Make Sodium Benzoate Available in IV form
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My 3 month old son was diagnosed with glycine encephalopathy. A disease that causes a toxic buildup of the amino acid glycine. This toxic buildup causes a plethora of problems. My son, for example, is comatose without the use of a certain medication called Sodium Benzoate. Unfortunately, this medication is also extremely caustic on the stomach to the point where I am writing this petition from the PICU at UCLA Mattel Childrens Hospital where my son has been vomiting blood and is now comatose because he cannot get Sodium Benzoate in IV form and cannot currently tolerate it by mouth.
Most of these children do not make it past childhood and our main goal as parents is to give them the best life possible in their short years here. Sodium benzoate in IV form would go a long way for that hope for our children.
This medication is also used for Urea Cycle Disorders. It's availability in IV form would be of great help to both people with glycine encephalopathy and urea cycle disorders.
We are aware of the medication Ammunol that has sodium benzoate in it but it also has phenylacetate, which kids with glycine encephalopathy do not need. This is currently the only way to get SB in IV. We are petitioning them to make SB in IV form without phenylacetate.
Baxter Pharmaceuticals is able to produce this medication in IV form and we would like to show them there is a need for it through this petition. Thank you!
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