Not one direct path

You need to do what is right for you. Nobody walks in your shoes.

The biggest challenge was getting diagnosed. I visited more than 50 different doctors (several multiple times). Several doctors I could tell did not even want to touch me, being told terrible things, so unbelievable to feel that a doctor was not there to try and help figure out what was wrong. That was the worst feeling. Feeling so lost and unsure of what to do next.

I have learned I’ve had to really reach inside myself to ask questions, and be persistent. One can be diagnosed with multiple other things, but truly understanding why these things have occurred is key. You must get answers, find a doctor that truly grasps the data from a range of tests and has the experience to interpret the data and symptoms.

As a mom you must be assertive in getting answers for your children. This may involve multiple diagnostic tests and searching for doctors willing to treat adolescents. In our case that took us to out of state resources. The good news- our kids were extremely resilient and could be closely monitored as they took their treatments at home. We’re so thankful to be in the right hands of great doctor (s).