The Oldstads sent this history in April '97 along with a newspaper clipping of an article describing Krista's care and the way it has affected her family. The article included a large color photo of the family - Todd, Carlene, and their two children, Trevor and Krista. It is encouraging to see the media publicizing MSUD.
We had a daughter, Jessica, who passed away twelve years ago. The doctors had discovered that her diaper smelled sweet - that's how they found out that Jessica had MSUD. But the doctors were unable to figure out what was wrong soon enough to treat her. For this reason our pediatrician, Dr. Bilgi was aware of what to look for when our daughter Krista was born.
Krista Olstad was born at Mercy Hospital in Des Moines, Iowa on January 29, 1996. It was a normal birth - everything went quickly for us. As soon as Krista was born, they started their testing. The day we were to be discharged, Dr. Bilgi called and said one of Jessica's diapers had a sweet odor to it. We put Krista into the ICU at the hospital and started the treatment for MSUD. The following day we got some test results back which indicated MSUD. We transferred Krista to the University of Iowa Hospitals. There Krista was put in the hands of Dr. William Rhead, Judy Miller, and Cheryl Stimsom.
Carlene went with Krista that night. I stayed home to take care of our son, Trevor, and to explain to him what was going on with his sister. Trevor, who is six years old, doesn't have MSUD. He stayed with friends for a few days. We were about two hours away from home.
The next day Carlene and I met with our doctors and others who told us that Krista has MSUD. During the next few days we were told a lot more about the disease. Krista was in intermediate ICU. We both were very nervous the first few days because it's a very big hospital, and we were hoping that Krista wouldn't get worse. Our doctors were great in keeping us informed about her progress.
Everyone was very helpful the whole time we spent there. The nurses in that ICU let Carlene and me help do things so that we could stay busy. Krista was on an IV and also bottle feeding. At times she didn't want anything to do with her bottle.
They had to put an NG tube in Krista and feed her that way most of the time. Carlene and I were able to help feed her and we were also taught how to change her tube which was sometimes hard to do. Judy Miller showed us how to do this and how to check the ketone level in her urine. We put cotton balls in her diaper and then put the wet cotton in a syringe to squeeze out the urine to collect it for the test. (Great idea!)
Cheryl Stimsom showed us how to mix Krista's formula. The first few days at home we had problems with this, but we called Cheryl and Judy about it. They helped us. I had started to mix the formula and did it wrong. Now Carlene mixes it every day. It is better to have one person do the mixing, but I know how in case I have to.
Judy had to teach us how to do heel sticks - we are using Krista's toes now. That blood goes to New York. When we have blood drawn at our hospital, it goes to Utah. It used to go to the University of Iowa. They had to close the lab there which really worried us. They had done our tests right away for us, so we were always getting a quick turn around on results.
Krista was at the University of Iowa hospital for ten days. We were nervous about taking her home. But she has been hospitalized only once in her first year. That was for one week. Krista had a cold and ear infection. Dr. Bilgi had seen her a day before she went into the hospital. We thought the medication she was on hadn't taken effect yet. Krista was sleepy and whining that day. When I checked her ketones that night, her levels were real high. We called Dr. Bilgi right away and he told us to take Krista to the hospital immediately.
She was admitted, started on an IV, and taken off her formula. After a couple of days, she got back on formula. After a few more days, her levels starting coming down. We got real scared when her ketones got that high. We had never had anything but a negative reading on her Keto Stixs.
Krista has been easy to manage with her MSUD. She started walking at about ten months. She is real good in nature - always happy and loves to play with her toys. Krista also loves to give hugs to people and play with her brother and other kids.
Lots of family and friends helped us out when we were at University of Iowa Hospitals. We see Dr. Rhead, Judy Miller, and Cheryl Stimsom at least once a month at the Children's Clinic at University of Iowa, and see Dr. Bilgi when Krista needs a checkup. All these people have made it easy for Carlene and me to keep Krista healthy. We think the world of them for being so caring.
Update: December 1997
Since we sent the history in April, Krista has been in the hospital twice, the last time being the week before Thanksgiving. Both times she had a flu which sent her ketones up. Her three amino acid levels went up a little, too. So we put her in the local hospital on an IV for her dehydration, but each time it was only for a week.
Krista has been really doing well. Her weight is about 25 pounds and height is about 31 inches. Sometimes she doesn't want to eat certain things, like her peas, green beans and some other vegetables. But Krista loves corn, bananas and popsicles. We got some low protein recipe books, so we're able to start making more foods for her. Krista's formula is a mixture of Ketonex and Isoleucine and a little 2% milk. My wife sometimes makes some of it into a paste which Krista takes along with water and other fluids.
We do checkups at the University of Iowa every couple months now. They say Krista is doing really well. She is doing what every 21 month old is doing. She is learning a few new words every day with the help of her older brother who is eight.
We take Krista to a local lab to have blood drawn every four weeks to test her three amino acid levels. This blood is sent to a lab in Texas. In the weeks between those draws, we draw blood at home using filter paper and send it to New York to check her leucine level. This all helps us regulate Krista's Diet.
Krista does well in playing with other children at day care. We have a very good day care. They have had Krista since birth and really watch her. If they sense something is wrong, they call one of us right away. We have a lot of good people that take good care of Krista.