Hi everyone,
We have learned in recent months that it is beneficial to keep detailed records of your/your child's treatment. This is helpful
for yourselves, your regular doctor, in case you relocate or are under the care of a new doctor, if you ave an opportunity to see a specialist doctor like Dr. Vichinsky.
Detailed records allow you and medical professionals keep track of changes in your health and general trends - ie. transfusion requirement.
Try to note:
pretx hg, transfusion volumes received at each tx, total tx volume received in a month/year, ferritin values over time, dosages of chelating drugs, growth patterns, activity levels or any other interesting trends or facts relating to your child.
We have been asked to record these events ourselves and have found it very helpful.
Sharmin