Hi Martina,

Sorry about the long post.  This is the information I've been able to come
up with.  None of it relates to breastfeeding.  However, there are links to
articles, peer support groups, medical & scientist groups and some basic and
not so basic information.  I hope it helps.

I'm sure this family will appreciate any support you give them.

regards
Suzie Heaton
Australia

There are three types of PCD, with different expected outcomes from each.
http://www.emedicine.com/ped/TOPIC1967.HTM

PCD is a mitochondrial disease.  Many patients with mitochondrial disease
may have elevated lactic acid levels (serum or cerebrospinal fluid).  Levels
can be high as a base line or may only be higher when sick or stressed or in
metabolic crisis.  From what I can find, have read and have heard discussed
there is no general talk in metabolic/mitochondrial circles of removing
lactose to reduce lactic acid.  However, I have not spoken with anyone
dealing with PCD specifically.  Another mum I have spoken to said that in 7
years of being involved in discussions involving metabolic diseases,
mitochondrial diseases & lactic acidosis she has never heard mention of
removing lactose to reduce the lactic acid levels.  She does know people
with children with PCD specifically.

http://biochemgen.ucsd.edu/mmdc/ep-15-16.pdf
The Role of Nutrition in Mitochondrial & Metabolic Diseases Jennifer Gwynne
RD CNSD

Mitochondrial Medicine Society
http://www.mitosoc.org/
Mitochondria Research Society
http://www.mitoresearch.org/index.html

Physician's Guide to the Treatment and Follow-up of Metabolic Diseases
Chapter - Disorders of Carbohydrate and Glycogen Metabolism
p162
"Fructose-1,6-diphosephatase deficiency and pyruvate carboxylase deficiency
are disorders of gluconeogenesis..... Pyruvate carboxylase deficiency
presents in the first months of life with mild lactic acidemia and delayed
psychomotor development.  A subgroup of patients with pyruvate carboxylase
deficiency present shortly after birth with severe lactic acidemia  and die
before the age of 3 months."
Chapter - Emergency Management
p5
Lactic acidosis
"In the case of primary lactic acidosis, cause by pyruvate carboxylase
deficiency, pyruvate dehydrogenase deficiency, or mitochondrial respiratory
chain defects, treat acidosis by administration of sodium bicarbonate,
giving an amount sufficient to maintain the plasma bicarbonate >20mmol/l.
The hypernatremia caused by the large amounts of sodium bicarbonate...."

I've found the following book interesting for other metabolic issues.
Unfortunately, I've reached my viewing limit for this book in google books.
You may find something though since it's mentioned on 15 pages.
A Clinical Guide to Inherited Metabolic Diseases

http://www.emedicine.com/ped/TOPIC1967.HTM
"Diet
  a.. Diet has a small effect on outcome.
  b.. A high-carbohydrate, high-protein diet may help to maintain an
anabolic state and prevent activation of gluconeogenesis"

http://biochemgen.ucsd.edu/mmdc/ep-3-10.pdf
"The Spectrum of Mitochondrial Disease
Robert Naviaux, MD, PhD
This has only a brief mention of PCD but does note in table 2 that it falls
into the "many genetic and acquired disorders that can result in primary or
secondary disturbances of mitochondrial function."
This was picked up from
http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042207/k.C54C/Symptoms_of_Mitochondrial_Cytopathies.htm
see link: in first paragraph
Robert Naviaux's "Overview, the Spectrum of Mitochondrial Disease" in the
Mitochondrial and Metabolic Disorders, Primary Care Physician's Guide,
second edition)
http://biochemgen.ucsd.edu/mmdc/ep-toc.htm

http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_mitochondrial_disease.aspx
The doctors mentioned at the bottom of this are very well known US doctors
for treating mitochondrial disease.  They may consult with doctors out side
of the US.

Mitochondrial Disease support groups can be found at
http://www.umdf.org/ and
www.mitoaction.org
There are also some yahoogroup email support groups for mitochondrial
disease and also specifically for PCD.

http://www.merck.com/mmpe/sec19/ch296/ch296d.html
part way down the page
"Pyruvate carboxylase deficiency: Pyruvate carboxylase is an enzyme
important for gluconeogenesis from pyruvate and alanine generated in muscle.
Deficiency may be primary, or secondary to deficiency of holocarboxylase
synthetase, biotin, or biotinidase; inheritance for both is autosomal
recessive and both result in lactic acidosis.
Primary deficiency incidence is < 1/250,000 births but may be higher in
certain American Indian populations. Psychomotor retardation with seizures
and spasticity are the major clinical manifestations. Laboratory
abnormalities include hyperammonemia; lactic acidosis; ketoacidosis;
elevated levels of plasma lysine, citrulline, alanine, and proline; and
increased excretion of ?-ketoglutarate. Diagnosis is confirmed by enzyme
analysis of cultured skin fibroblasts.

Secondary deficiency is clinically similar, with failure to thrive,
seizures, and other organic aciduria.

There is no effective treatment, but selected patients with primary
deficiency and all those with secondary deficiencies should be given biotin
supplementation 5 to 20 mg po once/day."

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pyruvate+Carboxylase+Deficiency

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