Help Get Isaiah into a Treatment Study Group
Donation protected
We have recently discovered the specific - and newly identified - phenotype of Bipolar that Isaiah suffers from: Thermoregulatory Fear of Harm Mood Disorder, or Fear of Harm for short.
FoH is a brutally disruptive, extremely difficult, diagnosis for both the child and the family. Children with FoH interpret normal, neutral stimuli as life-threatening and will respond with an extreme fight-or-flight response in a split-second. This response is triggered by any amount of limit-setting or a perceived threat of loss. Attempting normal parenting practices of rules and consequences is like walking in a minefield with a real threat of bodily and material harm as the child with FoH is completely incapable of perceiving the alleged threat as anything other than life or death.
Obviously, this impacts all areas of life, including educationally and socially. We have a daily wrestling match with Isaiah's school in our on-going efforts to try and get them to meet his emotional needs while still challenging his brighter-than-your-average-bear abilities. Additionally, the almost daily crises have had a huge impact on Gly and my health (physically and emotionally). Fortunately, my job has been infinitely understanding of my needs to take off work in order to provide the support our family requires, and Gly works for herself. Still, the financial strain is very real and an unrelenting stressor.
Now, for the good news: Dr. Demetri Papolos, the director of the Juvenile Bipolar Research Foundation, and titan in the field, has discovered a borderline miraculous treatment for this particular phenotype. He has found success with the use of intranasal ketamine.
The therapeutic effects of ketamine on children with FoH is still not entirely understood and is unavailable for anyone under the age of 14 outside of the rigorously controlled trials that Dr. Papolos, himself, runs. Sadly, these trials using this highly controlled substance ends up being very expensive. And so here we are.
Those of you who know Isaiah, you know him to be an incredibly sweet, sensitive boy underneath all of the struggles of his diagnoses. Ketamine treatments have had remarkably consistent success in reducing symptoms for children with FoH to nearly zero. The promise of being able to give him a life free of the struggles he experiences every waking moment is too good to pass up. This is an opportunity for Isaiah to get control back over his life, free from the symptoms that disrupt his ability to function through even the smallest daily task. And so we have turned to you, our friends and loved ones, to help us achieve this goal of giving Isaiah an opportunity to be stable and symptom-free for the first time.
The initial cost to enter the study is $2,000 with an additional $700/mo for the continued treatment over the 6-month study.
Many of you know a plethora of the details of the daily struggles we experience in our efforts to help him with his needs. For those who don't, here are some links that clearly and accurately describe Isaiah's life with Fear of Harm.
An NPR piece from 2013:
How An Unlikely Drug Helps Some Children Consumed By Fear
The Fear of Harm website from the Juvenile Bipolar Research Foundation:
https://fearofharm.jbrf.org/
A short YouTube video explaining FoH:
https://youtu.be/0jlbQW2v5zM
Gly and I thank you, from the very bottoms of our hearts, for any support you're able to provide.
FoH is a brutally disruptive, extremely difficult, diagnosis for both the child and the family. Children with FoH interpret normal, neutral stimuli as life-threatening and will respond with an extreme fight-or-flight response in a split-second. This response is triggered by any amount of limit-setting or a perceived threat of loss. Attempting normal parenting practices of rules and consequences is like walking in a minefield with a real threat of bodily and material harm as the child with FoH is completely incapable of perceiving the alleged threat as anything other than life or death.
Obviously, this impacts all areas of life, including educationally and socially. We have a daily wrestling match with Isaiah's school in our on-going efforts to try and get them to meet his emotional needs while still challenging his brighter-than-your-average-bear abilities. Additionally, the almost daily crises have had a huge impact on Gly and my health (physically and emotionally). Fortunately, my job has been infinitely understanding of my needs to take off work in order to provide the support our family requires, and Gly works for herself. Still, the financial strain is very real and an unrelenting stressor.
Now, for the good news: Dr. Demetri Papolos, the director of the Juvenile Bipolar Research Foundation, and titan in the field, has discovered a borderline miraculous treatment for this particular phenotype. He has found success with the use of intranasal ketamine.
The therapeutic effects of ketamine on children with FoH is still not entirely understood and is unavailable for anyone under the age of 14 outside of the rigorously controlled trials that Dr. Papolos, himself, runs. Sadly, these trials using this highly controlled substance ends up being very expensive. And so here we are.
Those of you who know Isaiah, you know him to be an incredibly sweet, sensitive boy underneath all of the struggles of his diagnoses. Ketamine treatments have had remarkably consistent success in reducing symptoms for children with FoH to nearly zero. The promise of being able to give him a life free of the struggles he experiences every waking moment is too good to pass up. This is an opportunity for Isaiah to get control back over his life, free from the symptoms that disrupt his ability to function through even the smallest daily task. And so we have turned to you, our friends and loved ones, to help us achieve this goal of giving Isaiah an opportunity to be stable and symptom-free for the first time.
The initial cost to enter the study is $2,000 with an additional $700/mo for the continued treatment over the 6-month study.
Many of you know a plethora of the details of the daily struggles we experience in our efforts to help him with his needs. For those who don't, here are some links that clearly and accurately describe Isaiah's life with Fear of Harm.
An NPR piece from 2013:
How An Unlikely Drug Helps Some Children Consumed By Fear
The Fear of Harm website from the Juvenile Bipolar Research Foundation:
https://fearofharm.jbrf.org/
A short YouTube video explaining FoH:
https://youtu.be/0jlbQW2v5zM
Gly and I thank you, from the very bottoms of our hearts, for any support you're able to provide.
Organizer
Jeff Gretz
Organizer
Fair Lawn, NJ