Has anyone had a child hospitalized due to an eating disorder or failure to thrive?

[houseofkids&pets]

My 12 year old dd has been diagnosed with failure to thrive due to disordered eating. She does not have anorexia or bulimia, but is extremely underweight due to OCD and her germ phobias. She hates food! She checks all of the due dates, won't eat food prepared by anyone other than a family member since she is worried that it is contaminated, won't eat in public places, won't eat red meat since she heard about mad cow's disease, etc.

 

Long story short, we have been working with doctors in a hospital clinic that specializes in eating disorders since mid-August. She initially was putting on the expected weight at her weigh-ins, which is 1-2 pounds per week. However, her progress has plateaued and the doctors feel that we have given it a good try at home, but a 30 day hospitalization would be best to get her to the target weight. I agree that she is resistant to eating and it is difficult to get her to consume the set number of calories a day, but she is still making progress. At the last weigh-in, she gained less than a pound over the 2 week span, but she did gain.

 

Sorry to be long winded, but I am really struggling with what to do. I don't want her in the hospital at all, especially since it is almost Christmas. My dd is so anxious about everything, she would be terrified. Her OCD and anxiety really just sky rocketed over the summer and now she won't even sleep alone in her bedroom since she is afraid someone may break in our home or there may be a fire, etc.... I can't imagine the fear she would feel at the hospital. DH thinks it is our only choice. I guess my question is, has anyone ever had to hospitalize a child due to an eating disorder??

 

For the record, my dd's pediatrician was monitoring her weight every few months since dd had "fallen off" the growth curve over the past couple of years. The ped. never seemed concerned by minimal progress and would just talk about eating and nutrition with dd. When dd starting seeing a clinical psychologist and a psychiatric nurse for her OCD, they both looked at her and immediately said she was malnourished. So, months later, here we are . If you have made it this far, thanks for listening!

[amo_mea_filiis.]

My son does not have OCD nor has he ever been diagnosed FTT, so this could be totally pointless.

 

It doesn't address the OCD surrounding food, but have you tried liquid supplements? Like pediasmart, pediasure, ensure? If she would drink enough of these, you could focus on the OCD and not really on the scale.

 

Will she help cook and prepare foods?

 

What do they plan on doing in the hospital? Will it be a focus on the food or the OCD?

[Acorn]

What is in place to treat the OCD now? How would hospitalization change that plan?

[Mergath]

What meds is she on to treat the OCD?

[I.Dup.]

I'm sorry. I really think she needs to be treated with meds before this gets worse. My eating disorder started similarly to your dd...I spent years being afraid of food, afraid of getting sick, afraid of contaminated food. Then after a severe trauma it turned into full-blown anorexia when I was 16. There was just a perfect storm of factors. Maybe if I'd gotten on medication sooner it would have helped me be able to cope better.

 

I was hospitalized once for 60 days. I was put into multiple treatment centers. They never helped, I'm sorry to say. I have needed medication though, and still do to manage my depression/stress tendencies.

[LibraryLover]

Some children's hospitals have day (outpatient) programs for EDs. The child attends school and counseling at the hospital, but goes home at night. I don't know how successful that is, but I have known a child who had participated in such a program, and is currently doing well at age 22. I know they did do OCD/anxiety meds as well.

[Punks in Ontario]

My DD was hospitalized for most of the year she was 16-17 for anorexia. She was in a mental health unit that specialized in eating disorders but had other dx in the unit. Some of the kids were young. At the time of first admission, dd was put on a medical unit because there were fears of heart issues from the weight loss. THIS WAS WITH MEDICAL MONITERING PRIOR TO ADMISSION. Because your dd is much younger and her eating issues may have different origins, my experiences will be different from yours.

 

A few random observations:

*when dds weight was low, she had slower processing speeds and could not think very rationally. IOW low weight =poor thinking/reasoning

*it was easier to get "stuck" when she was low weight. Obsessing or getting stuck emotionally was easy

*as dds weight increased, it was easier to keep gaining. Thinking and reasoning was better

*on the unit staff was skilled at dealing with a range of mental health issues. OCD was common on the unit

*staff may be able to help dd process OCD issues while increasing body weight

*staff in dd unit were effective and able to deal compassionately with all the kids

 

Q. Would it be possible to have dd tour the unit and plan an admission right after Christmas?

It sounds like the OCD needs to be addressed in tandem with the eating issues.

 

I'm sure your dd will be afraid to be admitted, but it could very easily be the road to getting the help she needs rather than bumping along barely maintaining. Hugs to both of you. The 2 years we dealt with this were the worst 2 years of my life. Nearly 10 years later, dd still has anxiety issues, but she's no longer controlled by the eating disorder.ETA dd is now 26 and doesn't actually appear on my sig.

[houseofkids&pets]

Thank you for the quick responses. Dd is taking meds to help with the anxiety (sertraline, the generic zoloft). The hospitalization would deal with all of her issues, but the main focus would be to get her weight up to the 5th percentile, since she is not even on the growth chart. The doctor explained that if she wouldn't/couldn't eat enough, she would get the extra nutrition through a tube down her nose.

 

Right now, she has to drink 3 ensure plus a day, which totals 1050 calories. In addition, she is supposed to eat 1500 cal a day, which she struggles to do. When we started actually measuring her food amounts and tracking calories, we were shocked to learn that she was probably eating about 600 calories a day. She is really good at eating slowly and pushing food around on her plate to look like she ate a meal. She just hates the whole process of food and eating. However, she wants to gain weight, does not like looking so skinny, and does not purge.

 

I will look into the possibility of out patient treatment (thanks for that idea!!), but the doctors have never mentioned that as an option. It breaks my heart to see her struggle and I know that dh just doesn't understand why she just won't eat more.

[Punks in Ontario]

Another thought: ED are notorious for trying to trick you into thinking they're eating more than they are. They can hide food, purge, eat and spit and all sorts of other things to avoid actually ingesting the food. One girl would rub the butter in her hair hoping staff wouldn't notice. And yes ensure's can also be spilled, poured into kleenex, down the drain when no one's looking etc. I'm not saying that your dd is doing this, but I'd be more surprised if she wasn't than if she was.

 

As an inpatient she would have carefully supervised meals with people who are used to all these methods, and who will monitor the washrooms for a time after meals to avoid purging. At home, I would monitor too, but with other children and phones ringing, it was never as effective.

 

I hope you can get the help you need without admission since it's certainly less traumatic, but please don't rule out a brief stay to get things under control. :grouphug:

[treestarfae]

Can you put her in cooking classes and go over nutritional curriculum with her? If she's OCD maybe a constant emphasis of vitamins and amino acids will help her choose foods. I would seriously schedule the entire day around nutrition, cooking, food shopping, exercise. Immersion in health from her own family, get everyone on board.

 

http://www.christianbook.com/health-quest-lifepac-nutrition-food-groups/9781580959254/pd/959253

[dsmith]

We came very close to hospitalizing ds when he was in 2nd grade. He has sensory issues, but at that time were not aware of his exact issues. He was always a nervous child, and I remember some of the fears he had at that age. Any mention of poison would set him off, seeing ant traps at my mom's house, hearing about food poisoning, etc... His general anxiety and his sensory issues, combined with a lesson in school about choking, made him afraid to eat anything besides vanilla pudding. At his worst, he was convinced that he couldn't swallow anything, even the saliva in his mouth. We found a speech/language pathologist who specialized in feeding/eating issues. She treated him as she would have treated him if he had a physical reason for having swallowing trouble, combined with working on sensory issues. We also put him on Prozac and an anti-psychotic when his anxiety got way beyond general anxiety. The anti-psychotic had the additional benefit of making him really hungry. Of course, over time that has caused weight gain. I forget now what percentage of body weight he lost before his treatments started working, but he was about 2 percentage points away from the doctor putting him in the hospital. Ds had other issues besides the eating problems at that time. I would say that he had what some would consider a nervous breakdown. I don't know how else to describe it.

[Hunter]

She is not eligible for group outpatient treatment at such a low body weight. There are even some inpatient treatments she will not be eligible for, because of the severe OCD. But she is eligible for a one-on-one outpatient dietician that specializes in eating disorders.

 

Your daughter's eating disorder is atypical, so general statistics don't apply, but in general what few people understand (even many health care professionals), is that the suicide rate for anorexia is MUCH higher than the starvation risk. Insurance companies usually only pay for centers that produce fast weight gains, leading to many gentler centers having to close for lack of patients and funding. This raises the suicide rate, and is why the total fatality rate is high.

 

You are right to be leery of hospitalization. Atypical cases based on an underlying condition are often discharged in worse shape than they entered. I'm not saying you shouldn't hospitalize, but you need to explore all your options and not rush into it. OCD does get worse the lower the weight falls, though. So it's it's a catch 22. Also know that you have options where your daughter is hospitalized, and that you need to seriously check out the individual centers, and how they deal with OCD and atypical cases. Many centers are very heavy handed with a one-size-fits all treatment plan. Many centers do not allow parent input at all, and even severely restrict access to your child.

 

I'm sorry your family is going through this. Just be careful what you get yourselves into, and know that you often have more rights than people are informing you of. A lot of what they say is a bluff to get you to do what is best for THEM.

[houseofkids&pets]

Thanks for the responses. I definitely need to find out more before we agree to a hospitalization. Hunter, you have expressed my fears. I worry that a hospital stay will do more harm than good to my dd both mentally and emotionally. Her next weigh in is Thursday afternoon. I pray that she gained at least a whole pound.

[brookspr]

It might be a long shot, but have you ever heard of PANDAS? It stands for pediatric autoimmune neuropsychiatric disease associated with streptococcal infection. The strep virus attacks part of the persons brain and causes neurological problems. A friend of mine's daughter has it and it caused her severe OCD symptoms practically overnight after a two week illness that had not been attributed to strep at the time. I've done some research on the disease and I've read where in older kids it can cause OCD that manifests itself thru eating disorders. It is somewhat treatable if you give antibiotics to kill the strep virus, but it can return if the child is exposed to strep again. It is also a controversial disease as it was "discovered" <10 years ago and many pediatricians do not believe it actually exists as a separate entity from OCD. The book Saving Sammy was written by a mother who's son had the disease.

 

Recently there was alot of online activity in the PANDAS community because a girl in MA had been taken from her parents custody when they tried to have her admitted for a severe eating disorder due to PANDAS. The hospital did not apparently believe the girl had PANDAS and treated her in a fashion that made the problem worse. They would not relinquish custody to the parents because they felt they did not have her best interest at heart. I don't know what ever happened, but the PANDAS parents are very dedicated to making sure the public is informed about the disease.

 

Hope this helps.

[besroma]

:grouphug: :grouphug:

[Hunter]

I also wanted to say that weight gains are never steady, and to expect them to be, is CRAZY on the part of staff. There are so many factors that affect our weight, that have NOTHING to do with the amount of fat on our bodies. Never mind the regular fluid retention and dehydration that ANYONE goes through, people who suddenly increase their calorie intake usually get at least mild cases of refeeding syndrome that causes even greater than normal fluid fluctuations.

 

I do NOT believe that sudden weight gains are healthy. They are as stressful on the body as weight loss and sometimes even more so. A 1/2 pound a week is the recommended outpatient gain by many dietitians.

 

I've been underweight many times, sometimes severely so, for a multiple number of reasons. Only one of the times was from Anorexia. We are all vulnerable to developing Anorexia if enough factors happen, and as someone above called it the "perfect storm". Even if your daughter doesn't have anorexia now, this episode will make her more vulnerable to the disease later. This isn't a problem that will get "fixed" by an inpatient stay.

 

All too often, atypical cases get less care instead of better care. You will hear, "but we have to do SOMETHING" when really pathetic and illogical treatments are the only ones being offered. And the sicker the person gets, the fewer good options are offered. Doing "something" can make a bad situation a LOT worse. And staff reaction is often to then offer you an even worse option to deal with that.

 

I do not believe in neglecting or enabling eating disorders, but sometimes refusing treatment IS the responsible option. Only you can make that call.

 

I'm now about 5 pounds below ideal body weight with my boots and coat on and with a full bladder. It's a daily battle to keep this weight on, not just from the Anorexia, but from the pain of ulcers and IBS, the amount of exercise I get, and the lack of money I have for food, and other PTSD factors. But I put all this weight on by myself without any "help" after I gave up on their pathetic and very limited options. I spent a year and a half excluded from any PTSD help because I was too underweight to qualify, even though everyone agreed that the PTSD was THE major factor causing the anorexia. And all the decent ED treatment centers refused me treatment because my PTSD and seizures were too severe. And all the failed intakes and battling with people who wanted to just do "something" was making the PTSD and seizures worse and worse, and I developed new symptoms of stroke like speech problems.

 

I got the weight on by myself, hoping to qualify for PTSD treatment, but instead the sudden weight gain sent me into a PTSD crisis, and I found out I STILL didn't qualify for PTSD services because I had done the weight gain on my own, so it just got relabeled as eating disorder NOS. I was told I'd have to wait 6 months at least for people to "believe me". In the mean time with the PTSD and seizures so bad, and no speech to explain what was happening to onlookers, I ended out in the ER a few times, and don't know how it didn't happen more. Doctors who wanted to clear their ER just sectioned me and shuttled me off to the WORST holes in the wall that hadn't even been told I had PTSD or an untreatable seizure disorder, so when I got there they just held me for 24 hours and let me go worse than I arrived. The last place was a horror show I will never forget, and may never recover from.

 

I just quit everything. I had to slowly wean myself off services by giving them NO information other than what they would court order me to get. I let them eyeball me with promises of maybe more next time. Instead they gradually got less and less from me, until they knew so little about me, they had nothing to court order me for. I haven't let anyone weigh me or touch me in a year.

 

I HATE it that I have to "homeschool" my recovery. But if I want to survive, I've learned the hard way that is what I'm going to have to do. Schools and hospitals are a godsend for the people they work for. Other of us just cannot survive there, never mind get help there.

 

I'm not saying you shouldn't hospitalize your daughter. I'm just saying to keep your eyes open and not to trust anyone unless they EARN your trust. And do not underestimate how CRAZY the professionals can and will act. I never would have believed it, if I hadn't of lived it, and met other people living it. And the whole weight in process is one of the CRAZIEST things of all. But as one doctor said, "But it's all we have, so we have to go with it". Is she doing a johnny weight at least, or are they not even factoring in the difference in weight of her clothing?

 

You don't have to answer these online. I'm just throwing out important factors that are considered in deciding hospitalization. How is her heart rate? What is her body temperature? How bad is the lanugo, if any? How much is she isolating? You have already said the OCD is quite bad.

 

I'm just really sorry you are dealing with this and especially at Christmas. If her heart rate isn't too low and there is not another immediate medical crisis, I'd wait. But everyone else is waiting too, so...choice of beds at certain centers are empty now that will be full in January. There is THAT to consider.

 

Also, just because the doctor THINKS the center will take her, doesn't mean it will. Atypical cases often don't make it through the intake process. These centers cherry pick who will bring in money without requiring too much work, and will leave making the recovery statistics look good to the insurance companies. So even if you say "yes" don't be surprised if you find out your daughter is not admitted after all.

 

Good luck!

[itsheresomewhere]

Just a thought while you are figuring this out. What about having someone come in the home that deals with OCD and helps her learn how to cope and make things safe for her? DNephew had severe and mean severe OCD and they had a private therapist help at home show him coping systems. He was on prozac and that helped with the in home therapy compared to just office therapy.