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The PKU Organization of Illinois received some public exposure during the Pro-Am of the Motorola Western Open Golf Tournament in July. Thanks to the efforts and generosity of Jim, our organization's logo was prominently displayed on his custom made golf bag. J.C., an avid golfer, was grouped with golf pro John Elliot from Florida and 3 other amateurs. In addition to the golf bag, the PKU Organization's name showed up on beautiful lady's straw hats and baseball caps. |
The event served as an informative tool to once again spread the work about PKU. Many people stopped to ask Jim and his supporters what PKU meant. J.C. was accompanied by his family (his daughter has PKU) who were there to cheer him on. It was an amazing day of golf! He not only helped spread the word about PKU, but he played well too, placing in the Top 10 for this event. Congratulations and Thank You J.C.!
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| Earlier this year, Dr. Barbara Burton assumed responsibility for the PKU Clinic at Children's Memorial Hospital. She, like her predecessor Dr. O'Flynn, is a very accomplished physician who has dedicated her practice to pediatrics and genetics. Since many of you will not meet her until our 30th Annual Meeting, we want to give you a short introduction to Dr. Burton, as she begins leading the Children's clinic into the new Millennium. |  |
Dr. Burton was born in Minneapolis, Minnesota. She became interested in a medical career and the sciences because of the encouragement of one of her science teachers. After finishing her medical studies, Dr. Burton settled in North Carolina. She immediately became involved in pediatric medical issues and received grants for regional screening programs for neural tube defects, for the prevention of fetal alcohol syndrome, for genetic counselling, for the study of inborn errors of metabolism, to develop new screening programs for Downs Syndrome, etc. In addition to her work on these grants, Dr. Burton has served on a number of national committees devoted to genetic research and state committees related to newborn screening to detect and treat birth defects. In the late 1980's, Dr. Burton returned to the midwest (we aren't sure if she returned for the blustery winters or the blistering summers), where she continued to work on genetic issues in her pediatric practice.
Over the years, Dr. Burton has held a number of teaching positions. She currently is a professor of pediatrics at Northwestern University Medical School. Before assuming her responsibilities at Children's, Dr. Burton was the Head of the Division of Genetics and Metabolism for the Department of Pediatrics at University of Illinois College of Medicine. Dr. Burton continues to serve as an attending physician at University of Illinois Hospital. Thus, she has a direct professional link with one of our other outstanding PKU clinics.
Dr. Burton also has worked with other leading educational and advocacy organizations. In particular, Dr. Burton is the chairperson for the Genetics and Youth Practice Education Program for Primary Care Physicians. Through these education efforts, Dr. Burton is increasing the knowledge base of the pediatricians who provide medical care to our children on a day-to-day basis. Dr. Burton is involved with the March of Dimes. As many of our members are aware, over the years, our organization has obtained literature from the March of Dimes to assist us with our educational outreach efforts.
Finally, Dr. Burton has published many articles and chapters of medical textbooks discussing inborn errors of metabolism, genetic counselling and screening, and the detection, prevention and treatment of genetic disorders. These topics always interest our members and we look forward to Dr. Burton's insights on them at our annual meetings and in the course of treating our children.
Dr. Burton, on behalf of our members, we welcome you and look forward to working with you in the years to come!
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Earlier this year I read a press release describing new developments in the ongoing research being performed by IBEX Technologies in Montreal, Quebec. The press release describes a report published in the March 2nd issue of the Proceedings of the National Academy of Sciences. Since the press release came to me via our Listserv, I decided to contact IBEX directly to get some more information. |
Dr. Robert Heft was very generous with his time and agreed that I could share our conversation with all of you. One of my first questions was what this new report really meant. Dr. Heft told me that while the report is very encouraging from a scientific point of view, IBEX Technologies is still a bit away from a clinical point of view. He explained that a breakthrough must come before "PAL" (phenylalanine ammonia lyase) could be proven to be an efficient and successful enzyme for reducing blood levels of phenylalanine. Dr. Heft went on to describe how the problem lies with the inefficiency of the active enzyme, PAL. PAL is not as efficient as a normal enzyme and this makes it very difficult to use PAL as the transport enzyme to replace the molecule missing in those with PKU.
Unfortunately, in order to obtain even close to desirable reductions in blood levels, PAL would have to be used in unrealistically high quantities. IBEX is working to try to find a different type of enzyme or other ways to change PAL at a molecular level to be more efficient in breaking down phenylalanine . Dr. Heft explained (in terms even I could understand!) that molecular engineering of this transport enzyme is very much a hit and miss proposition. Difficulty in molecular engineering and improving efficiency of PAL are further hampered by another factor - the pH levels of our gastrointestinal tracts. PAL works optimally at a pH level which is less than that found in the human intestinal tract. Therefore, the enzyme, which is already inefficient, becomes even less so once it enters our intestinal system.
Now there is good news. The ongoing work at IBEX shows that we should be able to theoretically reduce the levels of phenylalanine in the blood to a comfortable range once the issues associated with the transport enzyme, PAL, are resolved. This would mean that a person with PKU may be able to take a "PAL pill" and reduce the need for the strict low protein diet which is today's standard of treatment. Be patient - once these issues are resolved, clinical studies must follow. It could be several years or more before this product reaches us as a treatment for PKU.
When I asked Dr. Heft what we, as parents and as an Organization, could do to assist IBEX's efforts he replied that the funding of this project is not as limiting as the science. While the addition of another scientist might result in a quicker result, he feels that there is an appropriate concentration of scientists and researchers working on this project at this time. I promised Dr. Heft that we would continue to keep our fingers crossed and will monitor IBEX's progress. My thanks to Dr. Heft and IBEX Technologies for taking the time to keep us informed about their work.
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| It wasn't pretty. It was raining, cold and barely 70 degrees. But, it was, Sunday, June 13th and the Northern Illinois Picnic must go on! The Board's planning paid off as the Bolingbrook Aquatic Center which has been the location of the summer picnic for the last 3 years also has a large indoor pool. As our first guests started to arrive the pool's lifeguards closed the outdoor pool - not because of storms but because it was too cold! We greeted our guests with a brief hello then asked them to help us move everything indoors. |  |
Once indoors, we were able to set up in a large area of the pool deck. The kids ran off to play, frolic under the waterfalls and go down the big slide - over and over and over again! Some parents joined in the water fun while others hung out, caught up with old friends and made some new ones (near the food table of course!). Speaking of the food table, we had an eclectic assortment of low protein foods for our PKU attendees to sample. Eclectic because the weather did keep some families away, but our kids did not notice. We had over 40 people show up on this inclement day! The low protein donut holes, salads, veggies, sandwiches and other goodies were gobbled up by our wet youngsters. A.K. brought low protein bars (a supplement to the special milk) for us to sample. Everyone who attended received a chance to win one of 2 basket assortments of low protein foods, cooking products and beanie babies.
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Papi's PerspectiveIt seems that it was only yesterday when summer began and now it's over. It's almost fall and the start of the countdown to the end of the Century. I could look back at the past, however, I think that it is more appropriate to look ahead to the future. Our lives pass us so quickly that we sometimes forget our purpose for being here. Let's review: |
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We are put on this Earth and we spend most of our lives, if not all, trying to discover who we are and why we are here. Some of us discover "it" sometime and many of us never do. Our life experiences teach us to be survivors, no matter the amount or degree of adversity. As we approach the new Millennium, I am put in a position to reflect upon my future - our future! For me it comes down to one word: FAMILY!
Like it or not, our lives revolve around family and believe me, I have not encountered a perfect one. Every family has its defects. Nonetheless, every family also has something in common: A great love for each other.
Dealing with the pressures of day to day life, however, we sometimes lose sight of this common bond. Today I am also thankful for having the opportunity to get to know another family - the PKU family. We have something very special in common: Our special kids, without whom many of us would have never met. Each one of us brings something special to the table and we all choose to get involved in our own way. To me, being involved means to share a little of my own experience and to gain a lot from other's experiences.
The New Century brings us the opportunity to reflect about our own lives and plan for our future. My future will definitely include more tolerance, patience and forgiveness. It will include trying harder to understand other's needs. It will include more phone calls and visits to friends. It will most importantly include FAMILY!
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Did you know if your medical expenses meet or exceed 7% of your annual income you can deduct the cost of equipment, supplies, medical bills, insurance payments, medically required foods, co-payments & out of pocket expenses, prescriptions & mileage relating to the medical condition? Tax filing assistance and advice is sometimes available at your local library or seek advice from a tax advisor.
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Most health insurance polices cover dependents until the age of 18 unless he/she is a full time student. If you have wondered what kind of financial impact this could be in the event he/she does not attend college you may want to seek advice from your financial advisor or local savings and trust bank. Today there are many different medical savings plans available whether it's age 18 or capability of employment that you fear. A medical savings account, medical trust, or a supplemental medical payments fund may be what would set your mind at ease. Each offer different advantages, for example if your loved one already collects disability, certain plans can affect his/her current income. Perhaps it's simply your loved one's ability to afford health coverage and/or medical foods later in life that has you up at night. |
A medical trust, can allow you to set money aside for only that purpose. Medical payments fund is generally set up when future medical expense is anticipated. Money is dispensed from the fund to pay for such expenses. We are lucky in Illinois that medical formula is provided without regard to age and to have legislation guarantee us coverage after one year for a pre-existing condition. But by preparing ourselves and our loved ones we can ease the financial burden of diet for life.
Contact your local community resource service through town hall or the social worker at your clinic for assistance in locating resources to assist you with your needs today. Social Security (check your local phone book for the office nearest) can offer disability income, if qualified. DSCC-Division of Specialized Care for Children (2815 W. Washington, Suite 300, P.O. Box 19481, Springfield, IL 62794-9481 or if in Chicago region contact UIC Medical Center) can offer equipment, supplies, medications, and physical, speech and occupational therapy. Including low protein foods. AnyDoc is an insurance like program via the State of IL for residents under the age of 18 providing medical coverage by financial qualification.
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How to Get Your Kid to Eat....But Not Too
Much by Ellyn Satter R.D., A.C.S.W.
Author of the best-selling Child of Mine: Feeding with
Love and Good Sense
| Ellyn received her Master's Degrees in Nutrition and in Social Work from the University of Wisconsin, and is a therapist in Madison Wisconsin, where she specializes in the treatment of eating disturbances and disorders in adults, children, and families. Though, neither book was written for PKU I found both directly relate, in that eating is such a large part of the individuals life and that of the family members. |  |
In discussing the basic principles of feeding she reveals an essential feeding philosophy for every stage of life in a simple, direct and responsible manner. A few messages I found enlightening and a few I enjoyed the a gentle reminder of the parental boundaries PKU sometimes can overshadow.
Eating and feeding is central to the very young child's relationship to the world. If they are hungry, they are miserable and feel alone. Hunger is a powerful and can be a painful drive. Whether a child learns to fear or accommodate hunger depends on their early experience with eating, which I did not know. And maintaining a positive feeding relationship demands a division of responsibility. The parent is responsible for what a child is offered to eat, the child is responsible for how much, and even whether they eat. Parents can either support or disrupt a child's food regulation.
Pressure doesn't work, it can make their eating worse, make them grow poorly, make them feel bad about themselves, their body, and their eating. Forcing can make you miserable. It can make meals and feeding miserable. No matter if it's to get the required formula in or if your child is like mine, to get enough Phe. It can make meals and feeding degenerate from a fun and satisfying process to a battle in which nobody wins. You can't predict how much children will eat. Children vary day to day, child to child. Feeding doesn't just happen. What you do with feeding can make a difference.
This book offers a lot of information that is helpful and methods that work. Children will eat, and they can be positive and joyous about it PKU diet or not.
Last few tips:
* choose age appropriate meals
* have regular meals and snacks
* take snacks seriously (I replace snacks many times with "milk")
* make eating worthwhile
* offer a variety
* try to have something on the table the child generally likes
* offer new items along with the old favorites
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Hunt's Lemon Pudding - K Mart , Walmart, & Cub Foods Stores
Wise Onion Rings (Wise Foods 800-438- 9473) Jewel, Kramers, and many local grocers can obtain this if they are carrying other Jay's product
Rich's Liquid Whipped Topping - Gorden Food Center (GFC), Cub Foods
What have you spied???
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Be on the lookout the next time you are in the cereal aisle. We were alerted on the PKU Listserv that some companies will be adding (or have already added) aspartame to breakfast cereals to enhance sweetness without adding extra calories. Because these cereals will also have sugar, they will not be labeled sugar free. We do not know the names of any cereals affected. We have also heard that Smuckers is going to begin or may have already begun lessening the sugar content in some of their jellies by adding aspartame.
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The PKU Organization of Illinois web site (www.pkuil.org) has been updated to include an on-line version of the PKU Press. Surf by the site, check it out, and let us know what you think. Your local library most likely offers free internet access. This is a way that you can take advantage of the PKU information on the internet if you do not own a computer or have access to one. If you have a computer and a modem, but do not want to pay a monthly charge for internet access, a few companies are beginning to offer "free" internet access and free e-mail, in selected areas of the state as a local phone call. Call the organization's voice mail and leave a message if you would like to discuss this possibility.
We average 100-150 people a week that visit our home page looking for information about PKU. The parts visited most often are Understanding PKU, Mission, Kidzone, PKU Press, and Calendar of Events. Since the web site went on-line in late 1998 we have had people from the following countries come to the site: USA, Australia, Canada, United Kingdom, Brazil, New Zealand, Sweden, Netherlands, Germany, Ireland, Mexico, Finland, Belgium, Norway, Israel, Iceland, Italy, Denmark, France, Colombia, Russian Federation, Moldavia, Taiwan, Greece, Czech Republic, Austria, Croatia, Costa Rica, Portugal, Great Britain, Argentina, Singapore, Slovak Republic, South Korea, Spain, Japan, and South Africa.
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