Caring for a Child with an Eating Disorder, Self Harm, and Suicidality

By K

Note: I will share some of our journey below, but it does describe self harm (SH) and suicide attempts (SA). If you prefer to jump to the personal insights and resources, then please scroll down past the main entry. 

While eating disorder sites frequently state that self harm (SH), suicidal ideation (SI), and suicide attempts (SA) routinely accompany eating disorders, none of these sites tell you what it is actually like to care for someone struggling with all these issues simultaneously. Part of me is reluctant to write about our experience because this is not my sole story to tell. However, if our story can help another family feel less alone or provide a useful tip for caregivers, then it will be worth sharing. 

My daughter’s struggles with atypical anorexia, SI, and SH started when she was 12. She moved rapidly from outpatient treatment, to a partial hospitalization program, and then to a residential/inpatient facility where she was dependent on a nasogastric tube for both food and water. Since starting treatment for her eating disorder, she has also been to the emergency room three times for suicidal attempts/intent, has been hospitalized, and has been in an inpatient psychiatric ward. 

While my daughter had engaged in mild, superficial self harm prior to the residential treatment center, her SH rapidly worsened after admission. With no access to sharps, she started scratching and repeatedly hitting her head, arms, and legs often several times a day and especially around meals. She definitely used other coping mechanisms and was often successful for a meal or snack.  However anorexia (AN) treatment involves three meals and three snacks every day, so the next stressor was always just a couple hours away.  Her worst meals were the ones where she ate something she actually wanted and then felt so guilty afterwards that other coping mechanisms and medications simply proved insufficient to manage her intense distress. 

I learned that the protocols at the eating disorder facility prohibited any physical restraint by the staff for self harm.  They tried separating her and another child who engaged in SH from the main group at meal times, and they suggested distractions or breathing exercises. When those were not enough, they would administer rescue medications. My daughter’s arms accumulated more wounds daily. At the same time, however, the weight loss finally stopped and then started to reverse with the constant nutrition through the NG tube. Our family desperately hoped that we might see even a little shift in her distress once the acute starvation was halted, but unfortunately her distress only increased with refeeding. 

My daughter’s suicidal ideation, planning, and intent also skyrocketed with her descent into her eating disorder. It remained at a 9 out of 10 every day for months. She was on suicide protocol in residential which involved zero access to the outdoors, constant daytime line of sight, open bedroom doors, and checks every 15 min overnight.  Two weeks after starting residential, my daughter voluntarily disclosed to her in-house therapist that she had made a suicide attempt in the overnight hours two days prior. Because of her disclosure, the eating disorder facility’s protocol dictated that she must be transferred to an acute psychiatric facility immediately. Even though she was completely dependent on the NG tube for both water and nutrition at that time, the tube was pulled for the transfer because the psychiatric facility could not manage it. We were told that if she showed signs of medical decompensation at the psychiatric ward, then she would be transferred to the hospital. 

Needless to say, our family was shocked. We were confused and frightened by this decision because to us, it appeared to stem more from a fear of liability rather than what was truly in the best medical interests of our daughter at that time.  Fortunately, we lived within driving distance, so instead of the psych transfer, we drove for hours in the middle of the night to pick up our child and transported her directly to an ER. She was immediately hospitalized, her NG tube was replaced, and she was placed under 24 hour supervision. On the positive side, she ended up finding it much easier to eat and drink in the hospital when she was no longer around other eating disorder patients. Because she was eating enough, she was discharged back to our care at home just five days later. 

Her return from the hospital required us to create our own inpatient ward at home. We scrambled to get the house ready. We got a safe to lock up all medications, installed a cabinet lock for sharps, and moved her mattress into our room. While we could prepare our house, we honestly could not prepare for how to take care of her mentally in such an intense stage. We were suddenly overwhelmed with the need to provide 24/7 monitoring, to continue the eating disorder care, to minimize the SH that came with every meal, and to keep enough hope alive to lessen the chance of another SA, all while caring for her three siblings. 

While she did continue to eat at home, her SH continued daily as it had in residential.  We were able to intervene most of the time, but not always.  She also developed increased purging behaviors which unfortunately did not respond to the typical prevention protocols. All the while, her SI remained intense. We did our best with the help of a fantastic parental therapist who was knowledgeable in eating disorders, SH, and SI. She helped to guide us through the confusion, the fear, and the self-doubt as we faced every day and every meal with her.  Fortunately, her uncle came in from out of town and lived with us for two months during the worst time. Her siblings tried to be out of the house or sequestered themselves upstairs to avoid seeing their sister in such distress. 

Two weeks after returning from the hospital, my daughter had another SA which we halted. We immediately took her back to the ER, and this time she was transferred to the first available pediatric inpatient psychiatric facility with an open bed.  Despite knowing her eating disorder history, there was no eating disorder protocol and the staff showed her her weight. Their protocol for SH stated that if she self-injured, she would be required to wear a hospital gown on the coed adolescent floor, or she would be placed in restraints and asked every 15 minutes if she could use other coping mechanisms.  She suddenly found herself surrounded by a group of teens with fresh wounds and severe scarring who would openly discuss their desires to get out of the facility so they could return to their substance abuse and self harm. She felt scared and overwhelmed by this exposure to yet another population of intensely struggling kids. She did meet with a psychiatrist after admission, but they made no offer to discuss any medication changes despite our request. She was released back to our care three days later.  The one positive take away from this otherwise traumatizing experience for her was that she was really motivated to not go back to this psych ward.  

We have learned through experience that our daughter tends to do much worse in both higher-level-of-care and in group settings. Fortunately, we have been able to create a good outpatient team.  She is now 13, a birthday which she openly stated that she did not think she would reach. At this point, she eats regularly and is weight restored with a generous cushion. With the help of an amazing psychiatrist, we have found a fairly effective medication regimen which we continue to optimize.  Her eating disorder and SI thoughts and her SH behaviors still persist although with less severity, and she has made so much progress.  She was able to return to school for two hours a day for the last quarter and has reconnected with her friends, which definitely reduced her SI. She was also able to resume her sport (with eating disorder therapist and eating disorder physician approval), which absolutely improved her SI.  For her SH, we have settled on a harm reduction approach while she continues to increase her use of alternate coping skills with the help of her therapist who specializes in eating disorders and DBT (Dialectical Behavioral Therapy).  Even though it is heartbreaking that I can’t always protect her from herself, I do my best to minimize the risk of severe harm and I try to have alternate strategies readily available for when she is able to employ them.  

While my daughter’s situation has certainly improved, she still struggles on a daily basis and her care is both emotionally and financially draining. I have learned to consciously enjoy the calmer periods.  I cherish the moments when she laughs and smiles. I am getting better at managing both the ever present worry that comes with wondering when the calm will break, and the fear that comes with wondering if my best efforts will not be enough.  During the tough times, I try to remind myself of the progress we have all made and that we are not starting over at zero when she regresses. I also acknowledge the profound sadness that comes with watching her struggle so hard just to feel like she deserves to be in this world despite all our love and all our ongoing efforts to support her.  

Throughout this journey, I have scoured the internet, books, podcasts, videos, and talked with numerous therapists and medical providers to educate myself in order to learn how to balance treating the eating disorder with managing the SH/SI for someone who is at high risk for attempts.  At each stage, we have tried to make our best decisions for treatment based on a combination of professional advice, our knowledge of our child, and what we have learned about her unique response to various methods along the way. There continues to be a lot of trial and error.  Below, I have provided some of my insights and some of the resources that I have found particularly helpful. I would love it if other caregivers would leave additional resources and pearls of wisdom about what has helped their loved ones in the comments section.  I hope our story helps to contribute to the FEAST community’s mission to provide support to its members with compassion and humility.  At the very least, I hope that sharing our story helps other families feel less alone.

In hope, 

K

Personal Insights and Resources

Personal Therapy

Separate from our daughter’s outpatient team, my husband and I meet regularly online with our own therapist who has lots of experience with crisis intervention for suicidal individuals and is knowledgable discussing self-harm and eating disorders. These sessions have been invaluable. They allow us to discuss our fears freely, to guide our communication, and to collaboratively adjust our harm reduction and safety plans with the help of an expert.

For Suicidal Ideation (beyond the fundamentals of locking up lethal means in the home)

1. Schedule numerous, small, short term and medium term activities to look forward to. For example, schedule a phone call with a loved one, a short outing with a friend, a trip to the movie or bookstore or lake, a ticket to an upcoming show or concert.
2. Learn how to talk to your loved one about suicidal thoughts. I found many useful tips in this book by Dr. Stacey Freedenthal: https://www.amazon.com/Loving-Someone-Suicidal-Thoughts-Harbinger/dp/1648480241
3. Clearly both eating disorders and suicide attempts can be lethal. Specific eating disorder care is usually not provided when our loved ones are transferred to an acute psych facility, but eating disorder facilities often will not treat someone who expresses suicidal intent and a plan. However, the suicidality that comes along with eating disorders is not usually resolved in the time frame of an acute psychiatric hold. Getting abruptly transferred between so many different treatment facilities and providers was destabilizing for all of us, most especially for our daughter. While difficult, we learned that we could do a lot at home to minimize a successful attempt while also trying to renourish. Working closely with our outpatient team helped us to craft and modify safety plans and have rescue medications at home while allowing us to maintain continuity of care. 

For Self Harm

1. Personal Tips 
   1. Have some ice packs ready to go to use during an SH episode to provide a rapid, safe stimulus.
   2. Have a box with a variety of distraction/substitution items in easy reach.
   3. Ask for a short pause during the SH behavior. For example, “Can you pause and take 2 breaths then resume? Ok, now can you pause and take 3 breaths?
2. Resources I Have Found Helpful

http://www.selfinjury.bctr.cornell.edu/index.htm

https://www.selfinjurysupport.org.uk/

Podcast: The Psychology of Self-Injury with Nicholas Westers 

– Individual episodes are helpful and the show notes provide additional suggested resources.

Communication Tips

1. Role Play – My daughter will role play SI and SH thoughts and actions with her stuffed animals.  She often communicates what she needs for herself as she helps her favorite animal to stop scratching, or head banging, or wanting to jump. 
2. Communication Journal – We have a shared journal in which we can write messages and ask questions to each other. She is sometimes more willing to answer a question or share a thought that she finds scary or shameful by writing it instead of saying it out loud. 

Medications

1. Lithium – While my daughter is on a cocktail of medications, lithium was a game changer for her and it is known to decrease SI. You MUST ensure it is locked up and that the tablets are actually swallowed and not hidden because an overdose is definitely life threatening.
2. Rapidly Disintegrating Olanzapine – These prescription tablets have been super helpful as an acute rescue medication for both SI crises and SH episodes. They can be used on a stand alone basis or on top of a maintenance dose of olanzapine. For her, the rapid tabs start working in about 5 min, whereas the regular oral tablets take anywhere from 30min-1hr to kick in. We have definitely avoided additional ER visits with this medication at our disposal.