My sweet, beautiful little baby sat quietly in her car seat as the doctor described the HUNGER that would surely come with Prader-Willi Syndrome. His advice was to restrict her calories and lock up the food in our house. Not to allow others to eat around her and be prepared for her to think she was starving but not allow her additional food. Yeah.... that sounded horrific to me as well.
The combination of hunger and slow metabolism was described as the main characteristic of PWS. Where are we now? Ayden Jane not only accepts that she has to eat differently, she can make the choices on her own. She can order her own meals at restaurants and fix her own meals at home as needed. There are no locks on our fridge or pantry and Ayden Jane is left unsupervised regularly. These are things that were unheard of by her original doctor.
The most amazing piece with Ayden Jane, however, is that she can 'read' her hunger and full signals. I do not think they are they same as a typical person, nor are the quite as reliable, but she has learned to use them to help guide her. She will stop eating and tell us she is full. This I NEVER get tired of. We can trust her when she says she is hungry, or still hungry and requests a bit more at meal time. It is not frequent and she always talks through it. Mom, I'm still a little hungry. Should I wait a few minutes and then decide if I need more food? Or, I am still hungry, would more vegetables be the best choice? I think I had plenty of meat....
Most kids with PWS will also talk, think, dream about food. I mean, hard to focus on school or anything else food on the brain. Also, they worry about food. What food will be there, what will I be able to have, how much will I be allowed.... Since Ayden Jane is not constantly hungry she does not have food always on her brain.
I can't say how Ayden Jane has reached this point but I can say she has eaten low carb, moderate protein and high fat since the start. We have also talked about food and how her body uses food extensively. She understands the science behind how she eats and how PWS effects her nutritional needs. I am also very aware that different kids with PWS just vary in this symptom like all the others.
The combination of hunger and slow metabolism was described as the main characteristic of PWS. Where are we now? Ayden Jane not only accepts that she has to eat differently, she can make the choices on her own. She can order her own meals at restaurants and fix her own meals at home as needed. There are no locks on our fridge or pantry and Ayden Jane is left unsupervised regularly. These are things that were unheard of by her original doctor.
The most amazing piece with Ayden Jane, however, is that she can 'read' her hunger and full signals. I do not think they are they same as a typical person, nor are the quite as reliable, but she has learned to use them to help guide her. She will stop eating and tell us she is full. This I NEVER get tired of. We can trust her when she says she is hungry, or still hungry and requests a bit more at meal time. It is not frequent and she always talks through it. Mom, I'm still a little hungry. Should I wait a few minutes and then decide if I need more food? Or, I am still hungry, would more vegetables be the best choice? I think I had plenty of meat....
Most kids with PWS will also talk, think, dream about food. I mean, hard to focus on school or anything else food on the brain. Also, they worry about food. What food will be there, what will I be able to have, how much will I be allowed.... Since Ayden Jane is not constantly hungry she does not have food always on her brain.
I can't say how Ayden Jane has reached this point but I can say she has eaten low carb, moderate protein and high fat since the start. We have also talked about food and how her body uses food extensively. She understands the science behind how she eats and how PWS effects her nutritional needs. I am also very aware that different kids with PWS just vary in this symptom like all the others.
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