Hello and welcome to
Marrowforums. We have several members who are parents of pediatric patients who I hope will chime in with their suggestions, but I thought I'd share some ideas with you myself. I remember the pressure to drink enough when I was on cyclosporine for months after ATG. It is hard for an adult to consume enough to keep their creatinine down. It must be especially challenging with an 8 year old who probably wants nothing more than to be like her friends and forget all this medical stuff!
Your daughter may still be young enough to respond to some standard tricks of parenting that include involving her in planning how to drink enough at school. Go through her day with her and have her suggest times she could stop and drink a little. Add your own suggestions but keep her in charge of the planning. To engage the teacher and help your daughter feel in control, meet with the teacher and have your daughter describe her plan and give the reasons why she knows it's important.
Some other ideas come to mind:
- have her drink very small quantities more often--even as little as 2-4 ounces an hour will go a long way toward meeting the goal of 64 ounces a day
- make a game out of drinking from small, interesting containers like measuring cups or grown-up coffee mugs
- fill a jug with 64 ounces of water at the start of a day and each time she takes a drink, remove that amount from the jug. She'll see her progress and her goal at the same time.
On the medical side, have her doctors considered switching her from cyclosporine to Cellcept (mycophenolate mofetil)? I made that switch after my transplant when gut gvhd was a problem. The doctors thought Cellcept would be more effective against gvhd and a side benefit was that it was less stressful on my kidneys.
Hope this helps. Please let us know how your daughter is doing.
Regards,
Ruth Cuadra