I want to share more about Taylor but instead of rewriting Taylor’s story, I am posting the text from a GoFundMe campaign we recently did to raise money for PrTMS treatment for Taylor.
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Our oldest daughter Taylor is a bright and witty 10-year-old who was officially diagnosed with autism, severe anxiety, severe depression, disruptive mood dysregulation disorder (DMDD) and ADHD two years ago. We are raising money for a treatment for her called PrTMS (Personalized repetitive transcranial magnetic stimulation) to help relieve some of her suffering and help her regain her childhood.
The reason we’ve decided to move forward with this GoFundMe is that despite our best efforts over the years working with therapists to help with behaviors, and working with psychiatrists to find the right combination of medications, Taylor is no better off and has had little relief from illnesses that she can’t control.
During this time, we’ve had minimal help from insurance and we’ve had to max out credit cards/lines of credit and borrow from family members to help pay for these expensive needs. We now have available to us a new treatment that insurance doesn’t cover but we feel strongly that it may help alleviate some of Taylor’s symptoms from these illnesses.
Here’s how we got to this point.
Prior to Taylor’s diagnoses, we knew something was off, even from the time she was a toddler. We suspected anxiety and depression, which run in both of our families. About three years ago, things started deteriorating very quickly for Taylor.
Taylor had daily explosive rages at home that lasted for hours triggered by seemingly nothing, and she started trying to run away from school on a daily basis. She got up to attempting to run 50 times a day (the teachers had to track it). She had to be restrained by teachers while she fought them off while screaming hysterically. She would throw things at the windows hoping to escape from the school, and when that didn’t work she would resort to kicking and hitting teachers and throwing books and computers.
This would continue for hours at times until the fight or flight instinct would wear off and then she would weep in a corner and talk about how she just wanted to die and how she wished she didn’t exist. At home, the rages were very common and would last for hours. It has always been very clear to us that these extreme emotions were outside of her control.
None of it is her fault and it is her natural, overpowering instinct to actively and involuntarily behave outside of her values. This is a heavy thing for a child to have to face and it is obvious to everyone close to her that she doesn’t want to behave this way. She is a prisoner to the wiring of her brain.
For the past two years, we have been seeing a child psychiatrist and multiple therapists to help Taylor. She has been on a number of anti-depressants and heavy anti-psychotic medications. We’ve used varying combinations and dosages of the following medications to help relieve some of her symptoms with little-to-no improvement:
Guanfacine
Zoloft
Prozac
Lorazepam
Risperidone
Abilify
Ritalin
Adderall
Benztropine
Depakote
Amantadine
Straterra
Wellbutrin
Geodon
Mirtazapine
Despite continual efforts with therapy and medication, Taylor still spends hours every day saying, “I want to die. Please just kill me. Kill me already. I wish I’d never existed.” She makes daily attempts to jump out of an upstairs window, and we know that it is not sustainable for a child to live like this.
Taylor’s anxiety is so extreme that most mornings include us parents physically dressing her for school as she kicks, bites, punches, and screams at us. One of us usually has to restrain her while the other parent comforts and helps the other kids — ages 8, 5 (also diagnosed with autism), and 3 — get ready for school. It is jarring, scary, and confusing for them, though after two years, it is no longer a surprise to them. Hearing suicidal talk from Taylor is a daily norm for our family.
Every day is a battle, especially for Taylor. She often wakes up between 3-4am and comes into our room saying, “I don’t know why I feel so sad, I just want to die.” She is in such a deep and continual depression that as her parents, we are constantly in a state of high alert. The extreme physical and emotional exhaustion we experience takes a heavy toll on all of us.
We’ve found Taylor in a dark room staring at the wall saying in a low, quiet voice, “There is nothing good. There’s only darkness.” While in a car, she has unbuckled herself while screaming and threatened to grab the steering wheel to cause a crash so that “we will all die.” She has also held a kitchen knife to her neck threatening to harm herself. Fortunately, we were able to remove the knife from her without incident. This has happened more than once, even with the kitchen knives hidden.
All of this has occurred while on medication.
Taylor feels incredible shame and guilt after her rage episodes and often states how she can’t help it and how sorry she is. We always tell her that we love her and that we know it isn’t her fault. We speak openly with her and her siblings about her diagnoses. She tells us she wants to get help but doesn’t know how.
This is why we need a new treatment to help Taylor.
This is where PrTMS comes in.
PrTMS is a drug-free, pain-free, and noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression, anxiety, and autism, among other things. This more personalized approach to transcranial magnetic stimulation (TMS) is relatively new and only available at 12 locations around the country. We are fortunate enough to live within 2 miles of a new location that offers this service.
Insurance won’t help cover this treatment for Taylor, or any child under age 18. Despite this, the medical professionals that we have consulted with believe that PrTMS can be most effective during childhood, before critical brain synapses have fully developed.
PrTMS for Taylor will include daily treatment sessions for a minimum of six weeks at a cost of $2,250 per week. The total cost for six weeks of treatment is $13,500. Depending on her progress as shown by weekly brain scans, additional weeks of treatment may be required. Often six to eight weeks of treatment is enough to see marked improvement and lasting results.
We are grateful for any support you can offer, even if only through thoughts and prayers. We do really feel those.
We currently live day to day, often hour to hour, not knowing how much longer Taylor can fight this.
Please help us help Taylor reclaim her childhood.
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The GoFundMe campaign was a success and we were blown away by the support we received from so many people. Many people contributed both emotional and financial support. We are forever grateful. We plan to post updates about Taylor’s progress with PrTMS here.