Help Lexi Overcome The Dark Shadow of OCD

Suicide is the second leading cause of death for young people ages 10-24.
LGBT youth are more than four times more likely to attempt suicide than their peers.

My name is Gina and I am the mother of three amazing children. Two of my children have suffered from a severe mental illness which has led to thoughts of suicide.

We do not want our child to be just another statistic.

We thought we knew what mental illness was but we had no idea until OCD invaded our lives.

OCD, Obsessive Compulsive Disorder, can range from mild to severe. Moderate to severe OCD is severely disabling as the obsessive thoughts and compulsive actions consume endless hours, robbing the person of living day-to-day life.

My older daughter has overcome severe obsessive compulsive disorder yet as a family we struggled for years to get her the help she needed. It robbed her of the innocence of childhood. My older daughter is 21 now and is employed and living on her own. Yet, she has large gaps in her memory of her childhood during the time that she most suffered. For my younger daughter, severe OCD is still a real issue.

Our third bouncing bundle of joy arrived in our lives, on January 8, 2009 and she completed our family of 5. Lexi began walking before 10 months, likely to keep up with her older siblings who are 7 and 11 years older than she is. At the age of 4, she taught herself to play chess with an Usborne Chess picture book. She was riding a bike at 5 and also quickly earning belts in Tae Kwon Do.
Creative, imaginative and full of energy, Lexi has developed a love of digital art, photography, and bird watching and is gifted with a multitude of computer skills.

Despite all her talents, she was silently suffering inside. She had told us at age 2 that she was a girl despite the label on her birth certificate. It took us years to catch up with her and for all of us to come to an acceptance of her true gender identity.

Lexi experienced unusual stress as a toddler including her older sister’s sudden onset of OCD. And the stress of being without her primary caregiver (me) when her father suffered a nearly fatal heart attack.

From a young age, she would obsess about the placement of her large stuffed animal collection with the need to repeatedly count them. She also needed to have things just right as well as several irrational fears. In some ways, her issues looked similar to her older sister's and yet different. Someone with OCD realizes that these obsessive thoughts and compulsions do not make sense and yet they feel powerless to change because of the insurmountable fear that something bad will happen.

She has since been diagnosed with OCD, general anxiety, social anxiety, depression and gender dysphoria. Yet, she is so much more than those labels.

The standard of treatment for OCD includes Exposure Response Prevention (ERP) therapy and/ or medication. Our older daughter was able to overcome her OCD with a qualified therapist and medication.

You would think that two parents who have gone through the challenges of OCD would know what best to do when a second child showed signs of OCD.

We thought we knew. We found a therapist and a psychiatrist and went to a developmental pediatrician and Occupational Therapy. We sought to utilize natural and alternative practices before resorting to psychotropic medication for our kids. We took out any possible offending foods like gluten and dairy as well as artificial food additives. We added supplements like fish oil, vitamin D, inositol, magnesium, digestive enzymes, amino acids and probiotics. All of those things have been helpful but they have not been enough.

Lexi has a therapist who specializes in gender dysphoria yet we have known she needs additional therapy to specifically address the OCD.

In 2021, we found NBI in Westin, Florida and they have a treatment program specializing in complex cases of anxiety and OCD. We met online with a therapist from NBI. We paid the out-of-pocket fee for an initial consultation, $400. Yet, we were unable to come up with the necessary funds to attend this program. After continuing to search for something more local since that time, we believe that NBI may be the only solution for our daughter despite the distance and cost. We need both the funds to have a place to stay during her treatment which could be up to 3 months and the cost of the program which is estimated to be $12,000 per month.

We have tried some online therapists since 2021 and yet it was not enough to address the severity of her OCD. Even with a qualified therapist, it is a time commitment for us as well to follow through with the ERP therapy. All of these efforts have been at a great cost to our time and income.

In the fall of 2022, her symptoms got worse. The psychiatrist changed her medication to see if a different SSRI medication would be more effective. Despite initial improvement with the new medication, things quickly got worse with increased agitation, outbursts of rage and anger that led us to the hospital ER multiple times and even to being admitted to the behavioral health unit. Yet, even in the hospital, there is no regular individualized therapy and there is not a qualified OCD therapist.

It has been heart-wrenching and emotionally exhausting to hear our child say that she feels her life is useless and wants to die. We called 911 because we feared for her safety and we watched her be handcuffed by police. Despite how we have experienced these events, we know it has been that much worse for our daughter.

We have exhausted all efforts to find treatment in NC as well as treatment covered by our insurance. It is time for us to move forward to get her the intensive treatment that she needs.

We need financial assistance for her to attend the intensive OCD program at NBI.

We are even considering selling our house to be able to pay for her treatment.

Lexi is 14 years old and we want so much more for her life than the suffering she has been experiencing for most of her life. We see her shine when she is online with friends, taking pictures of birds or explaining a complex concept to us. She deserves to have more positive moments in her life and the ability to overcome her challenges.

If you have the means to help us and also the ability to share our story, we ask for your help.

I find inspiration in music and every time I hear this song, I sing it to my daughters.

I wish someone would have told me that this darkness comes and goes
People will pretend but baby girl, nobody knows
And even I can't teach you how to fly
But I can show you how to live like your life is on the line
You throw your head back, and you spit in the wind
Let the walls crack, 'cause it lets the light in
Let 'em drag you through hell
They can't tell you to change who you are
That's all I know so far
And when the storm's out, you run in the rain
Put your sword down, dive right into the pain
Stay unfiltered and loud, you'll be proud of that skin full of scars
That's all I know so far
Lyrics from: All I Know So Far, by Pink

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Gina Grothoff
Charlotte, NC

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