*NOTE- this is no medical advice. This is just the recommendation of one EB Clinic and its doctors. Each person with EB is different and require different treatment plans and medical tests. PLEASE consult your primary doctor with question regarding these tests for yourself or your child.
Per the Cincinnati, OH EB Clinic the following tests are recommended for all patients with EB:
Routine tests every 6-12 mo
· Erythrocyte Sedimentation Rate (ESR)
· Fe, Fe binding capacity, Ferritin
· Liver function tests (incl. albumin)
· Renal panel (BUN, creatineine, electrolytes)
· 25 (OH) Vit D and Ca, Se, Carnitine
· ECG (1/yr)
· Bone mineral density (1/yr)
July 26, 2010
For those who have a child who needs to take iron supplements you know how hard it can be to get them to take it! Another EB mom found a great solution!!! Chewable Iron Pills! She said they are grape like Flintstones Vitamins and are child takes them willingly!