How I Helped My Son Through His Treatment-Resistant Depression Diagnosis
Allison is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program, made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
If a Janssen treatment has made a difference in your life or the life of a loved one, we hope you will consider joining the SHARE Network. Every story is unique. If you are an adult living with treatment-resistant depression, talk to your doctor to figure out a treatment plan that’s right for you.
My name is Allison, and I’m a mother to five children, including two stepchildren. My son Austin is 21 years old, in the middle of my five kids, and lives with treatment-resistant depression (TRD). He loves to cook, garden and compost and is planning to go to chef school, once the coronavirus calms down. Austin’s always been a skilled learner, getting straight As throughout school. He even taught himself all about horticulture and how to cook. He’s just a curious kid and loves to learn about anything that he can get his hands on.
During Austin’s senior year of high school in 2017, we began noticing some changes in his behavior – he and his girlfriend just broke up and he was experiencing his first heartbreak. It was traumatic for him. He slept a lot – like 12-14 hours a day – his hygiene became less important and he didn’t have the same zest for school anymore. He was accepted to the University of Kentucky in the fall on an academic scholarship – but suddenly there was a truancy officer at our door because he stopped going to school during his second semester.
I have a background in psychology, so when things got worse, I started to notice some troubling red flags. He was angry a lot and would destroy his room. I quickly got in touch with a psychologist to help. But we live in a really rural area, so she was two hours away. I’d drive Austin back and forth, and she did help for a little bit. Fortunately, he started attending class again and was able to graduate from high school. For a small period of time, Austin seemed back to his old self. We hoped that the upcoming change of scenery at college would be helpful, especially since he would also be geographically closer to his therapist while in college.
Unfortunately, things got worse when Austin went to college. Austin knew something wasn’t right with himself, too, but it was hard for him to verbalize exactly what it was. We tried to have those tough conversations about what was on his mind, but it was too hard for him to express his emotions. Sometimes anger would take over. We’d try to talk during his therapy sessions, and his therapist would serve as a mediator between the two of us. I was constantly making the four-hour drive back and forth between where we lived and where Austin was at school. I needed to be there for him, no matter what, but it was hard trying to balance Austin’s mental health needs, my job, and being there for my other children, too.
When we started talking about treatment options, one of the options was medication. And that worked for a little bit, but after a couple of months, the medication stopped working. So, we’d try a different medication, and he’d call me and tell me the symptoms were coming back. We’d try the same process again, over and over. We’d feel like we were making headway, then suddenly we’d be back at square one. His psychologist and psychiatrist team would work together to find the right balances, but there was just an endless back and forth between treatment. This back and forth lasted for approximately one and a half to two years before Austin was finally diagnosed with treatment-resistant depression (TRD). It was difficult to understand how to proceed with his diagnosis. But as hard as it was for me to watch Austin struggle with his depressive symptoms, it was almost unbearable for him.
During this trial and error period leading up to his TRD diagnosis, Austin ended up having to drop out of college during his first semester, and he went to a really dark place as a result. I will never forget when his psychologist called me and said she was really worried about him, and not soon after that, he attempted suicide. I still get emotional thinking about it; no mother wants to get that phone call. Ever. He went into his first inpatient facility, and I’m really grateful for the treatment he got there. But that time just felt like a blur. We were all in survival mode, to the point where my other children felt neglected at times. Depression is tough, because whether it’s you living with it or a loved one, it demands all your time and attention just to try and manage the disease, often taking away from other people and activities. This was especially true for me as a working mother of five. My other children had life changing events of their own, but as a family we just wanted Austin to feel better and make sure he knew we would always be there to support him no matter what. I know I have a lot of making up to do for the time I missed with my other kids, and I’m glad I have the ability to make up for that time now.
Things started to get better when Austin began treatment with SPRAVATO® (esketamine) CIII nasal spray in 2019. After so many tries with other medications, we heard about this one, at the suggestion of a friend and did our own research about the medication before consulting with Austin’s psychiatrist, who recommended that Austin try the medication in addition to his oral antidepressant. At first, it was scary to try another treatment, especially when so many hadn’t worked before. Everything about the process was new. Austin had to go to a facility to get it, which was also new and different from the typical trips we would make to the pharmacy to pick up his medication. Throughout the entire journey, we worked as a team of three — my husband, him, and me – making sure Austin felt motivated and supported to continue treatment and helping him research different treatment options when one didn’t work. If one of us didn’t agree on a course of treatment, it would not happen. And while SPRAVATO® may not be not be the right course of treatment for everyone, we agreed on it for Austin and I’m glad we did.
Since Austin wasn’t allowed to drive or operate machinery until the day after treatment following a good night’s sleep, I drove Austin to and from his treatments initially. I waited while he received the treatment and his doctor monitored him for potential side effects including high blood pressure, sedation and dissociation (Please see Important Safety Information including BOXED WARNINGS and a list of side effects below. Click here.). I became more comfortable with the treatment process, and my parents started taking him since they lived in the same town that Austin was living in. After a few weeks, we started noticing small, positive changes. Austin would call me just to catch up. Then he’d share progress he was noticing, like getting up before noon. As time went on, he started expressing interests in activities again, like going out socially, which was a huge step for him. He even wanted to eventually go back and finish college. He started exercising, gardening and cooking again. He’s really at peace when he has his hands in the earth. That’s his meditation. That’s what really works for Austin as part of a holistic approach to treatment. He even has a full garden in the backyard! He’s grown kale, pumpkins, zucchini, squash — so many different vegetables. I think that this combined with the rest of his treatment plan is really what keeps him centered. I remember thinking, I am getting the old Austin back. It’s the best feeling in the world.
This didn’t happen overnight for us; it took a lot of persistence. I liken it to starting a new exercise routine. At first, you feel like you’re running through mud. It’s hard. Then one day, it feels like sand. After a while, it feels like pavement and before you know it, you’ve hit the ground running and suddenly there is light at the end of the tunnel.
People who are struggling with serious illnesses such as TRD sometimes aren’t able to advocate for themselves. My message to other caretakers to someone living with TRD is to be your loved one’s best advocate. If one thing doesn’t work, change something. Ask questions and don’t give up. It’s hard to see your loved ones struggling every day. Especially as a mother, the last thing you want to see is your child suffer, but over time, things can get better. And don’t forget that caretakers need to take care of themselves, too. For me, that means biking and having a solid support system. But whatever that means for you, just make sure you make the time to do it!
This story was shared with Austin’s permission.
What is SPRAVATO® (esketamine) CIII nasal spray?
SPRAVATO® is a prescription medicine, used along with an antidepressant taken by mouth to treat:
- Adults with treatment-resistant depression (TRD)
- Depressive symptoms in adults with major depressive disorder (MDD) with suicidal thoughts or actions
SPRAVATO® is not for use as a medicine to prevent or relieve pain (anesthetic). It is not known if SPRAVATO® is safe or effective as an anesthetic medicine.
It is not known if SPRAVATO® is safe and effective for use in preventing suicide or in reducing suicidal thoughts or actions. SPRAVATO® is not for use in place of hospitalization if your healthcare provider determines that hospitalization is needed, even if improvement is experienced after the first dose of SPRAVATO®.
It is not known if SPRAVATO® is safe and effective in children.
IMPORTANT SAFETY INFORMATION
SPRAVATO® can cause serious side effects, including:
- Sedation and dissociation. SPRAVATO® may cause sleepiness (sedation), fainting, dizziness, spinning sensation, anxiety, or feeling disconnected from yourself, your thoughts, feelings, space and time (dissociation).
- Tell your healthcare provider right away if you feel like you cannot stay awake or if you feel like you are going to pass out.
- Your healthcare provider must monitor you for serious side effects for at least 2 hours after taking SPRAVATO®. Your healthcare provider will decide when you are ready to leave the healthcare setting.
- Abuse and misuse. There is a risk for abuse and physical and psychological dependence with SPRAVATO® treatment. Your healthcare provider should check you for signs of abuse and dependence before and during treatment with SPRAVATO®.
- Tell your healthcare provider if you have ever abused or been dependent on alcohol, prescription medicines, or street drugs.
- Your healthcare provider can tell you more about the differences between physical and psychological dependence and drug addiction.
- SPRAVATO® Risk Evaluation and Mitigation Strategy (REMS). Because of the risks for sedation, dissociation, and abuse and misuse, SPRAVATO® is only available through a restricted program called the SPRAVATO® Risk Evaluation and Mitigation Strategy (REMS) Program. SPRAVATO® can only be administered at healthcare settings certified in the SPRAVATO® REMS Program. Patients treated in outpatient healthcare settings (e.g., medical offices and clinics) must be enrolled in the program.
- Increased risk of suicidal thoughts and actions. Antidepressant medicines may increase suicidal thoughts and actions in some people 24 years of age and younger, especially within the first few months of treatment or when the dose is changed. SPRAVATO® is not for use in children.
- Depression and other serious mental illnesses are the most important causes of suicidal thoughts and actions. Some people may have a higher risk of having suicidal thoughts or actions. These include people who have (or have a family history of) depression or a history of suicidal thoughts or actions.
- How can I watch for and try to prevent suicidal thoughts and actions in myself or a family member?
- Pay close attention to any changes, especially sudden changes, in mood, behavior, thoughts, or feelings, or if you develop suicidal thoughts or actions.
- Tell your healthcare provider right away if you have any new or sudden changes in mood, behavior, thoughts, or feelings.
- Keep all follow-up visits with your healthcare provider as scheduled. Call your healthcare provider between visits as needed, especially if you have concerns about symptoms.
- Tell your healthcare provider right away if you or your family member have any of the following symptoms, especially if they are new, worse, or worry you:
Do not take SPRAVATO® if you:
- have blood vessel (aneurysmal vascular) disease (including in the brain, chest, abdominal aorta, arms and legs)
- have an abnormal connection between your veins and arteries (arteriovenous malformation)
- have a history of bleeding in the brain
- are allergic to esketamine, ketamine, or any of the other ingredients in SPRAVATO®.
If you are not sure if you have any of the above conditions, talk to your healthcare provider before taking SPRAVATO®.
Before you take SPRAVATO®, tell your healthcare provider about all of your medical conditions, including if you:
- have heart or brain problems, including:
- high blood pressure (hypertension)
- slow or fast heartbeats that cause shortness of breath, chest pain, lightheadedness, or fainting
- history of heart attack
- history of stroke
- heart valve disease or heart failure
- history of brain injury or any condition where there is increased pressure in the brain
- have liver problems
- have ever had a condition called “psychosis” (see, feel, or hear things that are not there, or believe in things that are not true).
- are pregnant or plan to become pregnant. SPRAVATO® may harm your baby. You should not take SPRAVATO® if you are pregnant.
- Tell your healthcare provider right away if you become pregnant during treatment with SPRAVATO®.
- If you are able to become pregnant, talk to your healthcare provider about methods to prevent pregnancy during treatment with SPRAVATO®.
- There is a pregnancy registry for women who are exposed to SPRAVATO® during pregnancy. The purpose of the registry is to collect information about the health of women exposed to SPRAVATO® and their baby. If you become pregnant during treatment with SPRAVATO®, talk to your healthcare provider about registering with the National Pregnancy Registry for Antidepressants at 1-844-405-6185 or online at https://womensmentalhealth.org/clinical-and-research-programs/pregnancyregistry/antidepressants/.
- are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with SPRAVATO®.
Tell your healthcare provider about all the medicines that you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. Taking SPRAVATO® with certain medicine may cause side effects.
Especially tell your healthcare provider if you take central nervous system (CNS) depressants, psychostimulants, or monoamine oxidase inhibitors (MAOIs) medicines. Keep a list of them to show to your healthcare provider and pharmacist when you get a new medicine.
How will I take SPRAVATO®?
- You will take SPRAVATO® nasal spray yourself, under the supervision of a healthcare provider in a healthcare setting. Your healthcare provider will show you how to use the SPRAVATO® nasal spray device.
- Your healthcare provider will tell you how much SPRAVATO® you will take and when you will take it.
- Follow your SPRAVATO® treatment schedule exactly as your healthcare provider tells you to.
- During and after each use of the SPRAVATO® nasal spray device, you will be checked by a healthcare provider who will decide when you are ready to leave the healthcare setting.
- You will need to plan for a caregiver or family member to drive you home after taking SPRAVATO®.
- If you miss a SPRAVATO® treatment, your healthcare provider may change your dose and treatment schedule.
- Some people taking SPRAVATO® get nausea and vomiting. You should not eat for at least 2 hours before taking SPRAVATO® and not drink liquids at least 30 minutes before taking SPRAVATO®.
- If you take a nasal corticosteroid or nasal decongestant medicine take these medicines at least 1 hour before taking SPRAVATO®.
What should I avoid while taking SPRAVATO®?
Do not drive, operate machinery, or do anything where you need to be completely alert after taking SPRAVATO®. Do not take part in these activities until the next day following a restful sleep. See “What is the most important information I should know about SPRAVATO®?”
What are the possible side effects of SPRAVATO®?
SPRAVATO® may cause serious side effects including:
- See “What is the most important information I should know about SPRAVATO®?”
- Increased blood pressure. SPRAVATO® can cause a temporary increase in your blood pressure that may last for about 4 hours after taking a dose. Your healthcare provider will check your blood pressure before taking SPRAVATO® and for at least 2 hours after you take SPRAVATO®. Tell your healthcare provider right away if you get chest pain, shortness of breath, sudden severe headache, change in vision, or seizures after taking SPRAVATO®.
- Problems with thinking clearly. Tell your healthcare provider if you have problems thinking or remembering.
- Bladder problems. Tell your healthcare provider if you develop trouble urinating, such as a frequent or urgent need to urinate, pain when urinating, or urinating frequently at night.
The most common side effects of SPRAVATO® when used along with an antidepressant taken by mouth include:
If these common side effects occur, they usually happen right after taking SPRAVATO® and go away the same day.
These are not all the possible side effects of SPRAVATO®.
Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
Please see full Prescribing Information, including Boxed WARNINGS, and Medication Guide for SPRAVATO® and discuss any questions you may have with your healthcare provider.
For more information about SPRAVATO®, please visit www.spravato.com.
This information is intended for the use of patients and caregivers in the United States and its territories only. Laws, regulatory requirements and medical practices for pharmaceutical products vary from country to country. The Prescribing Information included here may not be appropriate for use outside the United States and its territories.