My daughter Savanah was about 18 months when she was diagnosed with MHE. Since then she's had 5 surgical procedures. Ranging from removing a bump underneath her fingernail here in Phoenix to major surgery on her hip with Dr. Paley.
We were seeing a Orthopedic Surgeon here in Phoenix Children's Hospital and we were continually told that they see MHE everyday (they saw bone mass everyday but not MHE). But the more I watched my daughter and the more I read reports on MHE, especially Dr. Yamaguchi's finding that there could be a cognitive link to MHE, I knew that I needed to find a specialist that understood the perplexed Rare Bone Disease Called MHE.
I finally got in contact with Sarah Zeigler and Dr. Paley. After talking with Sarah multiple times, things started to make sense. For instance, Savanah has cognitive learning delays, she only likes certain foods and textures, speech delay and she gets tired very easily. The bumps pressing on her nerves which causes her pain throughout her body.
It's been a comfort knowing that Dr. Paley and Dr. Robins understand that MHE is a very complex and rare disease. And deals with it accordingly.