Forums » Smalltalk » AMA: Parent to a Son with a Severe Mental Illness

Hi!

My son has Schizophrenia, and he is one of the rare cases where it developed at an extremely young age.

I’m in a group called Angry Moms. We’re trying to get our voices heard. Our main goal right now is related to a prescription medication called Clozapine.

I’m an open book. AMA!

Hi! I have a brother with severe autism. If you don't mind me asking, what is your life like? And can you elaborate more on your goal about Clozapine?

Hello, Stormie!

Thank you for sharing that, and for your dedication to raising awareness and advocating for your son and others who face similar challenges. It’s really inspiring that you’re part of a group like Angry Moms working to amplify voices and make change. Schizophrenia, especially when it develops so early, is incredibly tough to navigate.

Since your group is focused on Clozapine, I’d love to know more about what you’re working on. Are you advocating for better access to Clozapine, raising awareness of its potential, or addressing specific issues like side effects or the challenges with prescribing it for younger patients?

For the most part, our life is pretty sweet; however, a doctor took my son off Clozapine and we went through the most horrible time of our lives. He was completely psychotic, delusional, paranoid, and violent. We now have a doctor in another state who is simply amazing. He is a big advocate for Clozapine.

My son has to have monthly lab work drawn to keep an eye on his neutrophil (white blood cells) count. Clozapine can lower the count.

Clozapine is the only thing that works for some people with the illness, yet because of all the requirements involved with dispensing and taking the medication, many doctors won’t prescribe it. It has a stigma attached to it. We are trying to change the stigma and the reporting requirements.

Clozapine is the only antipsychotic that doesn’t increase the risk of suicide.

The amazing doctor we have treats the side effects with other medications and by pushing his patients to be more physically active and to make healthier diet choices.

When children get diagnosed with (relatively) serious conditions, I know parents can go feeling like they're almost invisible as individuals, having to be at the frontlines advocating for and taking care of their children regardless of how they're doing because that's what parents do.

So I guess my primary question is, how are you doing? What do you do to help you maintain your own identity and well being so you can be who your son needs you to be?

One thing that so many of us here do is I write. I leave my world behind and dive into my stories. Besides writing here, I keep a journal.

Also, I work outside of the house. I love playing with numbers and arranging them in a way that makes sense to others. I’m a Program & Management Analyst, so my job is all about analyzing and presenting metrics.

Lastly, lunch and/or pedicures with friends. Not much beats just chatting away openly with someone you trust for a couple of hours.

Very thoughtful question. Thanks for asking.

One of my favorite co-workers Schizophrenia. He was a really smart guy, developing chess A.I.s in his off-time (that was before the A.I. boom), it felt like he really was wasted on the crappy tech-support-job.
Due to his condition, he lost a lot of his 20s, something I hope would happen less with de-stigmatization, and hopefully better knowledge about treatment.
He left for a better job as I did, and I hope he does well!

Are there any common mistakes and just wrong ideas when it comes to Schizophrenia that many people hold? Something more people should just be aware of?

One thing is that the illness comes with both positive and negative symptoms. Positive would be things the illness adds such as hallucinations or delusions. Negative symptoms are things the illness takes away such as cognitive function. These vary from person to person.

People are often afraid of Schizophrenics. Sometimes, that fear is warranted, but for the most part they are simply struggling with trying to live a fulfilling and normal life like everyone else.

One particular woman, Elyn Saks, I follow (book, podcasts, etc.) managed to get her PHD and has tenure at a prestigious college while coming on and going off her meds. I have complete admiration for her.


The illness doesn’t present itself the same in every person. Treatment is the only way for meaningful recovery. Speaking of Meaningful Recovery, the following was developed by my son’s doctor.

How has insurance impacted your fight for access to the right medications?

We have excellent insurance, and because of his disability, he has Medicaid. Insurance has never been an issue with the Clozapine or any of his other meds. Pharmacies have been an issue though. If his lab results aren’t in the REMS system, they won’t fill it. We now get his Clozapine from a pharmacy in New York, and we live in the southeast.

Good question!

I have a grandmother who has Schizophrenia. She is homeless because she has fears when living with others. She is always sick because he is afraid of doctors. I am so glad you have made a helpful commitment. My question is, are there different forms of Schizophrenia?

First, I am VERY sorry to hear about your grandmother’s situation. That’s a tough one.

It used to be broken down into subtypes, but not any longer. Sometimes you will still hear people mention “Paranoid Schizophrenia,” but from a diagnostic standpoint it is now just called “Schizophrenia.”

My son was diagnosed with “Early Onset Childhood Schizophrenia,” but the only time I mention that subtype is when giving a medical professional his detailed history.

I actually put him in a study at the National Institute of Mental Health in the beginning because we couldn’t get answers. That particular program no longer exists, but it got us on the right track.

Thanks for asking!