Mitochondrial disorders..caution

[Guest guest]

Mitochondrial disorders vary greatly in their presentation and management.

For evry part of the enzyme chain of energy production in the mitochondria

(the :power house " of each cell) there are different symptoms, and very

different ways of dealing with it.

Often, very little in the way of treatment can help, other than just

treating symptoms, but diets such as the keto diet are restricted to just a

few of the identified mito dosorders.

Mito disorders are often considered when there are 3 or more 'organs'

involved in an illness and/or the presentation of the illness/disorder is

not 'classical' of previuos cases.

Diagnosis is often difficult (sometimes if at all)

Epliepsy is certainly a common factor with many mito's..but some children

are worse with high fat diets..

My advice is be careful..don't assume anything..and certainly be careful

with any supplements in a child undiagnosed and suspected of a mitochondrial

disorder! Seek advice from some one who knows

ne, mum to Gaby aged 8 years, Mito disorder (PDH) which does respond to

the keto diet in " some children only " !

[Guest guest]

ne,

My 5month old daughter was " presumed " to have PDH as well. She began treatment

with a keto diet at 3 days old. Since then, her seizures have increased and

after 3 1/2 months waiting for the skin biopsy results we found they came back

negative for PDH. Therapeutically, however, she is responding as if she had PDH,

thiamine responsive.Now we are waiting to have a muscle biopsy performed. We are

still waiting for additional test results to come back from the skin biopsy. How

is Gaby doing? What has been your history with her? Was she diagnosed early? I'm

sorry if I am being intrusive, but I am at a loss with what to do for my

daughter.

Mitochondrial disorders..caution

Mitochondrial disorders vary greatly in their presentation and management.

For evry part of the enzyme chain of energy production in the mitochondria

(the :power house " of each cell) there are different symptoms, and very

different ways of dealing with it.

Often, very little in the way of treatment can help, other than just

treating symptoms, but diets such as the keto diet are restricted to just a

few of the identified mito dosorders.

Mito disorders are often considered when there are 3 or more 'organs'

involved in an illness and/or the presentation of the illness/disorder is

not 'classical' of previuos cases.

Diagnosis is often difficult (sometimes if at all)

Epliepsy is certainly a common factor with many mito's..but some children

are worse with high fat diets..

My advice is be careful..don't assume anything..and certainly be careful

with any supplements in a child undiagnosed and suspected of a mitochondrial

disorder! Seek advice from some one who knows

ne, mum to Gaby aged 8 years, Mito disorder (PDH) which does respond to

the keto diet in " some children only " !

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

ne,

My 5month old daughter was " presumed " to have PDH as well. She began treatment

with a keto diet at 3 days old. Since then, her seizures have increased and

after 3 1/2 months waiting for the skin biopsy results we found they came back

negative for PDH. Therapeutically, however, she is responding as if she had PDH,

thiamine responsive.Now we are waiting to have a muscle biopsy performed. We are

still waiting for additional test results to come back from the skin biopsy. How

is Gaby doing? What has been your history with her? Was she diagnosed early? I'm

sorry if I am being intrusive, but I am at a loss with what to do for my

daughter.

Mitochondrial disorders..caution

Mitochondrial disorders vary greatly in their presentation and management.

For evry part of the enzyme chain of energy production in the mitochondria

(the :power house " of each cell) there are different symptoms, and very

different ways of dealing with it.

Often, very little in the way of treatment can help, other than just

treating symptoms, but diets such as the keto diet are restricted to just a

few of the identified mito dosorders.

Mito disorders are often considered when there are 3 or more 'organs'

involved in an illness and/or the presentation of the illness/disorder is

not 'classical' of previuos cases.

Diagnosis is often difficult (sometimes if at all)

Epliepsy is certainly a common factor with many mito's..but some children

are worse with high fat diets..

My advice is be careful..don't assume anything..and certainly be careful

with any supplements in a child undiagnosed and suspected of a mitochondrial

disorder! Seek advice from some one who knows

ne, mum to Gaby aged 8 years, Mito disorder (PDH) which does respond to

the keto diet in " some children only " !

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe