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Tyler -MMA, Cbl A



MMA, Cbl A

My name is Tyler. I am 23 years young.  I was diagnosed with Methylmalonic Acidemia Cbl-A when I was 6 months old, after I had become very sick and fell into a coma. The coma only lasted a few days, and after a few rough patches of being sick, I am one of healthiest people I know. I am currently a junior at Portland State University. I take 2 classes/8 credit hours this spring term. I also work 21 hours (3, 7 hour days) a week at a retail store.

I am currently on low protein diet, though I do have some problems getting enough protein my dietitian recommends. When I was young, my parents made me special formula that I drank (2 or 3 times a day) to get my protein fill. I hated the formula and it was a chore to get me to drink it. I finally gave up on the formula after high school.

After high school, my mom suggested I drink carnation instant breakfast to replace the formula. I hated the instant breakfast and that maybe lasted 6 months or a year, off and on. After the carnation instant breakfast run, I just decided to eat more cheese pizza to keep up the protein intake.  Up until a few months ago, the only high protein food I would eat on a regular basis (3 or 4 times a week) was the cheese pizza. My mom found this tasteless protein powder that you mix into some type of juice (I use no pulp orange juice). That has worked very well so far and it has been way better than the carnation instant breakfast and the formula. I drink it about 5 times a week in the mornings (when I have either work or school that day). I usually drink most of it, but the liquid does get a little chunky during the last ¼ of it.

I am very very picky eater. For meals, I usually eat french fries and hamburger buns or cheese pizza. I like different types of snacks, popcorn, cereals, cookies, vanilla ice cream, Popsicle, snow cone, and that’s all I can come up with off the top of my head.

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From the Spring 2011 OAA Newsletter



MMA, Cbl A

My name is Tyler. I am 21 years old. I was born and still live in Hillsboro, Oregon with my Mom, Dad and 15 year old brother Mark. I was diagnosed with Methylmalonic Acidemia CblA at 6 months old, after my first crisis while I was in a coma by Dr. Buist.  After I came out of coma and my family was able to take me home. During ages 1-4, I sometimes became very sick, some of those times I had to go to the hospital. I didn’t grow as fast as the other kids. I also didn’t eat very much as a kid, so from about 7 months to 4 years old, I had to be on an NG feeding tube just to get the minimum amount of food to survive, because I just refused to eat. I also developed some speech problems. My parents took me every week up to the OHSU to get help for me for my speech and eating problems, so I would be able to attend elementary school. I got off the feeding tube around 4 years old. I learned to drink my formula in a sippy cup, but it would take me at least an hour to drink 4 ounces.

In elementary school, I was still the smallest and shortest kid in my class. I would sometimes leave class to go to lower level classes in the school with other teachers. I played baseball from kindergarten until fourth grade. In 5th grade I finally got to 50 pounds and had a big party to celebrate. When I got into Jr. High my height started to level out. I was not the shortest in my class anymore. At the beginning of Jr. High I started at about 4’11 and was 5’2 at the end of Jr. High. In the 8th grade I started to get back into sports. I joined the wrestling team during the winter and at the end of the season had about a .500 record. I wrestled at about 90 lbs. In the summer I started tennis and competed in a team tennis tournament. In high school joined the wrestling team and tennis team. I lettered all 4 years in wrestling and 3 years in tennis. I did notice that during sports I would get more fatigued faster than my teammates and opponents.

Toward the end of high school, I replaced my formula drink with a vanilla carnation instant breakfast everyday. I am still a very picky eater and have a very limited menu. I never eat meat, but I eat a lot of French fries and bread. I like mostly salty foods and dip my food in different condiments. I take 6 pills of Carnitor and give myself 3 shots a week of Hydroxycobalamin for my MMA. I am currently attending Portland Community college and in about a year or so, I am planning to transfer to Portland State University. Since I had an IEP, I am able to get extra help in college like a note taker and extra time on tests. Because of fatigue, memory and learning issues, I only take 2 classes a term, so it will take me longer to get through college.

Janet (Mother)

From the Summer 2008 OAA Newsletter

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