Entering therapy for Eating Disorder

[kcdc3]

So I finally had my doc refer us to eating disorder clinic. Intake called today and we have an appointment on Monday. I told my dd about this and she went into a fit of rage. She says that she is going to curse them out and lie to them. She says that she will tell them all the lies she can think of. She said that she has been doing better and does not understand why we are doing this. She said that I needed to be prepared....that she would get worse just like she did when we went to therapy for the OCD. It's threat after threat and she is sooooo angry. She says I will be wasting my money.

I just don't know what to do. I can't let this go on, but on the other hand if she is so resistant to this, will it do any good and am I really throwing my money away????? Is there any weight to the fact that you have to want to change??

[eljomom]

Gosh I'm so sorry about this. How old is your daughter? My oldest (not pandas) had an eating disorder/feeding disorder (not so sure it WASN'T pandas...looking back) due to major anxiety (not body issues...). We started her in treatment when she was just 5 1/2 years old. I was so afraid it would make her worse, talking about something that already made her anxious. I can't say she was angry or openly resistant, but more just anxious about going. I believe, even when looking at myself, when I get the most angry, I am really just scared. Fear. Loss of being in control. All of those things will bring out anger in me, sort of like you feel better feeling angry than anxious, more in control feeling angry than not. Not sure if that makes sense, but maybe that's just part of her being afraid, anxious, etc... and not wanting to face it all. Also, I do believe that if you are with a really reputable clinic, I would think they are very equipped to deal with this sort of thing. I would bet they see as many kids who are NOT excited about treatment as they do who are. I mean, honestly, if you are dealing with an eating disorder, you HAVE anxiety somewhere going on, right?

 

I would also call the clinic and ask to talk to someone (not just the receptionist)....maybe even a clinician, and ask them what they do/recommend in this situation. Should you go ahead and drag your angry child in, and let THEM deal with it?? I wouldn't expect your daughter to overnight just come out and say "you know what, you're right mom, this IS in the best interest for me..", so even if you do get her to go, and she continues to put on the angry face, she may be softening inside. Not saying this from any kind of personal experience or anything....cough...cough...

 

Hoping you can just get your foot in the door, one step at a time....

[Dedee]

Oh I am so sorry you are going through this. It must be tearing you apart. My 15 y.o son was sooo resistant to outpatient counseling about his eating issues also. We started about 2 years ago. He has some residual PANDAS stuff about not eating a big variety of foods and it has started to bother him as he becomes a teen and is more social. He has tried to work on it his on way but I find him crying or upset about upcoming events that he knows will involve food. So I took things into my own hands and made him go to counseling. He wasn't quiet as resistant as your daughter but he was very angry. Wouldn't talk to me. Very abrupt and rude to the counselor. At first I was hurt. Then I got over that.:-) So I had to tell him he could be mad or hate me or whatever, but it is my job as a parent to make sure you are healthy, emotionally, physically, and spiritually and that is what I will do. I was very firm and told him that I loved him and that is why I take my job as his parent so seriously. He stayed mad for a couple of weeks and I would say the first few sessions with the counselor were a bust but then he lightened up and things have gone well since. He has been going off and on for a couple of years now and never complains anymore.

 

I realize you are dealing with a much larger issue here. But the fact remains that she is not able to understand at this moment why she needs this treatment, but that doesn't mean it isn't vital to her progress. The professionals who deal with teens have seen their share of reluctant participants. Very few teens go into these things willingly. If you trust where you are sending her and you know this is in her best interest, then you need to stay strong in your decision. Don't let anyone (including her) make you doubt your motherly instinct. I know this is hard. I am so sorry for what your family is going through. I truly hope things work out for your daughter. Please let us know how things go.

 

Blessings - Dedee

Edited March 14, 2011 by Dedee

[T_Mom]

I am so, so sorry you are dealing with this-- Anorexia (sudden onset) episode of literally about 4 months--was the most frightening thing I have ever gone through as a mom. I would say that it does NOT matter that your child is resistant--if there is an eating disorder, the person who is ill will be resistant. The Maudsley (sp?) method was what the Children's Hospital in DC AN Clinic used -- our d was 9 at the time. However, if this same were to show up today I would do IVIG or pex asap for our daughter (now that we know she has a PANDAS triggered illness--and AN was a symptom of the first episode!... read Dr. Mae Sokol's work on PANDAS and eating disorders.) I guess what I am saying is that the team at the Eating Disorders Clinic should be a help--just be sure that if it may be PANDAS that you are aggressively treating it medically as well. This is very serious and as the psych at the AN clinic told me, YOU (the Mom/Dad) will have to go toe-to-toe with the illness on your child's behalf. I would throw every resource possible at this as soon as possible.

Edited March 15, 2011 by T.Mom

[EAMom]

Hi kcdc3,

 

how old is your dd? I see that she had her tonsils out in Jan. What antibiotic is she on?

 

Does your dd have a distorted body image? Or other reason for anorexia (fear of choking, contamination)?

 

My PANDAS dd was hospitalized for anorexia /acute food refusal/distorted body image 3 years ago (age 7.5 years/2nd grade). She was really bad off (depressed, bipolar behavior, nurse was recommending long term inpatient facility for OCD...). She had dropped from about 50 pounds to 43 pounds within 2-3 weeks, was eating 1 small meal/ day (about 300 calories). She was a child who was normally in the 25th percentile for weight...and had completely fallen off the charts. I had never been so scared in my life.

 

For us, the hospitalization (6 days inpatient/Maudsley method, followed up by a few months outpatient) was useful in getting her back to eating INITIALLY...we also learned about Pandas at the time (not from the ED clinic, they were non-believers), insisted on a throat culture (positve, also positive perianal, also younger sister was positive on the rapid--neither child had sore throat/fever)...so we were able to start Augmentin (x10 days) at the time.

 

That said (could have a much longer story)...dd was in a crisis and needed to be forced to eat, so the hospital was good for that. I also think the SSRI (longer story) helped, and most importantly, the antibiotics. After 2-3 mo., we were still battling the eating disorder...and what really made a huge difference was

1) getting strep out of the household (clearing her carrier sister...Azith. finally worked, augmentin didn't)

2) getting PANDAS dd on the right antibiotic at the right dose. She did pretty well on Augmentin (10 days) but relapsed on prophylactic doses of amoxicillin (250mg 2x daily). Ceftifur didn't help (10 days). The real turnaround was after 5 days of Azith (250mg/day) and advil (starting yelling at us less), then after 10 days of advil/azith she started eating again/"decided to get better" (we were very close to re-hospitalizing her before starting the Azith).

 

We did eventually end up doing IVIG (about 1.5 years later, and then again 6mo. after that). She wasn't in crisis at the time, be we could see her baseline was changing with viral illnesses (h1n1, fifth's, and strep exposure). She is on 250 mg/day Azith, 200mg advil, and a low dose of prozac to this day (she's going to be 11 this summer). She's 90-95%, growing normally, has some residual ocd/movements/learning issues...but overall doing well, certainly nothing like the $%%^& of 2nd grade. (I do wonder if we had done IVIG sooner, if she'd be 100%?)

 

Anyway, for us, the eating disorder clinic, while it was useful intitially, didn't really "get" my dd or PANDAS. They kept trying to treat her like all the older non-pandas patients (they were NOT pandas believers). Ultimately, getting her to cooperate with the appointments was rather hellacious...and I don't think it did much at all towards her recovery. (NOTE: the initial 6 days of inpatient treatment WAS helpful, since it jumpstarted her eating). What really made a difference was treating the underlying infections/immune disorder...and in hindsight I wish we had done even IVIG sooner that we did. Also be aware that PANDAS anorexia is supposed to be more likely to replapse after 1 IVIG, so you may need to do at least 2 treatments. I would also be VERY aggressive with antibiotics, and making sure the household is clear (and stays clear) of strep.

Edited March 15, 2011 by EAMom