My husband and children are still at the lake enjoying the tail-end of the 4th of July holiday week. It is Saturday evening. I am sitting on my deck…by myself…enjoying a glass of red wine listening to music softly playing in the background. It is one of those magical summer evenings - perfect temp and wonderful soft breeze. My husband has built me beautiful cedar boxes now full of blooming flowers, basil and tomatoes. Above me…blue sky and twinkle lights that will automatically sparkle at dusk. I realize this is first time I have been alone since September, 17th, 2020. 296 days…but who is counting.

This past week our daughter has struggled. She has not regressed or in a place of crisis, but her mind and body have reminded us we still have a journey ahead. Lately one might say she is better. She is managing her anxiety and panic in bigger and more ways. But recently we had our suspicions confirmed that our daughter has mastered the art of avoidance and her world has become much smaller…a world that is that is not healthy or sustainable.

Reflecting back, we made so many mistakes in our highest and best efforts to help our daughter. Mistakes I am fairly confident made her worse. I do not mention this from a place of guilt or regret (although any parent would wish for a “do over” with additional knowledge and experience), but I am sharing the following so others might learn from us/our experience.

I have mentioned in past posts that I have believed for some time that physical symptoms (such as shortness of breath, feeling of being hot, dizziness…etc.) are triggering our daughter’s anxiety and panic. We see far less of the reverse…anxiety and panic initiating the symptoms mentioned. Our daughter has consistently mentioned she is not afraid of school or dance (her biggest triggers, for example), but she does have an association between these activities and panic attacks (a PTSD of sorts). Yet, treatment to date has included medicines that exacerbated these physical symptoms, breathing exercises, fidgets and various coping mechanisms designed to manage anxiety. Funny thing is (and we have noticed this time and time again), a panic attack is a terrorized state (an individual’s body is in a state of fight-or-flight)…fidgets are simply not going to work. Now, I understand the goal would be to utilize coping mechanisms to manage the anxiety caused by the physical symptoms associated with a panic attack…ahead of a panic attack. But sadly, I think we have been approaching our daughter’s mental health all wrong…and not out of highest and best intent by all involved…mental health is simply not well understood and easily diagnosed…at least that has been our experience.

So, 296 days after our daughter’s first panic attack with no significant mental health issues prior to this event, it is believed she simply (but not really simply) has a panic disorder as a result of trauma experienced last fall. I mention “simply” because we have ruled out mental health conditions triggered by infectious disease or PANS/PANDAS. To put it simply…our daughter is afraid of having a panic attack…just like a person who has been in a terrible car accident might be afraid of driving.

I need to pause and mention here…why did it seem anti-inflammatories and antibiotics were helping manage or decrease frequency of panic attacks? I am not a doctor, so I cannot say with confidence, certainty or any proof. But, from our experience, it seemed that these treatments were managing the physical symptoms triggering anxiety and panic. Anti-inflammatories were controlling or preventing headaches, increased body temp…generally made our daughter feel better. Antibiotics were preventing our daughter from getting sick…feeling sick. You remove these physical symptoms for a length of time and the body learns to be less afraid or less on edge. I am not convinced they were treating anything or actually decreasing any inflammation in the body…I simply think they were managing the physical symptoms that were triggering our daughter’s panic or panic related anxiety. In addition, we congruently stopped the use of benzodiazepines…this alone was a significant and improved adjustment.

We are engaging a master level psychotherapist this week that specializes in the treatment of panic disorder/PTSD. He utilizes Exposure and Response Prevention therapy (ERP). His goal…to teach our daughter not to be afraid of her panic or the physical symptoms associated with panic. This does not mean avoiding a panic attack…this means teaching her not to be afraid of the panic attacks she most certainly will have. Approach is graduated. Eventually with time the mind and body are re-trained or re-programmed to not be afraid. Panic attacks go away or decrease enough to allow “normal” and healthy function. But, I am not going to lie or sugar coat it…we most likely have an uncomfortable month or few ahead of us…then we tackle the after-math of the last year and potentially irreversible consequences.

There is simply no other option anymore…around it does not work…the only way is through. Everyday we tell our daughter to be brave…we pray she/we have the courage to beat this disorder that has rocked our world. And once beat (whatever “beat” looks like)…we then begin the journey of learning how to live with the different path paved…regardless if we wanted to take it. We are on it and there is no going back.

What gives us hope and strength…for the first time in nearly a year, we are told our beautiful daughter will be dancing again by fall. Today my husband sent me a picture of our oldest dancing in the yard behind the cabin…I have never met anyone more determined.