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 *********************************************** Archives: http://community.lsoft.com/archives/LACTNET.html To reach list owners: [log in to unmask] Mail all list management commands to: [log in to unmask] COMMANDS: 1. To temporarily stop your subscription write in the body of an email: set lactnet nomail 2. 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