Reintroducing ourselves...(Long)

[Guest guest]

I first posted to this wonderful group last fall. I read this board

everyday--I have learned so much and have the greatest respect for

each and everyone of you. My twins are now 2 1/2 years old. One

became ill at 20 months of age, the other at 22 months of age. Dr.

Whiteman saved their lives. We live in Minneapolis--we spent 4

months of precious time at several of the hospitals here with no

answers-- we drove to Rochester out of desperation Dr. Whiteman

immediately said " your kids have mito " . One of the boys has a

confirmed partial complex 1 deficit (he has been much more affected),

the other does not. Dr. Whiteman believes they have a thiamine

reponsive form of PDH (incredible response to thiamine) - Cleveland

Clinic cannot test for the thiamine responsive form of PDH with the

fibroblast biopsy, so some day we will have to consider a muscle

biopsy for definitive diagnosis. My boys have absolutely no

tolerance for any stress---we literally do not leave the house

anymore (except to go to Mayo). As much as my kids have suffered Dr.

Whiteman continues to say that they are doing well for having mito

and that no other geneticist would believe they have Mito (that is

why the idiot Docs in this town did not consider it). We will be at

Mayo May 6 and 7 for MRI's if anyone would like to meet. Dr. Ranaud

wants to rule out " white matter " damage from a crisis in January.

One more thing-- my children get absolutely " crazy/insanewhen they

are in crisis--like they are on drugs--anybody else experience this?

Wishing everyone stability and peace,

Kris

Cole and Zack

[Guest guest]

Welcome back, Kris. I think I remember you posting last fall. My husband

and I have 2 1/2 year twins also with a Partial Complex I defect. Our girls

are affected the same and suffer from the same conditions (seizures, heat

intolerance, photosensitivity, hypotonia.) We also see Dr. Whiteman and

will be there this Thursday. I'm so glad you were able to see Dr. Whiteman

and finally get treatment for your boys. I know he has been a Godsend for

many on this list.

Kim - Mom to and Lindsey - Partial Complex I

Reintroducing ourselves...(Long)

> I first posted to this wonderful group last fall. I read this board

> everyday--I have learned so much and have the greatest respect for

> each and everyone of you. My twins are now 2 1/2 years old. One

> became ill at 20 months of age, the other at 22 months of age. Dr.

> Whiteman saved their lives. We live in Minneapolis--we spent 4

> months of precious time at several of the hospitals here with no

> answers-- we drove to Rochester out of desperation Dr. Whiteman

> immediately said " your kids have mito " . One of the boys has a

> confirmed partial complex 1 deficit (he has been much more affected),

> the other does not. Dr. Whiteman believes they have a thiamine

> reponsive form of PDH (incredible response to thiamine) - Cleveland

> Clinic cannot test for the thiamine responsive form of PDH with the

> fibroblast biopsy, so some day we will have to consider a muscle

> biopsy for definitive diagnosis. My boys have absolutely no

> tolerance for any stress---we literally do not leave the house

> anymore (except to go to Mayo). As much as my kids have suffered Dr.

> Whiteman continues to say that they are doing well for having mito

> and that no other geneticist would believe they have Mito (that is

> why the idiot Docs in this town did not consider it). We will be at

> Mayo May 6 and 7 for MRI's if anyone would like to meet. Dr. Ranaud

> wants to rule out " white matter " damage from a crisis in January.

> One more thing-- my children get absolutely " crazy/insanewhen they

> are in crisis--like they are on drugs--anybody else experience this?

>

> Wishing everyone stability and peace,

>

> Kris

> Cole and Zack

>

>

>

>

>

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

>

[Guest guest]

I missed the first posting. Was glad to see that Kim responded. I

live in Golden Valley and we have a 5 year old with Complex I. We

also see Dr. Whiteman. We also have twin daughters, age 3, who are

not affected. If you would like to meet e-mail me at

GAZECC@...

Geri-Anne and Wyatt, Complex I

> Welcome back, Kris. I think I remember you posting last fall. My

husband

> and I have 2 1/2 year twins also with a Partial Complex I defect.

Our girls

> are affected the same and suffer from the same conditions

(seizures, heat

> intolerance, photosensitivity, hypotonia.) We also see Dr.

Whiteman and

> will be there this Thursday. I'm so glad you were able to see Dr.

Whiteman

> and finally get treatment for your boys. I know he has been a

Godsend for

> many on this list.

>

> Kim - Mom to and Lindsey - Partial Complex I

>

>

> Reintroducing ourselves...(Long)

>

>

> > I first posted to this wonderful group last fall. I read this

board

> > everyday--I have learned so much and have the greatest respect for

> > each and everyone of you. My twins are now 2 1/2 years old. One

> > became ill at 20 months of age, the other at 22 months of age.

Dr.

> > Whiteman saved their lives. We live in Minneapolis--we spent 4

> > months of precious time at several of the hospitals here with no

> > answers-- we drove to Rochester out of desperation Dr. Whiteman

> > immediately said " your kids have mito " . One of the boys has a

> > confirmed partial complex 1 deficit (he has been much more

affected),

> > the other does not. Dr. Whiteman believes they have a thiamine

> > reponsive form of PDH (incredible response to thiamine) -

Cleveland

> > Clinic cannot test for the thiamine responsive form of PDH with

the

> > fibroblast biopsy, so some day we will have to consider a muscle

> > biopsy for definitive diagnosis. My boys have absolutely no

> > tolerance for any stress---we literally do not leave the house

> > anymore (except to go to Mayo). As much as my kids have suffered

Dr.

> > Whiteman continues to say that they are doing well for having mito

> > and that no other geneticist would believe they have Mito (that is

> > why the idiot Docs in this town did not consider it). We will be

at

> > Mayo May 6 and 7 for MRI's if anyone would like to meet. Dr.

Ranaud

> > wants to rule out " white matter " damage from a crisis in January.

> > One more thing-- my children get absolutely " crazy/insanewhen

they

> > are in crisis--like they are on drugs--anybody else experience

this?

> >

> > Wishing everyone stability and peace,

> >

> > Kris

> > Cole and Zack

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >