Glycogen storage disease | 12 | Tube type | |
Types I and III | | Nasogastric | 50 (20) |
| | Gastrostomy button | 40 (16) |
| | Gastrostomy tube | 10 (4) |
Organic acidemias | 11 | Regimen | |
Propionic acidemia (5) | | Overnight pump feeds | 38 (15) |
Methylmalonic acidemia (2) | | Overnight and daytime bolus | 53 (21) |
Glutaric aciduria type 1 (2) | | Daytime bolus feeds only | 5 (2) |
Isovaleric acidemia (2) | | 24 h continuous feeds | 5 (2) |
Long chain fatty acid oxidation disorders | 8 | Length of time on feeds | |
Very long-chain acyl-Coenzyme A dehydrogenase deficiency (4) | | 0–1 year | 25 (10) |
Long-chain 3-hydroxyacyl-Coenzyme A dehydrogenase deficiency (2) | | 1–3 years | 8 (3) |
Acyl carnitine translocase deficiency (1) | | 3–5 years | 38 (15) |
Undefined disorder (1) | | >5 years | 30 (12) |
Urea cycle disorders | 4 | Ethnicity | |
Citrullinaemia (3) | | Pakistan | 53 (21) |
Ornithine carbamoyl transferase deficiency (1) | | Caucasian | 38 (15) |
| | Indian | 8 (3) |
| | Afro-Caribbean | 3 (1) |
Lysosomal storage disease | 2 | Language | |
Sanfillipo syndrome (1) | | English | 78 (31) |
Hunter syndrome (1) | | Mirpuri | 13 (5) |
| | Urdu | 8 (3) |
| | Punjabi | 3 (1) |
Others | 3 | Interviewee | |
Galactosaemia (1) | | Mother | 85 (34) |
Tyrosinaemia (1) | | Both parents | 13 (5) |
Lysinuric protein intolerance (1) | | Father | 3 (1) |