Adjusting Protein In An Adult With MSUD
- Details
A little over a year ago, in January, Jeff was just not
himself. He had limited energy, was not eating well,
and often appeared slightly agitated. We thought
that it was SAD (seasonal affected disorder) so we got
out the light bar and made sure he put all the lights
on when in a room. But this was not the cause. His
condition got worse so we took him to see Dr. Morton,
even though Jeff yelled at us for” kidnapping” him
from his job at McDonald’s. His blood leucine levels
were slightly elevated and the ratio of isoleucine and
valine was not normal. Also his tryptophan levels
were very low. This enzyme helps regulate mood.
We increased his Zoloft, gave him Melatonin, and
5-hydroxytryptophan (for a brief period). He also went
on a sick day regime. Dr. Morton helped us understand
that because Jeff is 41, his metabolism has slowed
and he needs less protein. Jeff has a variant form of
MSUD so he has always been able to handle more daily
natural protein. We had to look at his diet and start
limiting some of his snacks, many of which had 1 gm of
protein. The 2 toughest changes were French fries and
orange juice. A small serving of McDonald’s French
fries has 3 gm of protein so he now has 2 hash browns
at lunch plus a salad. Orange juice is high also so he
now drinks an orange/pineapple drink. We have been
using some gluten free products. After these changes,
we had his blood levels checked and his leucine level
was within normal range, much lower than it used
to be. Jeff is back to the fun guy he has always been.
He sleeps better due to the melatonin. We hope that
when he is in his 50’s this will not start again. We also
hope, as do all of the MSUD patients, that there will be
a cure by then or at least a drug that allows them to
consume more daily natural protein.