At-Home Management of Care of Diabetes Insipidus for Brain/Pituitary Tumor Patients

RAWF provides handheld blood analyzers to children that suffer from diabetes insipidus (DI) along with impaired thirst mechanisms due to hypothalamic damage in removal of a brain tumor.

Handheld blood analyzers are hospital grade devices that can deliver serum sodium results in minutes with a finger prick as opposed to days with standard lab turnarounds and more invasive venous blood draws which makes sodium management in young patients very challenging. Extreme high or low sodium can result in seizure, coma and can be fatal.

Unfortunately, these devices are expensive, not covered by insurance and difficult to purchase for home use.

At-home management allows caregivers and survivors more control of this condition and the opportunity to troubleshoot any sodium or electrolyte imbalances before its too late. We are working to remove roadblocks to purchase this device and get them into the hands of those children and families who will benefit.

"We are testing him each night and we were able to head off a low sodium episode over the weekend. It was 136, tipping near seizure level so we gave him Gatorade with added sodium and some salty snacks. It was 137 the next morning and 146 that evening.

This is so incredible! We would not have known without this device. He was a glass or two of water or a dish of watermelon away from the ER.

Thanks again we are so grateful!"

Lori O'Connell, Sterling, VA
Mother of Mikey, 11 year-old survivor and recipient of a handheld blood analyzer