> know if this is really mental deterioration, or due to the onset of autistic

>>tendencies, which leaves him with one foot in this world and one foot out.

>>

>> Guess I'll let you all know what they say on Friday. I'm really scared.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

[Guest guest]

Hi Lou,

It was a fresh biopsy. I had it done at UCSD, the OTHER fresh muscle

biopsy place. )

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> Sue,

> Were the muscle biopsy done on fresh tissue, or was it frozen? 's

> first biopsy came back normal, but it was on frozen tissue. When we took

> her to Emory, they used fresh tissue and it came back positive. I know

that

> many doctors believe that it doesn't matter, but I know that we are not

the

> first to have to go through that procedure twice to get an accurate

> diagnosis. ML

[Guest guest]

,

I'm sure almost everybody on this list could tell you that

at one time or another their child's life expectancy was

very short. In our case, when Laney was diagnosed the day

before her first birthday, we were told we would be lucky if

she lived to age three--and based on how she was doing at

that point they expected she would only live weeks or

months. Well, she is now 3 1/2 and doing better than she

has since she was 9 months old.

Two things have helped me deal with the fact that she could

live well into adulthood, or die this winter...

First of all, when we were dealing with the fact that our

child was going to have a very limited life, I was very

depressed. I told my husband that once she died I would

never be able to be happy again--100% full of joy. He said

" I don't know why this has happened to our child, to us, but

I do know one thing for certain. That child did not come

into our lives to make us miserable. She came into our

lives to bring us joy. " All of a sudden a lightbulb went

off. I could be 100% happy the rest of my life, no matter

how long she lived--because what mattered wasn't that I was

going to lose her, but that I was lucky enough ever to have

had her. The joy of the gift I was given will last my

entire life--not that I won't be sad and it won't be

unthinkably difficult. But it will always be joy that she

came to us.

The second thing that helped was developing a belief that

what matters in life is not how long one lives or how many

" accomplishments " one can list. What matters is how much

you are loved, how much you give love and how many people's

lives you make a positive impact upon. I know at three that

Laney has already done more of this than my

great-grandfather who lived to be 101. Her life is joy, her

life is full of meaning--she has done important work! We

will revel in it as long as she is willing/able to hang out

with us here...

Sorry to be so long-winded--

, Mom to Adelaine and Baby ?

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

Thank you so much for your nice message. You are very insightful and your

message touched me a lot. My

husband printed this out and gave it to me to read to cheer me up.

I don't really know what else to say, but that I find your words encouraging and

comforting and I really

appreciate your sharing this experience with me and the rest of the list.

Best always,

The 's wrote:

>

>

> ,

>

> I'm sure almost everybody on this list could tell you that

> at one time or another their child's life expectancy was

> very short. In our case, when Laney was diagnosed the day

> before her first birthday, we were told we would be lucky if

> she lived to age three--and based on how she was doing at

> that point they expected she would only live weeks or

> months. Well, she is now 3 1/2 and doing better than she

> has since she was 9 months old.

>

> Two things have helped me deal with the fact that she could

> live well into adulthood, or die this winter...

>

> First of all, when we were dealing with the fact that our

> child was going to have a very limited life, I was very

> depressed. I told my husband that once she died I would

> never be able to be happy again--100% full of joy. He said

> " I don't know why this has happened to our child, to us, but

> I do know one thing for certain. That child did not come

> into our lives to make us miserable. She came into our

> lives to bring us joy. " All of a sudden a lightbulb went

> off. I could be 100% happy the rest of my life, no matter

> how long she lived--because what mattered wasn't that I was

> going to lose her, but that I was lucky enough ever to have

> had her. The joy of the gift I was given will last my

> entire life--not that I won't be sad and it won't be

> unthinkably difficult. But it will always be joy that she

> came to us.

>

> The second thing that helped was developing a belief that

> what matters in life is not how long one lives or how many

> " accomplishments " one can list. What matters is how much

> you are loved, how much you give love and how many people's

> lives you make a positive impact upon. I know at three that

> Laney has already done more of this than my

> great-grandfather who lived to be 101. Her life is joy, her

> life is full of meaning--she has done important work! We

> will revel in it as long as she is willing/able to hang out

> with us here...

>

> Sorry to be so long-winded--

>

> , Mom to Adelaine and Baby ?

>

> --

> The s

> , , Adelaine and Baby?

> Ann Arbor, MI

> http://www.mich/com/~jaj

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

Dear ,

Have they checked his hearing? If they are unable to do an

audiogram/tympanogram, they can do what is called a brain-stem audiogram. I

don't know your child's medical history as I am an adult patient new to the

list. It was just a thought. Hearing loss can have a profound impact on a

child and their behavior. B

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Disturbing conversation with doctor

>Date: Sat, 23 Oct 1999 09:02:37 -0700

>

>Yes, the accent was on " clinical diagnosis, " meaning based upon the

>observed symptoms and nothing else,

>since all lab work is negative. Of course he could still have something

>that isn't even mitochondrial at

>all, such as neuroaxonal dystrophy. My concern is that, over the last

>three months, has seemed to go

>from terrific (the best he's ever been) to not understanding a word anyone

>says, going around the house

>grunting and blinking, in his own little world. I guess I shouldn't have

>mentioned this to the doctor, as

>she is putting it into the picture without even having seen him yet.

>

>

>

>Arrants@... wrote:

>

> > From: Arrants@...

> >

> > In a message dated 10/22/1999 3:09:13 PM Eastern Daylight Time,

> > sfitzger@... writes:

> >

> > > when I briefly described 's symptoms (pale optic nerves,

> > > nystagmus, developmental delay)

> > > she said that whenever you have neurological symptoms such as those

>the

> > > clinical diagnosis is always

> > > Leighs disease.

> >

> > Steve, when I read this, the accent seemed to be on the word " clinical. "

>Is a

> > clinical diagnosis different from other types of diagnosis? Maybe the

> > diagnosis arrived at on the basis of presented symptoms as opposed to

> > testing? I have several diagnoses based on various criteria, but the

>biopsy

> > showed something else altogether. I'm not an MD, so do check it out.

> >

> > the Elder

> >

> > > Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

Dear ,

Have they checked his hearing? If they are unable to do an

audiogram/tympanogram, they can do what is called a brain-stem audiogram. I

don't know your child's medical history as I am an adult patient new to the

list. It was just a thought. Hearing loss can have a profound impact on a

child and their behavior. B

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Disturbing conversation with doctor

>Date: Sat, 23 Oct 1999 09:02:37 -0700

>

>Yes, the accent was on " clinical diagnosis, " meaning based upon the

>observed symptoms and nothing else,

>since all lab work is negative. Of course he could still have something

>that isn't even mitochondrial at

>all, such as neuroaxonal dystrophy. My concern is that, over the last

>three months, has seemed to go

>from terrific (the best he's ever been) to not understanding a word anyone

>says, going around the house

>grunting and blinking, in his own little world. I guess I shouldn't have

>mentioned this to the doctor, as

>she is putting it into the picture without even having seen him yet.

>

>

>

>Arrants@... wrote:

>

> > From: Arrants@...

> >

> > In a message dated 10/22/1999 3:09:13 PM Eastern Daylight Time,

> > sfitzger@... writes:

> >

> > > when I briefly described 's symptoms (pale optic nerves,

> > > nystagmus, developmental delay)

> > > she said that whenever you have neurological symptoms such as those

>the

> > > clinical diagnosis is always

> > > Leighs disease.

> >

> > Steve, when I read this, the accent seemed to be on the word " clinical. "

>Is a

> > clinical diagnosis different from other types of diagnosis? Maybe the

> > diagnosis arrived at on the basis of presented symptoms as opposed to

> > testing? I have several diagnoses based on various criteria, but the

>biopsy

> > showed something else altogether. I'm not an MD, so do check it out.

> >

> > the Elder

> >

> > > Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>