Recommened Medical Tests for those with EB

*NOTE- this is no medical advice.  This is just the recommendation of one EB Clinic and its doctors in January of 2024.  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. 

Recommend Blood Work for All Forms of EB starting at age 1 OR for those who have never had blood work done before

TSH

T4 Free

Vit D3

CRP

Sed Rate

CMP (comprehensive metabolic which includes liver and kidney functions)

CBC w/ Differential 

Vit C

B12

Zinc

Other Yearly Tests that are Recommended for all forms of EB

EKG 

Echocardiogram

Dexa Scan

Infants with Junctional EB should have the following done starting at age 1 month due to malnutrition issues and months and as needed going forward:

CRP

Sed Rate

CMP (comprehensive metabolic which includes liver and kidney functions)

CBC w/ Differential 

Vit C

Zinc

Vit D3

Additional recommended test for those with RDEB, JEB or severe EBS and/or have a history of anemia, liver and/or renal issues

Ammonia

Full Iron Panel

Copper

Expanded Hepatic Panel

EB knowledgeable nutritionists are recommending the following nutrients, micronutrients and heavy metal panels at least once every 1-3 years and then repeat as needed based on previous results, patients nutritional status and overall health. 

• Vitamin A

• B Vitamins

• Thiamin – Vitamin B1

• Riboflavin – Vitamin B2

• Niacin – Vitamin B3

• Pantothenic Acid – Vitamin B5

• Vitamin B6

• Biotin – Vitamin B7

• Folate (Folic Acid)

• Vitamin B12

• Vitamin C

• Vitamin D

• Vitamin E

• Vitamin K

• Choline

• Calcium

• Chloride

• Chromium

• Copper

• Fluoride

• Iodine

• Iron

• Magnesium

• Manganese

• Molybdenum

• Nickel

• Phosphorus

• Potassium

• Selenium

• Sodium

• Zinc

 

Heavy Metals: Arsenic, Cadmium, Cobalt, Lead, Mercury 

Chewable Iron Supplements

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!

Chewable Iron W/ Vit C