[momraine]

He was never in an actual eating disorder program. We signed him up for one and then when we arrived they switched him to a behavioral program. He was a little angel there. He only got in trouble once and that was just to see if they would follow through. They did not even address eating. The advice I got to keep feeing him came from a feeding clinic. It's a little different than an eating disorder clinic. It's more for kids who don't eat becuase they had tubes when they were little and so never learned. My friend had her daughter enrolled and while she was there she called me and one of thier people was able to talk to me. I am not sure of the origin of the eating problems for him. From his records he was fine until right after he turned five. The records indicate that it started as an attempt to get attention and then it became a game between him and two girls. The three of them were the most advanced of the kids in thier unit. One girl now has a tube, all three ended up hospitalized. They saw a psychologist and they had St. Nick talk to them. The problems he has seem to be that he can eat when he wants to. The deal is that when he gets stressed (any change in schedule or dad out of town, etc) he will stop eating, and then it's really hard for him to get started back up once things are back to normal. It becomes habit. We have tried to give him something else to do when he is stressed, but that has not worked. So far the only thing that will jump start him back to eating is the forcing him. The problem is that right now I can't do that with him having to get up early for school. I simply don't have the time to devote to him that I did this summer when he finally started to gain weight. I have found an eating disorder clinic that will take him. But I really think that we need to deal with the attachment and trauma and oppositional issues first. Then if the eating is still an issue, we can try the eating disorder program. I don't think the eating disorder clinic would work right now. It's in another state and they only have the parents involved for one week of the two months the child is there. I don't think this would help with attachment. It might help with some of his other issues, but I am thinking him being away that long would hurt attachment. What do you guys think? I will also ask the psychiatrist next week.

[lucyjoy]

The attachment disorder has to be treated first as that may very well be his food issue. 5 seems young for the type of food issue contest or whatever in Poland. Seems to me there may be a missing piece of truama there that he may not be able to tell you yet.

If he can eat breakfast at school, let them deal with that. If not, then he eats or he doesn't. If he can eat when he's not stressed then address the stress. He sits with the family at meals and when eating time is over, it's over. Should he want a snack later, in his situation, I'd give it.

Have you found an attachment therapist of is that what you are waiting to hear about? I know it's expensive but in the long run well worth it.

And I am sure it is very irritating for me to give you unasked for advice. I've seen a lot of odd things-had a respite kid who could hold her urine for 30 hours and did so to drive her doctor mother insane. There are things we can and cannot control-eating, elimination, and puking are 3.

[momraine]

Actually I value your advice. The other night dh was asking about the two of us getting away, but relatives won't keep M. I told him the only person I knew who could handle him and not be conned lived in some other state and was someone I had never met! I was talking about you lucy.
He has never, ever asked for a snack, even when he is good, he never wants snacks or desserts, and like if I leave him with dh he will go all day without eating, even when he has been doing good. It will never occur to him to ask for food. I have been unable to find anything in the records that would explain the sudden stopping of eating and the fact that three children stopped at the same time. There were a couple of incidents that might have made it worse, but all were after he had stopped eating. He was hospitalized for the eating once and then later for surgery to move his testicles to where they were supposed to be. Those both happened after though. Also when he first heard about us, it was well after he had stopped eating. At least six months if not longer from what I can tell. I do know that the nun he was close to first told him we were black and then when we actually filed the paperwork she threw a tantrum about her son being stolen (this happened with him in her arms) then she was sent away and then he was sent to an adult facility. I would suspect all of those things of triggering it, but he had already been not eating at that time for several months and had already been hospitalized once. When he stopped eating at first was before we had even heard of him. He ate well for the first few weeks we had him. He also ate in the adult facility, but he was only there two months before we got him. He won't eat breakfast at school. His aid is not there and he will just refuse to go to the cafeteria, he will go instead to the auditorium where they have morning assembly and wait. From what I could find out about the beginnings of this they were short handed and many of the kids in his unit had to be tube or spoon fed. M and his two friends were able to feed themselves. One time one of them was not feeling well and did not eat. The response from the caregivers was lots of attention, promises of extra priveleges or treats, etc.
The therapist the psychiatrist is trying to get us into does specialize in attachment and other issues. I have contacted every attachment therapist in the state. The ones that are taking new patients either didn't sound right to me, did not take insurance, had long waiting lists or wanted me to make a committment that I could not make with other children in the house. (ex, taking him to therapy several times a week and me attending a parenting class twice a week, all a three hour one way drive from here.). One would give me no references or other documentation, but wanted to move in with us for an indefinate period of time. Another insisted the children participate in this camp thing, where they did lots of physical stuff like rock climbing that you can't do with one arm and no legs. So we are hoping that the therapist she found will take him. She said this person normally only works with teens but not younger kids, but she is going to try to talk her into taking him. She also knows another one that is not taking new patients, but she thinks maybe she can talk him into it. He does not take any insurance though. So I am not sure how we will pay for it. Probably by going into debt.

[chickymum]

I think the hard part here is that for so many control issues we somehow find a way to make the child feel in control. EG if a child does not want to get dressed in the morning it makes you mad. They have control until you let them go to school in PJ's. Then they have lost because they just wanted a fight that they did not get and they feel silly in their PJ's.

This issue is different because if you did take away the control battle part then he could become dangerously hurt before he realizes. Severly unattached children will die before they give in. Just like the child that will go all the way to school in PJ's before he realizes Mom is not bluffing.

Does this make any sense?

[momraine]

I have tried to do things to give him control, like letting him choose the food. I went to the store with him, and just him and let him choose stuff. One thing he chose was the little idividual packs of manderin oranges. That night I gave him some with dinner to be sure he liked them. He raved about them and asked me to put them in his lunch, asked me again in the morning if they were in his lunch. When he got home that day it was still in the lunch box. He said he didn't have time to eat it, but to please put it in the lunch box the next day. The third day of this the aid called me to tell me that he was telling her he hated those things and he didn't know why I was putting them in his lunch box. He also sometimes throws the biggest fits about eating foods he likes, or when I have let him choose what to eat. I kept thinking that giving him more control would help, but it doesn't it seems to make him worse. Which really confuses me!

[momtutu]

Just a thought from a mom with a child who has a feeding tube. (not attachment related) How would you feel about having a feeding tube placed? The control issues might lessen, although he could still vomit. You no longer would have to force him to "eat". Later the tube could be removed, when the attachment issues have subsided.
Lisa

[momraine]

I have actually asked for one, but the docs said no. I thought it would be easier to just concentrate on attachment and stuff for a while, but they are afraid he would pull it out. So, so far they won't do it. I am thinking of leaving the eating alone for a while and maybe if I let him loose enough weight they will do it.

[lucyjoy]

Just serve his food at meal time and snack time and when times up remove it and say NOTHING. Right now he knows this makes you crazy. As long as he knows that, his need for control won't let him see anything else. If he pukes, hand him cleaning supplies.

Spend at least 30 minutes a day in the rocking chair. Don't talk about food except in the concept of reframing. Sing to him, talk to him about how his life would have been if you'd have held him in your arms the day he was born and build from there.

Will he let you bottle feed him? I know he's too old for that but since he likes being young and cute, that might be a way to sneak some milk of juice in now and then.

Keep a journal of what he is served for meals and snacks, times etc and what he chooses to eat. When you get therapy in place or talk with doctors about feeding tubes or whatever, take the journal with you.

This won't be a quick fix, but a long process to trusting.

[momraine]

I will try that. he won't let me do the bottle. I tried that. He hates rocking and usually fights me the whole time. For a while I got up early and did it when he was still half asleep. However, right now we are getting up at 4:30 just to get breakfast in, get dressed and get on the bus by 5:45. But I will try.

[athikers]

oh... food issues.

I understand.

[SuzBerg]

Lorraine - Have the doctors ever mentioned trying an appetite stimulant? I'm wondering if that would maybe help him feel "hungry" since you said he never feels that and that might be one of the reasons he doesn't eat. Em was on Megestrol Acetate after her last surgery for about 4 months it is NOT a long term solution (at least for her it wasn't) but it definatley made her hungry and she ate a TON, when she was first on it. Of course, now that she's off it she's back to eating like a little birdie but she still eats more than she did before. It's just a suggestion.

I am so sorry you are having these eating issues with M. When E first came to us she could make herself throw-up, she wouldn't eat anything and then because of her health issues it's almost impossible for her to gain weight anyway. The feeding clinic I went to was useless (the suggested feeding her high calorie foods and buying her the foods she liked - well duh I didn't need an OT, ST and RN to tell me THAT).

I don't have any other advice - just cyberhugs!

[jessnboys]

I think your son and mine could be twins! When M had a feeding tube, he would pull it out. We were having it replaced 2X week. It honestly didn't matter what type we used ( we went through them all). When Gonzaga University starts, I can get a hold of the behaviorist(however it's spelled) we used to see if there is a similiar program in your area. It was time consuming, but we managed after a few months. It came down to holding the bite of food to his mouth until he took it. I had food everywhere and cried after each meal at first. We did a time limit on meals. It's different from a lot of the force feeding methods b/c you aren't putting the food in the mouth. He has to take it off the spoon. M fell asleep we did one meal so long. When he woke up, he went into the chair w/ the same bite. He took the bite and we quit for that meal. The feeding clinic in my area told me the problem was me, since he ate for the speech therepist while in the hospital ( no manipulation there, lol). Please know you are not alone! Feeding issues are the worst, IMO b/c you really can't do much. In M's case, it's a control issue. He can't control his meds, his behaviors (a lot of the time), his enviroment but he could control what stays in his mouth. We still have some vomiting and he wont' eat occasionally still. He knows they will call or email me and I mean business (see above story, lol) so he shapes up fairly quickly. Feel free to pm me if you ever want to talk.

[momraine]

He seems to be doing better today. Dh says he thinks it takes him two weeks of refusing to eat after every change in schedule and if I stay firm and don't let him get away with anything during those two weeks he gets back to normal. If I ignore it lasts longer. I think he is right. He seems to see it more clearly since he escapes to work and business trips. Those two weeks seem like forever to me! He is on something that is supposed to increase his appetite and also maybe help with the anxiety over the changes. Emeron something like that. (it's in the other room and if I leave the computer a teen will jump on it!) I think it does work some, of course when he was mad he made sure to throw that up. But it's a melting tab so if I made sure to give it to him on an empty stomach he could not throw up! The melting keeps him from holding it in his cheek. I think it does work on his appetite, because when I put foods he likes in front of him when he is in that mood, he usually just cries, but now he screams and is furious. We think it's cause he really, really wants to eat it and it makes him mad. I also tried giving him a box of snacks he could have anytime. He ate one or two things out of it the first few days, but has not touched it since. The report from the phsychologist in Poland says that during one session she had a peice of cake on the table and he stared at it the entire time, the whole time insisting he was not hungry and he did not want anything to eat, but would not take his eyes off the cake. So I think he has to feel some hunger, he just can get around it. I guess I have a hard time relating since I eat more when I am stressed. (if you saw me that would be very clear, LOL) The doctors are maninly concerned because he is doing permanant damage to his body.

[AmyAnne]

Mine won't do a bottle either, but he will do a sports bottle with milk in it. I usually put chocolate milk in it, since it's sweeter, and he doesn't like caramel (the usual attachment-building sweet)

Another one we do is the M&M or the Skittles Game. I have Austin close his eyes and I put an M&M in his mouth (this works best with the Christmas ones that only come in 3 colors). He then has to guess what color it by chewing and swallowing it. It's a fun way for me to be allowed to feed him. (He likes doing this with fruit candy, too, since he can taste a difference and is RIGHT more often)

[momraine]

He won't eat or drink anything while I am holding him. I tried a spider man sippy cup. (I learned he can't suck very well as he could get nothing out of the cup with the valve) When I took the valve out he would refuse to swallow so it just made a mess. I have tried feeding him candy and he refuses to open his mouth or spits it out. Remember he hates eating or drinking and will only do the minimum to survive and that is grudgingly. Eating or drinking is always a source of stress for him even when he is doing well. When he is at his best he will refuse dessert or snacks most of the time, even if he loves something he won't want seconds. When he is doing well, he will only eat the minimum required. Yesterday I was gone with dd a good part of the day. While I was gone he did not eat a single thing or drink anything. Dh and the boys decided to wait and see if he would ask. One son asked him if he was hungry or thirsty and he said no. There are juices and snacks within his reach that he is allowed to have anytime. He did not help himself. When I got home his voice was very raspy cause he was so thirsty. I did not ask him, simply informed him it was dinner time and put him in his chair and gave him food. I tried to rock him later but he fought me. It didn't feel right to force him to stay there in my arms, when he was fighting with everything he had to get down. Should I have forced him? I did get him to sit for a while in my lap and look at halloween costumes on line.