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Jenna (14) and Jesse (12) Kiel are siblings with MSUD. Many of you have read their history in earlier Newsletters. So now as we are heading into the teen years, I’ve been asked to update you on their life. Carl & I have four children in our family, the two oldest Adam and Sara do not have MSUD. They are now both in college, at Michigan Tech and the University of Michigan respectively. Jenna was the first baby in Michigan to be diagnosed by Newborn Screening, so she was treated for MSUD at 5 days of age. Jesse has been treated as of birth, as we had an amniocentesis done. I could not even imagine life for them when I first heard the news. But 14 years later, we are doing much better than I had anticipated in those early days.

Jenna started high school this fall. This is a big change, as our kids go to a small school near our house, and high school is a blending of 6 schools with a class of 200 kids. She has loved it so far! Jenna Living Well With MSUD drinks 20 ounces of formula throughout the day. She has formula before school, after school, and at night - so the diet is not really an issue at school. Her levels have been very low since school started. We did have a scare this summer. After a 2 week vacation, she started menstruation and her levels rose dramatically. She vomited twice, and we thought she was recovering at home, but her levels kept rising instead of falling. After a week, we checked into our metabolic clinic at Detroit Children’s Hospital and she went on IV fluids with saline, but never needed TPN. She was eating well, and we were back home in 4 days. I believe she was just completely run down, and then the hormones on top of everything else. This was her first hospitalization in 10 years - since she was in preschool.

Aside from MSUD, Jenna lives a normal teenage life. She loves to read, knit (she’s working on Christmas presents now), IM her friends on the computer, and she shares a weekly newspaper route with Jesse. People usually say they cannot believe she has MSUD. I spent parent teacher conferences at the high school educating her teachers about MSUD and Jenna. They were all surprised. Jenna does pretty well in school - she gets A’s in English and reading, but math and science... well, let’s just say they are not her favorites. Jenna will be taking Driver’s Training in the spring. We’ve already set parameters for driving - she must do more frequent DNPH tests and it must be clear for her to drive. She also wants to go to our church’s Youth Convention this summer in Arizona. So that will take a bit of planning for her diet and accountability.

Jesse is in 7th grade. He enjoys playing percussion in band, takes piano lessons and plays keyboard, and shares the newspaper route with Jenna. He recently bought a drum set and has now started a garage band with his friends. It’s a little noisy at our house during their practice!! Jesse is an excellent student, having been involved in Jenison’s Gifted & Talented learning program. He also was 4th runner up in the Regional Spelling Bee. He’s hoping this year will be his year to win. Jesse also drinks 20 oz of formula per day, but does not take it to school anymore. This is an agreement we made when the kids started middle school.

Both kids have spent a week at camp while in 6th grade. We coordinated the menu with the kitchen help, and it really worked out great! Jenna was voted "Best Camper" for being so responsible about her formula and diet.

I believe our biggest challenges right now are: weight gain and hormones. Both kids have put on more weight since hitting puberty. I think all the calories from the formula plus the calories from the food they are eating are just too much. I know this is a common problem in the MSUD population. We have been working with our dietitian to make changes in their formula to lower calorie intake. Also, for Jenna the problem of monthly hormone fluctuations have caused elevated levels. We have adjusted her diet (lowered her protein just before her period) to anticipate for that, and things have been much better the last few months.

I am not trying to over-simply life with MSUD. We have definitely been blessed that Jenna & Jesse’s defect allows them to eat more protein than many MSUD kids - they normally eat 10+ grams of protein per day. They also have been quite resilient to illness and high levels. We have had only 2 hospitalizations in the past 10 years. Until this summer, Jenna had not been in the hospital since she was 4 (over 10 years), and Jesse has had only 1 serious hospitalization which was 5 years ago. I believe life with MSUD has gotten easier past the toddler years. But I am like that rest of you. You always worry, you always wonder, and God gives you the grace and courage to allow them to live their lives. I think the hardest challenge for me as an MSUD parent is to let go. This requires a lot of training and educating of my children, and yet is SO rewarding when you see them making good decisions and choices on their own. Both kids want to go to college like their brother and sister. Oh boy... more letting go!

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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A Child's Life

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