Re: karlee's appt with dr.shoffner

[Guest guest]

hi everyone!

we made it back to knoxville,tn about 11pm last nite. we seen

dr.shoffner on tuesday and i had my husband drive down and pick us

up. i wasnt able to drive because i was so upset.

dr. shoffner said he could not be for sure that karlee has

mitochondrial disease. we took her mri films of her brain to the

appt. he came to the waiting area and called us back and put us in a

room and said he would be back in a few minutes. he was gone and gone

it seemed like forever. he came back in and said he had got 2 other

docs to look at her mri with him. he said she has severe brain

damage! he called it severe white matter disease and severe grey

matter disease. i really think he was surprised that she was alive

and sooo happy and sweet. he said her muscle biopsy done in jan was

so tiny, but it did show some mito problems?

i was wandering if any of your alls kids had a mri and if it was

normal or not????? and where should i go now????

we really liked dr.shoffner he was very honest he told us it didnt

matter what kind of disease it was, because her mri is soo bad! and

you would never know this by looking at her. she is little, smiles

all the time never cries unless i change her clothes. she looks to be

about 10mos olD, loves music and to be sung to.

her neurologist here is going to do a lumbar puncture on tuesday.

WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL HAS

CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS. SHE

WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

PLEASE!!

THANKS,

DAVONNE

[Guest guest]

hi everyone!

we made it back to knoxville,tn about 11pm last nite. we seen

dr.shoffner on tuesday and i had my husband drive down and pick us

up. i wasnt able to drive because i was so upset.

dr. shoffner said he could not be for sure that karlee has

mitochondrial disease. we took her mri films of her brain to the

appt. he came to the waiting area and called us back and put us in a

room and said he would be back in a few minutes. he was gone and gone

it seemed like forever. he came back in and said he had got 2 other

docs to look at her mri with him. he said she has severe brain

damage! he called it severe white matter disease and severe grey

matter disease. i really think he was surprised that she was alive

and sooo happy and sweet. he said her muscle biopsy done in jan was

so tiny, but it did show some mito problems?

i was wandering if any of your alls kids had a mri and if it was

normal or not????? and where should i go now????

we really liked dr.shoffner he was very honest he told us it didnt

matter what kind of disease it was, because her mri is soo bad! and

you would never know this by looking at her. she is little, smiles

all the time never cries unless i change her clothes. she looks to be

about 10mos olD, loves music and to be sung to.

her neurologist here is going to do a lumbar puncture on tuesday.

WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL HAS

CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS. SHE

WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

PLEASE!!

THANKS,

DAVONNE

[Guest guest]

hi everyone!

we made it back to knoxville,tn about 11pm last nite. we seen

dr.shoffner on tuesday and i had my husband drive down and pick us

up. i wasnt able to drive because i was so upset.

dr. shoffner said he could not be for sure that karlee has

mitochondrial disease. we took her mri films of her brain to the

appt. he came to the waiting area and called us back and put us in a

room and said he would be back in a few minutes. he was gone and gone

it seemed like forever. he came back in and said he had got 2 other

docs to look at her mri with him. he said she has severe brain

damage! he called it severe white matter disease and severe grey

matter disease. i really think he was surprised that she was alive

and sooo happy and sweet. he said her muscle biopsy done in jan was

so tiny, but it did show some mito problems?

i was wandering if any of your alls kids had a mri and if it was

normal or not????? and where should i go now????

we really liked dr.shoffner he was very honest he told us it didnt

matter what kind of disease it was, because her mri is soo bad! and

you would never know this by looking at her. she is little, smiles

all the time never cries unless i change her clothes. she looks to be

about 10mos olD, loves music and to be sung to.

her neurologist here is going to do a lumbar puncture on tuesday.

WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL HAS

CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS. SHE

WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

PLEASE!!

THANKS,

DAVONNE

[Guest guest]

Davone, I have a very good friend whose daughter was born with only

a brain stem. She is a twin and her and her sister had twin to twin

transfusion. At day 10 they did an MRI and it showed very little

brain matter. At age one they repeated the MRI and it showed that

what she did have died off. Now she only has a brain stem. She

does not have mito so she does not have the potential of her organs

being further affected. She is 6 now, can smile, and coo's to

people she knows. She will cry when she is scared. She also can

laugh. It is really neat to see how she interacts with others. She

knows there are people around her. I know your situations are

different but if you would like I can send you her e-mail. I know

she would be willing to talk to you. E-mail me privately if you are

interested.

Geri-Anne and Wyatt, complex I-

p.s. we live in Minnesota

-- In Mito , " davonneatkins "

wrote:

>

>

> hi everyone!

>

> we made it back to knoxville,tn about 11pm last nite. we seen

> dr.shoffner on tuesday and i had my husband drive down and pick us

> up. i wasnt able to drive because i was so upset.

> dr. shoffner said he could not be for sure that karlee has

> mitochondrial disease. we took her mri films of her brain to the

> appt. he came to the waiting area and called us back and put us in

a

> room and said he would be back in a few minutes. he was gone and

gone

> it seemed like forever. he came back in and said he had got 2

other

> docs to look at her mri with him. he said she has severe brain

> damage! he called it severe white matter disease and severe grey

> matter disease. i really think he was surprised that she was alive

> and sooo happy and sweet. he said her muscle biopsy done in jan

was

> so tiny, but it did show some mito problems?

> i was wandering if any of your alls kids had a mri and if it was

> normal or not????? and where should i go now????

>

> we really liked dr.shoffner he was very honest he told us it didnt

> matter what kind of disease it was, because her mri is soo bad!

and

> you would never know this by looking at her. she is little, smiles

> all the time never cries unless i change her clothes. she looks to

be

> about 10mos olD, loves music and to be sung to.

>

> her neurologist here is going to do a lumbar puncture on tuesday.

> WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL

HAS

> CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS.

SHE

> WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

> FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

>

> PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

> PLEASE!!

>

> THANKS,

> DAVONNE

[Guest guest]

Davone, I have a very good friend whose daughter was born with only

a brain stem. She is a twin and her and her sister had twin to twin

transfusion. At day 10 they did an MRI and it showed very little

brain matter. At age one they repeated the MRI and it showed that

what she did have died off. Now she only has a brain stem. She

does not have mito so she does not have the potential of her organs

being further affected. She is 6 now, can smile, and coo's to

people she knows. She will cry when she is scared. She also can

laugh. It is really neat to see how she interacts with others. She

knows there are people around her. I know your situations are

different but if you would like I can send you her e-mail. I know

she would be willing to talk to you. E-mail me privately if you are

interested.

Geri-Anne and Wyatt, complex I-

p.s. we live in Minnesota

-- In Mito , " davonneatkins "

wrote:

>

>

> hi everyone!

>

> we made it back to knoxville,tn about 11pm last nite. we seen

> dr.shoffner on tuesday and i had my husband drive down and pick us

> up. i wasnt able to drive because i was so upset.

> dr. shoffner said he could not be for sure that karlee has

> mitochondrial disease. we took her mri films of her brain to the

> appt. he came to the waiting area and called us back and put us in

a

> room and said he would be back in a few minutes. he was gone and

gone

> it seemed like forever. he came back in and said he had got 2

other

> docs to look at her mri with him. he said she has severe brain

> damage! he called it severe white matter disease and severe grey

> matter disease. i really think he was surprised that she was alive

> and sooo happy and sweet. he said her muscle biopsy done in jan

was

> so tiny, but it did show some mito problems?

> i was wandering if any of your alls kids had a mri and if it was

> normal or not????? and where should i go now????

>

> we really liked dr.shoffner he was very honest he told us it didnt

> matter what kind of disease it was, because her mri is soo bad!

and

> you would never know this by looking at her. she is little, smiles

> all the time never cries unless i change her clothes. she looks to

be

> about 10mos olD, loves music and to be sung to.

>

> her neurologist here is going to do a lumbar puncture on tuesday.

> WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL

HAS

> CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS.

SHE

> WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

> FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

>

> PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

> PLEASE!!

>

> THANKS,

> DAVONNE

[Guest guest]

Davone, I have a very good friend whose daughter was born with only

a brain stem. She is a twin and her and her sister had twin to twin

transfusion. At day 10 they did an MRI and it showed very little

brain matter. At age one they repeated the MRI and it showed that

what she did have died off. Now she only has a brain stem. She

does not have mito so she does not have the potential of her organs

being further affected. She is 6 now, can smile, and coo's to

people she knows. She will cry when she is scared. She also can

laugh. It is really neat to see how she interacts with others. She

knows there are people around her. I know your situations are

different but if you would like I can send you her e-mail. I know

she would be willing to talk to you. E-mail me privately if you are

interested.

Geri-Anne and Wyatt, complex I-

p.s. we live in Minnesota

-- In Mito , " davonneatkins "

wrote:

>

>

> hi everyone!

>

> we made it back to knoxville,tn about 11pm last nite. we seen

> dr.shoffner on tuesday and i had my husband drive down and pick us

> up. i wasnt able to drive because i was so upset.

> dr. shoffner said he could not be for sure that karlee has

> mitochondrial disease. we took her mri films of her brain to the

> appt. he came to the waiting area and called us back and put us in

a

> room and said he would be back in a few minutes. he was gone and

gone

> it seemed like forever. he came back in and said he had got 2

other

> docs to look at her mri with him. he said she has severe brain

> damage! he called it severe white matter disease and severe grey

> matter disease. i really think he was surprised that she was alive

> and sooo happy and sweet. he said her muscle biopsy done in jan

was

> so tiny, but it did show some mito problems?

> i was wandering if any of your alls kids had a mri and if it was

> normal or not????? and where should i go now????

>

> we really liked dr.shoffner he was very honest he told us it didnt

> matter what kind of disease it was, because her mri is soo bad!

and

> you would never know this by looking at her. she is little, smiles

> all the time never cries unless i change her clothes. she looks to

be

> about 10mos olD, loves music and to be sung to.

>

> her neurologist here is going to do a lumbar puncture on tuesday.

> WHAT DOES THIS SHOW? SHE HAS HAD LOT OF BLOOD WORK DONE AND ALL

HAS

> CAME BACK NORMAL. HE SAID RIGHT NOW WE WILL TREAT HER SYMPTOMS.

SHE

> WAS SUCKING HER BOTTLE PRETTY GOOD UNTIL TUES, SO I DOING PEG TUBE

> FEEDING EVERY 3 HRS IN DAY AND A CONTINOUS FEED AT NITE.

>

> PLEASE HELP ME WITH ANY COMMENTS ANYONE HAS!!!!

> PLEASE!!

>

> THANKS,

> DAVONNE

[Guest guest]

Hi Davonne, My son was diagnosed 5 1/2 years ago with, epilepsy,

reflux, failure to thrive, developemental delays, and white matter

disease was diagnosed through MRI, 6 months later he had another MRI

and we were told it spread to his gray matter, his neurologist told

us this was a serious and complexed disease. We were referred to the

Leukodystophy Foundation, they have an online site,half a year later

he had a muscle biopsy, and was diagnosed with MITO. He also has pdd-

autism and scoliosis, he is fed via g-tube, and is on a pulse ox

monitor and apnea monitor when sleeping. He has a MRI every 6 months

since his first MRI, and by the grace of God his white and gray

matter has not deteriorated anymore since his 1st two MRI's. HE is

now 7 years old, and will turn 8 years old this coming June, my son

has autistic support at school but is intergrated in a 2nd grade

class. He is doing very well, and surprising all of his doctors and

teachers and family!! So there is always hope. HE did start out in

early intervention where he recieved alot of occupational, physical,

speech and feeding therapies, then in preschool we added behavioral

therapy, and sensory intergration therapy, and water therapy. And as

a family and i'm including his siblings, we learned how to help

Matt. With the help of all his specialist, therapist, nurses,

teachers and our family, and expecially support groups like this

one , the Muscular Dystrophy Association, the Leukodystrophy

Foundation, the United Mitochondrial Disease Foundation we have

learned so much. The best prognosis we were given, by Matts

neurologist was: LOOK WHAT MATT CAN DO TODAY, and we say that every

morning when we wake up and every night when we go to bed, and it

really helps us help Matt be all he can be. We had parent teacher

meeting last night and we were thrilled and smiled when his teacher

told us where Matt is academically, (he is still developementally

delayed) she said we are the only parents she has ever seen smiling

when told their child is below average, and my reply to her was He is

alive that is what is important to us, she smiled and fully

understood where we were coming from. WE will keep you and Karlee

in our thoughts and prayers, and remember miracles really do happen,

and those miracles are our children!!!! Barb, matts_mom96