Spring 2000 Articles

Letter From The Officers
"La Vida Loca"???
Clinic Corner
Think Summer, Camping, Activities, and MPKU Programs
1999 Raffle
NIH Consensus Conference
Teaching Kids How To Keep Track Of Phe's

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Letter From The Officers It is a new year and with that comes the time to begin planning for what the PKU Organization of Illinois will be doing during the year 2000.

We are looking forward to continuing to provide opportunities for members of our “family” to gather and exchange information and to try and keep you up to date with new products and happenings in the PKU world.

We had a great annual meeting in 1999 and will try to provide another interesting one this year. Along with that we will have other events which are beginning to shape up. A preliminary calendar of events for 2000 is included in this issue of the press. We will notify you of updates to the calendar as the year progresses through special mailings, press articles, and on our internet site - www.pkuil.org .

We want to acknowledge two particular 1999 board members that are not on the board this year for their many contributions toward making this organization successful:

J. C. had been a board member for 6 years, 5 of which were in officer positions. She served as President in 1998 and 1999. Everyone that knows her realizes that this will be a difficult void to fill. Her dedication, energy level, ideas, and persistence will be dearly missed.

D. P. served as Vice-President in 1998 and 1999. She was very focused on fundraising, had many ideas for new events and approaches to things, and spent countless hours performing activities in support of the organization.

We also want to welcome the new members of the 2000 board. 

As a final note, we are looking for members that are willing to help out with small, but very important items to keep the organization running. These are things such as helping to host an event, helping with special mailings, making event fliers, writing an article for this newsletter, or volunteering time to other items that need to be done.

We hope you have a great year and look forward to seeing you at some of our events.

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"La Vida Loca"???

Well, not exactly, but probably the closest that a couple with four young children (one with PKU), and a calendar that can only claim two to three "open dates" in a given month could ever come! So it was, our trip to Rincon, Puerto Rico. My husband and I were the lucky recipients of the Grand Prize for the 1998 annual drawing. I say recipients because we didn't actually win the prize; dear Aunt Hilde did, but she generously gifted us with the prize, so we enjoyed seven nights and eight days in paradise this past November.

Of course we had the usual preparations that come along with leaving children behind, and they were complicated a bit by the fact that our son, five years old, has PKU. But after everyone was comfortably settled with family, we were off to the Islands! 

From the moment we set foot on Puerto Rican turf, we were met with the utmost hospitality. Our hosts are the grandparents of a wonderful girl in Illinois that has PKU.  They really know how to make people feel welcome. From the accommodations at their hotel, the Villa Cofresí Hotel , to the food, from the beautiful beach, to the helpful hotel staff, our stay was just perfect. We enjoyed platanos, beautiful sunsets at the cabana with Piratas (the house specialty) in hand, Caribbean music, wild ponies on the side of the road, local artisans, live surfers, etc., etc., etc. Not to mention the most interesting people! We also enjoyed not mixing up "Supermilk" for one solid week!

I can think of only one thing more exciting than spending seven days away from it all on a beautiful island........and that is our children's faces when we returned! Hmmmmm, I wonder if the rules state that you can only win once in a lifetime!!!

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Clinic Corner

The families that attend clinic at this location may remember her. During her internship she got a whirlwind tour of different nutritional areas of the hospital. These were dietitian in all parts of the hospital, outpatient, food service, and public relations. She met Dr. Hoganson during this internship.

She was planning to move to Chicago, and heard about an opening at U of I for Metabolic Nutrition and general pediatric. Well, the rest is history. She also plans to continue her education at the U of I.

VANESSA, WELCOME TO THE ILLINOIS PKU FAMILY.

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The PKU Clinic staffs have tried to maintain information on what is being developed for summer camps – including those focused on Maternal PKU. At the time of this press our information is as follows:

Madison, Wisconsin: July 27-30, 2000

The PKU Clinic staff is planning an extended weekend for young women ages 12-16.

A number of young women from Illinois have attended in previous years; all have reported having a great time. Contact: Sandy van Calcar, MS, RD, 608-263-5981.

This is a week long camp for women ages 10 years and older. Linda Gleason, RD, University of Illinois PKU Clinic has served on their staff and could provide first Hand information. Contact: Rani Singh, PH.D, Director of Nutrition: 404-727-3089.

has held a co-ed camp for ages 8-18 in late August at the South shore YMCA Camp on Cape Cod. This PKU Camp is integrated into the Y Camp program. Both children with PKU and siblings can attend. In 1999

For further details contact # in Boston: 617-355-7346

The Illinois PKU Clinic staffs receive mailings about these programs as they are developed but often the lead-time does not permit mailings. If you are interested in one of these camps, please call the contact person listed for an application. Grace Herron [312-996-7202] or Hazel Vespa [773-880-4486] Social Workers, Illinois PKU Clinics, may be able to provide additional information and/or scholarship help if you are interested in pursuing these out-of-state summer programs or other camps you have located on your own.

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1999 Raffle 

The 1999 annual meeting raffle was a great success. Thanks to all who bought and/or sold raffle tickets for this annual event. We were able to raise over $6500 for the PKU Organization of Illinois. The B. R. family was the Grand Prize winner (and envy of all in attendance) of a 1 week stay at Villa Cofresí Hotel in Rincon, Puerto Rico which included a $1000 travel certificate for airfare. The Mayor of Rincon has promised that the trip is one to remember for a lifetime.

There were over 22 unique prizes which included tickets to every Chicago professional team sporting event as well as many other Chicagoland attractions.

We want to acknowledge the top sellers of raffle tickets. The F. family sold an amazing $930 worth of tickets. This was followed by the H. family at $448 and the S. family at $266. These 3 families accounted for a large percentage of the overall sales.

Keep an eye out for the prizes for the 2000 raffle. 

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2000 NIH Public Conference on the Screening and Management of PKU Scheduled for October

On October 16 - 18, 2000, the National Institute of Health will hold a free public consensus development conference on the Screening and Management of  PKU. At the conference, PKU experts will speak and lead a public discussion on PKU epidemiology (the study of what factors are associated with PKU) and genetics, screening strategies and treatment regimens. An independent panel will evaluate the scientific evidence and draft a statement on the following topics: 

1. The incidence and prevalence of PKU and other forms of hyperphenylalaninemias, and their genetic and clinical variability.
2. The newborn screening strategies available for diagnosis, their effectiveness and any cost-savings generated by screening and treatment. 
3. The treatment regimens used to prevent the adverse effects of PKU, their effectiveness overall and as to factors like when dietary management begins and phenylalanine levels at different ages, ways to enhance diet compliance, duration of dietary management, and dietary regimens for adults, including women in the child-bearing years. 
4. Based on known information, identifying the recommended strategies for optimal newborn screening and diagnosis and lifelong management and follow-up of PKU. 
5. Identifying research needed to gather information to optimize the outcome for individuals with PKU and their families. 

The panel will present its statement on the final day of the conference.

If you are interested in attending, you can register through the NIH website for this event.  If you cannot attend, you request a copy of the draft panel statement by forwarding your complete mailing address to pkustatementonly@prospectassoc.com or calling 1-888-NIH-CONSENSUS. 

THIS PROMISES TO BE A HOT TICKET!!! REGISTER EARLY TO RESERVE YOUR SPOT AT THE CONFERENCE.

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TEACHING KIDS HOW TO KEEP TRACK OF PHE'S

This diet self-management workshop was led by Linda Gleason, MS RD and Rhoda Papanastassiou, MS RD.

Parents were introduced to the concept of teaching kids how to keep track of phes. We found out that keeping track of phenylalanine on a day to day basis was a stumbling block for many families and not keeping track at all can result in high blood phe levels. As a child gets older there can be less parental supervision regarding foods chosen to eat and as a result phe levels can increase unless the child has the knowledge to make wise food choices or has the skill to keep track of phes.

Chris Trahms, MSRD a dietitian from the University of Washington Health Sciences center has written numerous articles on teaching kids how to manage their diet. She recommends that at age 2-3 yrs. the child learns "yes" and "no" foods. At age three or four the child learns to "count foods", for example the number of french fries eaten or "how many". " How much food is allowed" involves measuring out food portions with a measuring cup or on a scale and understanding the phe content of a given food.

Three different methods for helping kids learn to track their phe's were demonstrated.

1. A food diary: One teenager who attended the workshop said she has a notebook to keep track of her phe intake each day. She said that this is "her responsibility". This child understands that everyday is important. Parents need to model this "record keeping" everyday so the child understands that record and keeping track of phe daily is important.
2. " The Keeping Track of Phe Tree" , 1999,Gleason and Papanastassiou: A magnet strip is cut out in the shape of a tree and small leaves. Each leaf magnet represents 15 mg of phe and equals one exchange. Each day the child starts out with all the leaves on the branches of the tree. After each 15 mgs of phe has been eaten, remove a leaf from the tree. This tool shows the child graphically the idea of " using up your phe". It will also help teach how different foods contain different amounts of phe.
3. A Phe Clock/Dial: The " Phe Clock" uses a spinner that goes around the clock to tell how many phes have been eaten. The clock was designed by a parent to help the child learn how to keep track of phes eaten from the time they wake up until bedtime. The clock starts at breakfast and goes around by 15 mg phe increments until the total prescribed amount of phes have been consumed by bedtime. Breakfast usually contains 45 mgs phe. The child's lunch is made the night before containing a known amount of phes. By afternoon, 200 mgs of phe have been eaten. After school, the child moves the phe hand to the number of mgs of phe that have been consumed so far. This will determine the amount of phes left for dinner and a snack.

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Last modified: June 30, 2000