@tjriley Welcome to Mayo Clinic Connect! I was diagnosed with MALS over a decade ago. I am now 50 years old. I believe I had symptoms most of my life and they went undiagnosed for many years. The seizure-like activities with altered consciousness level symptoms is not something I have heard before with MALS pain, however it would not surprise me if this is the way she is coping with the severe pain. MALS pain can be severe and debilitating. I am happy to hear you are going down the neurological work up avenue. Both MALS and Seizures can be a difficult diagnosis and one that take time and patients. I think starting with the celiac block is a wise decision given her age age and symptoms. There is a physical component to MALS along with a psychological component that is not addressed properly in my humble opinion. A good therapist that understands chronic pain and rare disease may be helpful to your daughter, in addition to the block. For me MALS has become chronic and learning coping skills and how to become my own advocate through therapy has been helpful. To give you a bit of my background I have an underlying vascular disease and connective tissue disease that went undiagnosed through out my teenage years through early adulthood. MALS was found through workup for my vascular disease and once it was identified it took me three years to be comfortable seeing out treatment. The pain like I said earlier can be severe, it lead to food avoidance and malnutrition. I have had 2 open surgeries for MALS. Many children do well with the laparoscopic approach to correcting MALS. This diagnosis takes a toll on a family, and I cannot imagine what it must be like to see your child go through this. Please know you are not alone in this. I am so happy you have found Mayo Clinic Connect. This is a small group but an amazing, strong supportive group. Stay strong and take one moment at a time.

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