National Eating Disorders Association

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Musicmomw
First post - Need some input on therapy

Hello all! I've been a lurker here for a little bit. I have an inquiry for which I could use some input.

My 17-year-old son was hospitalized as an inpatient in an eating disorder program back at the end of June. It took me and our doctor some time to pull the right strings to get him there, but it finally came to fruition. Orthorexia nervosa. His heart rate was very low, as was his blood pressure. His brain was no longer functioning properly, and his kidneys were not processing urine. There were so many medical items taking place. It was terrifying. They saved his life. He had a 'lightbulb' moment upon entering the hospital, and he was cooperative throughout the entire process. He spent a month in the hospital, and he now attends there weekly as an outpatient, for team meetings. Everything resolved medically, and he is steadily gaining weight. He is entirely cooperative with me and his team in his healing process.

Here's where I'm puzzled: two Child Youth Workers form part of his multidisciplinary team (plus a nurse-practitioner, dietician, and pediatric doctor if needed). Their business cards state that they are 'mental health therapists' who graduated from a CYW program. A psychiatrist met with my son once in the hospital and determined that he did not require that level of assistance. My late husband suffered from bipolar disorder and OCD. So the team is also aware of the genetic predisposition and how it played into the development of the ED. They have talked many, many times about therapy. First they mentioned CBT (which he had already been doing with a therapist before entering the hospital). Then it was the suggestion of DBT. They then returned to the CBT promise. Yet they did absolutely no therapy with him while he was an inpatient, despite promise after promise. It was always, "We'll start therapy on Thursday." After Thursday came along with just a friendly visit from one of them, it would be, "We'll start therapy on Monday". And so it went, week after week. They regularly spent time in his room chatting with him about the weather or how he was filling his time, but it never went beyond idle chit chat. When he was discharged, I once again asked them when therapy would begin. They had been promising it throughout my son's entire stay at the hospital. The response was that it would be family-based and would take place at the weekly team meetings which my son and I would attend. They have still done absolutely nothing and we're six weeks out from his discharge. We drive 2.5 hours round-trip every week for them to weigh him, check his heart rate and take his blood pressure. They stopped doing blood tests because they said everything was fine a few weeks ago. After the nurse-practitioner does a quick check-up, we sit down with the dietician and one or two of the CYWs. They ask a few questions about eating (I am still responsible for the preparation and choices for my son's meals) and activity (he's still on restricted levels). And that's it! It seems very unproductive. And yet, we needed to miss one week with them to catch up on life after most of our Summer being spent in the hospital, and one of the CYWs actually called my home and harassed me about it. One week! They keep telling him how well he's doing, they give him zero therapy...we miss one week of what seems like next to nothing for aftercare simply because I'm exhausted and have a million things to do to get myself and my three children ready for school and caught up with life, and it's deemed worthy of harassment by one of the very people who are literally doing NOTHING to help my son. Very bewildering. If I ask them questions about therapy, they tend to psychoanalyze my questions and put the spotlight on me (as if I'm the 'problem'), and still do nothing for my son.

My son and I have been doing our own reading on therapy, even back while he was an inpatient. Some CBT to continue on with his previous counseling pre-hospitalization, and some DBT. We also go through workbooks. He still struggles with obsessive thinking on occasion. It isn't directed at food or exercise, but it's there nonetheless. His team is well aware of these thoughts, and have been since the beginning, and yet they haven't helped him at all. Not once. Don't get me wrong...I'm incredibly grateful for this program. I'm just very confused about the missing link of therapy for my son.

So, after all the background, my inquiry is: Is this typical? No therapy after almost 2.5 months within an ED program...is this typical? By the way, it is nice to have a forum of this nature in which to interact. There aren't many people who understand what all of this is like.

Thank you in advance!

justgina
Welcome

Hi Musicmomw, first off I’d like to say welcome to the forums! You've definitely come to the right place for support. This is a great community of people who understand what EDs are capable of and what struggles you might be going through as a parent. I am not sure how helpful my response will be in terms of therapy in an ED program, but I’m sorry to hear about your negative experience with those mental health therapists. I can see how that would be very frustrating when you’re trying to get your son the best help he can get. But I’m so happy to hear that he has been doing well with recovery and making progress!

Hopefully someone else will be able to share their experience with therapy in an ED program with you to answer your specific question, but in the meantime, I’d like to share a link to the NEDA helpline that might be useful for you, too.

NEDA Helpline (https://www.nationaleatingdisorders.org/help-support/contact-helpline): you can contact NEDA volunteers by phone or online chat. They can provide specific answers to some of your questions and they can also be a good shoulder to lean on when you just need someone to talk to.

Please feel free to keep us posted on what's going on with his therapy situation! We’re here for you. :)

iwanttolive
Musicmomw

Hi. I just read your post and I have to say I am a little shocked about what you said. I am not a professional but have been hospitalized many times. Therapy is an essential part of recovery as the eating disorder is a coping mechanism for sufferers who have no idea how to deal with underlying issues. It is an
obsessive and complicated illness. Without help, and therapy and a supportive environment it can be really tough to recover. I assure you that recovery is possible. The fact that your son did not receive therapy at the hospital. Did they have groups therapeutic groups? If it were me I would file a complaint. Was it a private hospital or one at a regular hospital based treatment. Now most of the time from my experience, the therapy provided at a hospital does not generally dig deep. They want the patient to get medically stabilized and stop behaviors. I am sorry you and your son had such a bad experience. Once released from the hospital is when a lot of difficult therapy takes place. I am glad you reached out for support. I hope I haven't confused you and you can take what was helpful and disregard the rest. Keep us posted on how things are going. iwanttolive

Musicmomw
iwanttolive - response to your comment

Sorry...response below. Didn't reply directly to your comment but it went into thread instead. Musicmomw

Belandmic
Outpatient programs

Hello our daughter age 14 has anorexia nervosa. She has been seeing Dr and psych weekly monitoring vitals routinely since May. Her weight continues to decline but psych says outpatient program monitors her chart and she does not meet criterior at this time.My husband and I are so confused. What does an intensive outpatient program look for? Her vitals were critical recently but have gotten better but the mental health and weight are not well. Her overall health is in decline. Does our child have to do a dance with death b4 someone says she needs more intervention? Feeling very alone, confused, and fearful. Its brutally painful to watch your babygirl waste away! Has anyone out there been here and done this? At what point do we meet criterior???

Musicmomw
Belandmic

Hello. First of all, I want to say how sorry I am to hear of your and your daughter's struggles. Although my 17-year-old son has the ED, my middle child is a 14-year-old daughter.

I wish I had answers for you. I know first-hand what you are talking about, watching your child decline, and it's horrible.

In Canada, we need either a referral to an inpatient program by a doctor, or presenting at the ER with life-threatening vitals. Our doc did a referral. The program asked us to admit through the ER. They said everything was arranged. It wasn't. We sat in the ER for hours before heading to a hotel for the night. Returned to ER the next morning. They apologized for the issues, and the process was successful. My son had a critically low heart rate by this point (amongst many other medical issues) and they still pondered whether or not to admit him. I felt like begging them to help him. I was terrified for him. Finally they went ahead. Once admitted, the staff commented on how dire the situation was. First they weren't sure in the ER because he was just below their 'danger zone' level, then they were totally sure after he moved to the ED department. Very confusing. And once he was there, they kept him for 4 weeks. No therapy, though, as an inpatient or since becoming an outpatient.

I am grateful for the ED program at our hospital. There's no doubt that they saved my son's life. But it has been a very confusing journey. Doctors and nurses constantly contradicting one another, promises of therapy that never comes to fruition, etc.

I truly hope that your daughter gets the help she needs. Stay strong and continue to advocate for her. Reach out to these forums for support and understanding. My heart goes out to your family. Feel free to chat with me any time. Musicmomw

Musicmomw
iwanttolive - response to your comment

iwanttolive...

Thank you for taking the time to respond to my post.

To answer your questions, there has not been any group therapy, either. Also, we are in Canada so it is regular hospital-based treatment.

Thanks for your insights and input. Much appreciated. Best wishes to you. :)

Musicmomw

2Joy2love
Musicmomw

Hi Musicmomw,
I am sorry to hear about your sons struggle with ED. How is he doing?
I have a 17 year old daughter who has ED and also struggles with multiple mental health issues When she was hospitalized for 2 months, she saw a therapist there that worked with her and with us weekly. She also had group classes throughout the week which taught her more about Ed, and how to use skills. They tried to teach her DBT skills, but she did not want to use them. After discharge she went to the ED Center's IOP program for the summer. She ate one meal there and also had a therapy session each week with a dietician and a therapist and then took about 5 more classes each week. The program was very much based on knowledge, skills, and family participation. Her therapist wanted her to do more intense DBT, my daughter very reluctantly agreed. For her to get into the program, I had to do it with her. We did this program at a county health center. So life changing for both of us. DBT takes a while to learn and practice. We went through the program twice, we were in it for a year and we went to one, 2 hour session a week together, then she went to a therapist who specializes in DBT once a week. Right now she sees her DBT therapist and her family doctor who does a safety check and checks her weight and vitals every other week. For us the skills learned through the DBT classes, and the classes she had when she was hospitalized were a crucial part to her recovery. Also for both of us to realize that I was there to support her, but only my daughter could actually be the one to conquer her ED.
How are you doing? And your other kids, how are they? ED not only affects those suffering with it, but also those around them. Please be extra kind to yourself. I got so caught up in trying to keep my daughter alive, that I got caught up in a ED black hole. I was not even able to do little things for myself because I was either so exhausted, overwhelmed, or felt guilty for doing so because my daughter was so sick. I finally saw my own therapist which helped me out immensely. I have learned to stop and enjoy the moments. My daughter tells people that I literally will stop whatever I am doing and will just enjoy the moment. My older son helping his brother do his homework, a beautiful sunset, my daughter laughing, my son telling me I a the best mom ever and he doesn't want me to forget it. Enjoying those little moments make such a difference.
2Joy2love