Diet Coke and Mentos

The breakdown of Autism Spectrum Disorder and Mast Cell Activation Disease both are WAY more complex than what I have written here, I needed a simple way to explain each diagnosis to focus on how the combination of these two conditions impact Finn.

I've been struggling at trying to write something about Mast Cell Activation Disease and Autism Spectrum Disorder. It's kind of like adding fuel to a fire, but not sure which one is the accelerant.

Autism Spectrum Disorder is a neurological condition that is diagnosed with the ADOS/ Autism Diagnostic Observation Schedule with focus in areas with repetitive behaviors, sensory, social and communication.

Mast Cell Activation Disease or Mast Cell Activation Syndrome is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems.

Both are umbrella terms. No one's Autism is exactly like someone else's and no one's Mast Cell Activation Disease is alike there are symptoms that seem to be pretty generalized across the board with both conditions, but there are no exact cases.

My issue with Mast Cell Activation Disease and Autism Spectrum Disorder is it's like this feeding frenzy. I don't know which feeds what, but with the sensory issues it's a ticking time bomb!

Sensory overload and then a meltdown = EXPLOSION/Mast Cell Activation Reaction

There is physical stress, mental stress and emotional stress. All of those things trigger Mast Cell Activation reactions. It causes degranulation/release of chemical mediators of Finn’s mast cells. Finn will flush, it can causes him to swell, it increases behaviors. Those behaviors range from being absolutely inconsolable, mood swings from a super high to super low, being combative, poor emotional regulation or he's curled up in a ball because his stomach hurts. He strains to go to the bathroom and has the skin break down on his bottom it bleeds and is swollen and red. His whole body hurts some days, I know he has leg and foot pain, headaches so bad he can't have any lights on.

Reactions impact his ability to communicate with his Nova Chat the AAC Device he uses to “talk”, he has a hard time using sign language, gestures or his word approximations. Finn’s means of communication become something you can not hear, you have to decode with your eyes, hands and intuition.

Finn being nonverbal is the hardest in all of this, I just don’t know exactly how HE feels. He has an extremely high threshold for pain. Finn doesn’t show pain like typical kids, even registering pain there is a delay too. Going to doctors is hard, they don’t see what I see at home because he is overwhelmed in the sensory department he is up and sometimes climbing the walls trying to regulate. Doctors have quick to dismiss him because he is “upright and acting ok” not taking into consideration how Autism impacts him in situations like this.

Autism Spectrum Disorder and Mast Cell Activation Disease in summary is Diet Coke and Mentos. I am not sure which is the Diet Coke or the Mentos either way the combination makes a chemical reaction that results in an explosion.