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Propionic Acidemia

My name is Kerrie; I live in North Carolina with my husband Mitch. We have been married since December of 09. My family back home includes my mom, dad, brother, 3 sisters, grand parents, aunts, uncles, the works and guess what, I am the only PA in the family.

I was first diagnosed around 10 months old. I was more sickly as a child but as I grew older the attacks became less. Currently I am supposed to be taking 8 teaspoons of liquid carnitine a day. I can’t really take a full dose at all as it makes me ill still. I take about 1/8-1/4 cup of formula and am suppose to take 1/2 cup a day. I take 80mg of inderal for cardiomyopathy (I was diagnosed early teens with that). The doctors are not sure if it was PA related or not.

I have about 30 grams of protein a day (non complex protein). I do remember when I was little and got sick that sugary drinks would help me kick ketones easier. A little extra dose of carnitine and soda does the trick. Hospital visits were usually from me getting a bug, then getting dehydrated which would kick up an acidotic attack. As I got older visits got less and less.

Now that I am back east I have noticed that the tolerance to carnitine is worse and makes me very nauseated (Zofran-is my new best friend it kicks the nausea/vomiting with no side effects). Drinking formula requires patience in finding something to mix with it. (kool-aid fruit punch-in a blue container). Is the only way I found that works and masks it.


From the Spring 2011 OAA Newsletter

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