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This is the story of two brothers who were poorly controlled on the diet as children. As young teens, they were placed in foster care for several years, during which time the diet was poorly controlled or non-existent. Finally, their grandparents finally located them and took them into their home. With great determination, the grandparents returned the young men to the diet, with many positive results.
What has happened to us in the past year is nothing short of miraculous. Retired and in our 60's, we now have two young men with PKU in our lives again. They are our grandsons, Doug, age 19, and Jason, age 20. Due to their parents' divorce when they were just one and two years old, the boys were separated from us. Until that time, they had been staying in our home in rural Missouri. Their PKU was diagnosed at birth and they were on the diet right after the diagnosis.
After the divorce, although the parents had joint custody, their mother took them out of state, to Arizona. She remarried and the boys were taught to use their stepfather's name. We don't know the whole history of their early years. To our dismay and great sorrow, their mother dropped all contact with everyone in the family. We tried for years to locate the boys, but were not successful until several years ago. Then, through their grandfather living in Arizona, we finally located them. Since then, we had been in touch with the boys and had rebuilt a relationship. We discovered that the boys had been shunted from one home to another over the years. Apparently, they lived with anyone who would accept them. The state finally removed the boys from their home and placed them in foster care at the ages of 13 and 14, due to physical and mental abuse.
We don't know much about their diet history. We guess that no one paid much attention to their diet. We think that the foster parents tried to keep the boys on diet, but it is very unclear whether they had any contact with a clinic. When the boys were 16 and 17 years old, they were sent back to live with their mother. Then, we know they were not on the diet at all. So it is likely their PKU was poorly controlled from a young age.
When the boys finally arrived at our house last winter, they were in sorry shape. They seemed practically lifeless, dull and with a very flat affect. They had a variety of problems, both mental and physical. The problems are undoubtedly due both to their poor diet control and to the difficult circumstances of their early years. It was heartbreaking for us. But we had already contacted the PKU clinic and had everything set up so they could go back on the diet the moment they arrived at our house.
Within a very short time, both boys were completely on the diet. They accepted it surprisingly well. Doug never complained and laughed about my mistakes and failures with his low protein foods. Jason complained, but accepted it anyway. Amazingly, except for a few setbacks, their phe levels have been less than 10 mg/dl (600 micromol/L), with most less than 6 mg/dl (360 micromol/L) on 450 mg phe/day. They love low protein products. We try new foods all the time. I have become an avid bread baker and the boys go through many loaves of bread in a week. They both drink Phenyl-Free three times a day and don't mind it. There is no question about diet in our house. It is "just the way we do things." We approach the diet in a very positive way. And it is working beautifully. Being grandparents, the hardest part has been resisting giving them that extra spoonful, but we've done it for their sakes.
We have been well rewarded. The lethargic, lifeless, negative boys who arrived on our doorstep one year ago, are no longer. Even the clinic cannot believe the transformation. They have become alert, outgoing and vivacious. Their eyes sparkle now. Both have an excellent sense of humor and are always joking around. Both boys had tremors, eye quivers and were clumsy and falling when they arrived, especially Jason. Jason 'failed' his neurological exam. Those physical problems are gone now, too.
On the few occasions when the boys have lapsed on their diets, many of the old problems return. Concerned about 'peer pressure', Doug once went off the diet for several weeks. During that time he was fired from his job at McDonald's due to his inability to control his temper. He was simply 'out of control', even smashing the windows of his car for no reason. He was very 'hyper' and couldn't sleep. He also developed severe muscle spasms and we ended up taking him to the emergency room at the hospital. His thinking became less clear. Normally very meticulous and clean, he didn't even care about his personal hygiene. Everything changes drastically when his phe level rises! He now recognizes this and that helps him stay on the diet.
When Jason's phe level rises, we notice that he reacts differently than Doug. Jason becomes sluggish and depressed. He loses energy and becomes much less talkative (and his talk becomes more negative).
Both boys have a long road ahead of them. They are in mental health counseling. Jason's testing has shown that he is probably capable of going to college, but emotionally, he still needs a lot of help. He now is trying to get into an independent living program. Doug's I.Q. is the most affected. He dropped out of his special education high school program earlier, but is back in school, studying the building trade and doing well.
We are optimistic that with excellent diet control and a loving home, Jason and Doug will continue to surprise and delight us with their progress. It now seems like they have been with us forever. Although it has been a lot of work, especially at our age, it has been so rewarding. Life is really better than ever for us. Our calendars have never been busier! We love the boys to death. And we believe they're definitely on the right track for a better future.