Re: Anne R-Future of Mito Kids/help

[Guest guest]

Hi,

I did ask the question to Dr. Boles last night and he said that he sees many mito diseases that are not progressive and don't end up with cognitive problems.

I guess, though, I don't feel assured. After last night's chat, I start thinking, if they aren't able to say that muscle biopsies are definitive, and labs shift from normal to not normal often, then how can I feel assured that my son (if he even does have mito) has one of the 'non-progressive' forms? How can I be assured that he's not going to have a cognitive regression?

Any ideas?

Anne R

[Guest guest]

Hi,

I did ask the question to Dr. Boles last night and he said that he sees many mito diseases that are not progressive and don't end up with cognitive problems.

I guess, though, I don't feel assured. After last night's chat, I start thinking, if they aren't able to say that muscle biopsies are definitive, and labs shift from normal to not normal often, then how can I feel assured that my son (if he even does have mito) has one of the 'non-progressive' forms? How can I be assured that he's not going to have a cognitive regression?

Any ideas?

Anne R

[Guest guest]

Dear Anne;

There is nothing in this life that is assured except that we are born to

die!

With this as an assurance, it then behoofs us to take one day at a time and

maximize our living day by day, hour by hour and minute by minute.

Dr Boles gave you the only answer he could ... an answer containing hope

and an allusion to percentage. Even on this list there most likely is a

greater percentage of less involved or profound Mitochondrial symptomatology.

Therein lies your hope, my friend. Also, take hope from the exponential

learning curve upwards in Mitochondrial medicine in the past 20 years. In

1985, I was trying to find out what was wrong with me. In 1991, the technology

had advanced to the point that I could be diagnosed! In 2004 ... you really

don't have the expectation of having to wait 6 frustrating years for diagnosis!

Can you possibly live life to its fullest unless you have hope? When your

little boy finally has a diagnosis, will he be the same little loveable charmer

the minute after you know his diagnosis as he was before the words are delivered

to you? Will you love him less once he has a "label"?

In an odd twist of fate, parents of an obviously disabled child are luckier

than the parents of a child who runs out on the street and gets killed by

a passing vehicle. These suddenly bereaved parents have never been forced

to face the reality that our hold on our lives is tenuous. These parents

have never had to make the conscious decision that the families living with

Mito have to make, namely the decision to live life to the fullest now because

tomorrow your circumstances may change!

Take hope, Anne, and run with it. It is what will bring joy into your life

and replace that fear that every parent there ever was has in the beginning!

With hope,

Jean Shepherd, granny with Mito diagnosis

AReckling@... wrote:

I did ask the question to Dr. Boles last night and

he said that he sees many mito diseases that are not progressive and don't

end up with cognitive problems.

I guess, though, I don't feel assured. After last night's chat, I start

thinking, if they aren't able to say that muscle biopsies are definitive,

and labs shift from normal to not normal often, then how can I feel assured

that my son (if he even does have mito) has one of the 'non-progressive'

forms? How can I be assured that he's not going to have a cognitive regression?

Any ideas?

Anne R

[Guest guest]

Dear Anne;

There is nothing in this life that is assured except that we are born to

die!

With this as an assurance, it then behoofs us to take one day at a time and

maximize our living day by day, hour by hour and minute by minute.

Dr Boles gave you the only answer he could ... an answer containing hope

and an allusion to percentage. Even on this list there most likely is a

greater percentage of less involved or profound Mitochondrial symptomatology.

Therein lies your hope, my friend. Also, take hope from the exponential

learning curve upwards in Mitochondrial medicine in the past 20 years. In

1985, I was trying to find out what was wrong with me. In 1991, the technology

had advanced to the point that I could be diagnosed! In 2004 ... you really

don't have the expectation of having to wait 6 frustrating years for diagnosis!

Can you possibly live life to its fullest unless you have hope? When your

little boy finally has a diagnosis, will he be the same little loveable charmer

the minute after you know his diagnosis as he was before the words are delivered

to you? Will you love him less once he has a "label"?

In an odd twist of fate, parents of an obviously disabled child are luckier

than the parents of a child who runs out on the street and gets killed by

a passing vehicle. These suddenly bereaved parents have never been forced

to face the reality that our hold on our lives is tenuous. These parents

have never had to make the conscious decision that the families living with

Mito have to make, namely the decision to live life to the fullest now because

tomorrow your circumstances may change!

Take hope, Anne, and run with it. It is what will bring joy into your life

and replace that fear that every parent there ever was has in the beginning!

With hope,

Jean Shepherd, granny with Mito diagnosis

AReckling@... wrote:

I did ask the question to Dr. Boles last night and

he said that he sees many mito diseases that are not progressive and don't

end up with cognitive problems.

I guess, though, I don't feel assured. After last night's chat, I start

thinking, if they aren't able to say that muscle biopsies are definitive,

and labs shift from normal to not normal often, then how can I feel assured

that my son (if he even does have mito) has one of the 'non-progressive'

forms? How can I be assured that he's not going to have a cognitive regression?

Any ideas?

Anne R

[Guest guest]

Thanks everyone. Most days I can take it a day at a time, feel hopeful, etc. and just take such pleasure in being with my children, but, last night, everything just upset me. I even had a nightmare about it all.But, today, I feel better and back to my more upbeat attitude.

Thanks,

Anne R

[Guest guest]

Thanks everyone. Most days I can take it a day at a time, feel hopeful, etc. and just take such pleasure in being with my children, but, last night, everything just upset me. I even had a nightmare about it all.But, today, I feel better and back to my more upbeat attitude.

Thanks,

Anne R

[Guest guest]

Hi Anne,

I can hear your heart beating as you send this message. I also read

Jean's very heartwarming post to you regarding your feelings. I

want you to know that I fully agree with what Jean has told you.

I raised 4 children and I have 14 grandchildren. Three of my four

children are diagnosed and 7 of the grandchildren. We savor every

moment we have together and take care of the medical issues as they

arise. This is not to say that we have not mourned the fact that we

have this desease but work hard to make the very best we can out of

all situations. One of the most important things for us is to try

to live life as normally as possible, not letting medical issues

take presidence.

No one - not even the best doctors - can give you the answer to the

questions you are asking. They don't have this power. They can

tell you the potentials but never the real answer. No one can tell

parents of healthy children what the future will bring them either.

Yes.. this disease is a mystery. Test results can change from one

day to another. Biopsies are normally accurate but other doctors

will question them. There is still a great deal to learn and we

have to be active in self advocating and continue with that advocacy

for as long as it takes.

Treat the symptoms as they come and enjoy your child. Being a

mother is the best profession that I know of. Cherish every moment.

I am glad I met you in the chat last night and hope you come back

again. Please try to take one day at a time and have faith that you

are doing your very best as a Mom.

Alice (justagram)

> Hi,

>

> I did ask the question to Dr. Boles last night and he said that he

sees many

> mito diseases that are not progressive and don't end up with

cognitive

> problems.

>

> I guess, though, I don't feel assured. After last night's chat, I

start

> thinking, if they aren't able to say that muscle biopsies are

definitive, and labs

> shift from normal to not normal often, then how can I feel assured

that my son

> (if he even does have mito) has one of the 'non-progressive'

forms? How can I

> be assured that he's not going to have a cognitive regression?

>

> Any ideas?

>

> Anne R

[Guest guest]

Very well said! I share the worries that Anne has; nevertheless, my life has vastly improved since I started living each day in the moment!

Best to all, Lori and , complex I and IV

Re: Anne R-Future of Mito Kids/help

Dear Anne;There is nothing in this life that is assured except that we are born to die!With this as an assurance, it then behoofs us to take one day at a time and maximize our living day by day, hour by hour and minute by minute.Dr Boles gave you the only answer he could ... an answer containing hope and an allusion to percentage. Even on this list there most likely is a greater percentage of less involved or profound Mitochondrial symptomatology. Therein lies your hope, my friend. Also, take hope from the exponential learning curve upwards in Mitochondrial medicine in the past 20 years. In 1985, I was trying to find out what was wrong with me. In 1991, the technology had advanced to the point that I could be diagnosed! In 2004 ... you really don't have the expectation of having to wait 6 frustrating years for diagnosis!Can you possibly live life to its fullest unless you have hope? When your little boy finally has a diagnosis, will he be the same little loveable charmer the minute after you know his diagnosis as he was before the words are delivered to you? Will you love him less once he has a "label"?In an odd twist of fate, parents of an obviously disabled child are luckier than the parents of a child who runs out on the street and gets killed by a passing vehicle. These suddenly bereaved parents have never been forced to face the reality that our hold on our lives is tenuous. These parents have never had to make the conscious decision that the families living with Mito have to make, namely the decision to live life to the fullest now because tomorrow your circumstances may change!Take hope, Anne, and run with it. It is what will bring joy into your life and replace that fear that every parent there ever was has in the beginning!With hope,Jean Shepherd, granny with Mito diagnosisAReckling@... wrote:

I did ask the question to Dr. Boles last night and he said that he sees many mito diseases that are not progressive and don't end up with cognitive problems.I guess, though, I don't feel assured. After last night's chat, I start thinking, if they aren't able to say that muscle biopsies are definitive, and labs shift from normal to not normal often, then how can I feel assured that my son (if he even does have mito) has one of the 'non-progressive' forms? How can I be assured that he's not going to have a cognitive regression?Any ideas?Anne R Please contact mito-owner with any problems or questions.