Hi Cindy, thankyou for your message it will be brilliant once it has been approved and we have it in the UK as we struggled a lot when my son had to take phenylbutyrate. Willt he dosage of the new medicine be a lot less than the phenylbutyrate/sodium benzoate or about the same? my son ahs also had a feeding aversion probably due to the horrible taste of the medicines so yes i totally agree about it being a breakthrough if it resolves all the problems of administering the medicines. please keep us updated of the progress. the idea of all these medicines increasing always makes me think about the quality of loife patients have and whther it would be better to opt for transplantation. ps i was wondering if anyone has been through PGD or knows of anyone who has been through PGD to test for urea cycle disorders and avoid having an affected pregnancy?
Hi Nadia, The dosage of sodium phenylbutyrate increases with weight. The dose is based on mg/kg per day of body weight, so as one increases in weight,the dosage increases. Once the individual gets to ... more