bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 08, 2007 at 02:33 PM | Reply with quote | #1 |
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Last month, my 11-year old son was diagnosed with Anorexia. 6 months ago he was a normal, happy child. I really feel like our world has been turned upside down.
I'm not sure where to even start -- so I'll post a link to my blog:
http://nourishingmyson.blogspot.com
I've searched for a support forum like this. I'm so glad to have found you. However, it seems like most of you are dealing with older girls. I'm wondering about any experiences that you are having with very young boys and anorexia. What is working? What is not? What is different? Please help!
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Kiddo
Registered: July 31, 2007
Posts: 68
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| | Nov 08, 2007 at 05:53 PM | Reply with quote | #2 |
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Hi Bluebooks
I am so sorry to hear of what you are going through but I am glad that you have found this forum. To me, it is invaluable. You will find so much support here from genuine loving and caring people.
I have a 12 year old son and we have been going through this since June. I think a lot of the people here have girls but there are also some boys and although there are a few differences I really think the fundamentals are the same.
I am no expert on this - just another parent, however I can tell you that what works is insisting on full nutrition together with a lot of love and support and endurance. What also works is seperating your son from his illness.
What doesnt work is blaming yourself or your family dynamics or being held hostage by the anorexia. What also doesnt work is a doctor who insinuates that this has happened because of something you have done, or the way you parent your child. Or a doctor that does not see full nutrtion as the way forward.
How is your son doing? Is he eating? What do your doctors suggest?
This is hard hard work and there are many people on this site that can probably give you a lot of better advice. I just wanted to post this so that you know you are not alone with a son with anorexia.
Huggs
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ms
Mentor
Registered: Aug 09, 2007
Posts: 675
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| | Nov 08, 2007 at 06:33 PM | Reply with quote | #3 |
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Welcome blue,
I do not have a son w/ anorexia, but as Kiddo said so many things are similar across the board.
What is the same:
We are all loving parent who will stop at nothing to help our children recover and lead happy lives.
Our otherwise "normal" lives have been rocked to the core.
We feel isolated and that nobody understands what we are going through.
We have had strains put on every aspect of our lives including our jobs, our relationships with immediate family members and our financial situations.
We are heartbroken and feel guilty at times because our children feel so badly about themselves and life in general.
We are confused because our children are broken and we can't "fix" them or their problems like we have been able to in the past
We are frustrated because we can not find the right Dr's, therapists, who will stop blaming our children and us their parents for their ED, and actually want to seperate us from our children.
So- since we have so many likenesses, we mine as well support each other- and be better equipped to help our children, because they need us to not be accusing, or judgemental of their actions, but rule w/ entle firmness, love and compassion. You have come to the right place. ms
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 08, 2007 at 07:32 PM | Reply with quote | #4 |
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It's so good to find you! I have been so buoyed up -- just by finding someone else out there that knows what I'm going through.
I can tell that I have so much to learn.
Right now we are insisting on 3 meals plus 3 snacks. I place the food in front of my son for breakfast and dinner. I monitor everything he eats. For the most part he will eat what I give him. But I have to watch -- because if I don't he'll just eat part of his breakfast or will skip a snack. It's all very subtle.
In some ways the hardest part right now is before and after meals. The drama building up to eating and then the guilt afterwards. He'll curl up on his bed and cry for hours. We will try to help him by talking about it -- but he often wants to talk about calories. I finally told him we could talk about anything else but food. I felt like we were "enabling" his obsession.
Mornings are also hard because he usually still has guilt from the night before. He also stays up late at night, is neglecting his studies, is isolating himself from his friends and is late for school every day.
What suggestions do you have for me?
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Maria
Mentor
Registered: July 31, 2007
Posts: 2,613
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| | Nov 08, 2007 at 08:38 PM | Reply with quote | #5 |
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Blue:
My d is 11 and was DX at 9. She has been weight restored for 3 months but still has AN thoughts quite often, though she eats everything we put in front of her.
Do you have a medical DX of AN from your Peds? I would suggest that you enlist the help of your Peds and the school. Get a written diagnosis from the Peds, go to the guidance counselor at school and ask for a 504. Have certain guidelines as to the acomodations that you need for your s while he is going through this illness. From what you are saying, being allowed to be late (no tardies) would be an accomodation. You may need to have academic accomodations as well. You may want to look up the thread about 504s or "What you wish your child's school knew".. for a very detailed look at how me and others went about this.
Finally, chug all academic expectations to the wind until your s is weight restored and more mentally stable. This is the first year that my d is not in the honor roll and we pulled her out of the "gifted" Math program because it was too much. His health and recovery should be your # 1 priority and everything else takes second seat to that. So, just ease off the pressure regarding school and concentrate on getting him well. People here often compare this illness with cancer. You wouldn't worry about his grades if he was in treatment for cancer. Thinking of you.....
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homemakerx2
Registered: Oct 16, 2007
Posts: 135
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| | Nov 08, 2007 at 11:31 PM | Reply with quote | #6 |
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I am so sorry to hear about your son, I too have a 12 yr old son that has A, he was diagnosed 6 mo. ago at age 11, we are still going through hell, and you are right there is not a lot of info for young boys, even on this sight there are only a few with boys, I have even written quite a few shows looking for insight into boys, because even though the disease is the same for both genders, there is not much research out there on boys. I wish I had some advice but have none, we feel like we are in a movei of ground hogs day, when it is the same thing over and over, we continue to try and feed our son, and it is a battle over and over. just keep trying. this disease is horrible. |
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Mari
Mentor
Registered: July 31, 2007
Posts: 289
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| | Nov 09, 2007 at 09:34 AM | Reply with quote | #7 |
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Bluebooks,
So sorry to hear about your son. It sounds like you are off to a solid start. 3 meals and 3 snacks and you must monitor because this disease will make your child behave in ways you might never have believe. It is the disease, however, and not your child. If you need help finding those high calorie recipes (like shakes and mega muggins) there is plenty advice here.
It must seem as if there is so little out there on boys, but several parents with young boys and younger girls post here. And there are so many similarities. My daughter (now 17, then 16) would feel terribly guilty for eating her meals and curl up on the bed and cry as well. I would not talk about food and calories. Try to distract him with things that used to interest him. New songs for his ipod or video games, whatever young boys like. I also helped arrange for outings with friends like movies, etc. This may be hard early on, but some time from now he may be ready for distraction.
If school is a struggle right now, can you consider keeping him home until things are smoother? A couple of weeks home might let you focus on getting those first crucial pounds on and get you through the roughest stuff.
Sending hugs and encouragement.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 09, 2007 at 02:06 PM | Reply with quote | #8 |
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You are all so wonderful! Your support means so much to me. I've cried twice now as I've gotten online and read your messages. I've just felt so alone. Thank you so much!
I also feel like we are stuck in "Ground Hog Day." That is a perfect analogy, homemakerx2.
Thanks all for ideas on distracting. We've previously limited all our children's time with tv, video games, and computer. I'd really like my son to go play -- so yesterday I told him no more "media time" (hoping he'd go outside). But instead he just moped around the house. Should I let him have unlimited media time right now as a distraction? Or should I still restrict his time?
Do you have an ongoing link for high calorie foods and recipes?
My son wants to talk all the time about being nervous about gaining weight. I don't want to shut him up by refusing to talk. So where is the line between talking and "enabling" the obsession with food. How do you handle this with your child? He get so upset and angry. But it sounds like this is normal for your kids. Right? What do you do with all that anger?
I'm trying to arrange some outings with friends but he is resistant. It's hard to see him isolate himself and then feel sad because he has no friends.
Also, what do you do with younger children? I have a 9-year old and an 18-month old (both boys). I think my 18-month old is fine. But my 9-year old has said that he doesn't get as much attention. He isn't demanding or disobedient -- but just sad. So much of our life is focused on our 11-year old son. How do you make sure that your other kids aren't negatively affected?
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Maria
Mentor
Registered: July 31, 2007
Posts: 2,613
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| | Nov 09, 2007 at 04:01 PM | Reply with quote | #9 |
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Blue, is you s underweight or is he now at a normal weight? How tall and how much does he weigh? If he is underweight then it is quite normal for the kids to isolate themselves, be depressed, anxious, etc. My d isolated herself completely when she was underweight. She wasn't interested in friends or social activities.
I would be careful to push him out too much right now while his thinking is so disordered. My d became a compulsive exerciser who would roll around on the floor screaming to go outside while I hid the keys to the outside doors. He may start picking up on exercise as a way to purge his calories if you stress him doing outside activities. I wouldn't force him to socialize with friends. Right now during the refeeding stage they are completely abnormal and obsessed with food thoughts and self-loathing.
Sibs are the toughest part of this illness. My 7 year old s babysat himself in front of the computer or play station for hours upon hours during the summer when we re-fed. He didn't get a lot of attention and acted up BIG TIME in response to this. You know, it is part of life. Again, if one child had another life threatening illness life would have to temporarily stop to save that one child. My h took our s out a lot and did special things with him as much as he could, especially on weekends. I also arranged for him to have friends over in the backyard or go to friends' houses.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 09, 2007 at 04:27 PM | Reply with quote | #10 |
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My son is about 4'11" and weighs 81 pounds. Our therapist said he is "fully anorexic -- but not as gaunt as some." We were very aware as he started AN behaviors last July/Aug -- including losing 20 pounds in 2 months. We intervened with his eating in October. So, he was only engaged in AN behaviors for about 2 1/2 months before we got help. He only lost two pounds after we took responsibility for his food (low weight was 80.1 lbs). But he has not gained any weight either.
I've been wondering what an appropriate weight would be to aim for. However, I just found a Child/Teen BMI Calculator. His BMI is 16.4 which they call a "healthy weight." That seems crazy to me. Here is the link: http://apps.nccd.cdc.gov/dnpabmi/calculator.aspx
It seems that I would want his weight to be a similar percentage as his height. He is in the 66 percentile for height. Shouldn't he be about the same for weight -- which would be about 92 pounds (bmi 18.6)? His weight back in July was 104 pounds, which was a 21.7 bmi. This same chart (linked above) shows this weight as being "at risk of becoming overweight."
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 09, 2007 at 04:38 PM | Reply with quote | #11 |
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bb,
Those calculators are flawed, especially when it comes to eating disorders.
Here is what the leading eating disorder specialists I respect have told me. Don't compare your child to other kids, or to population averages. Compare him to himself. The way to do this is get his growth chart since early childhood. Look to see where he would have been - height and weight - if he'd continued since then on the same path.
In other words, if he was 80th percentile for weight before but is now 50th, something is wrong. If he isn't at a similar height percentile for his age, something is wrong.
You can do this charting with your doctor or chart it yourself. Here's an explanation:
http://eatingwithyouranorexic.blogspot.com/2007/05/how-do-you-calculate-target-weight.html
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Maria
Mentor
Registered: July 31, 2007
Posts: 2,613
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| | Nov 09, 2007 at 05:41 PM | Reply with quote | #12 |
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Blue:
My d never lost weight. She simply grew and her weight stayed the same. However, at 4,11 - like your son - she was also at 80/81 lbs and it was devastating to her mental and emotional well being. She had to get to 95 lbs before she started behaving more "normally". Unfortunately, she is growing super fast - currently at 5 1/2 inches - so we are constantly playing catch up with her weight. She is 98 lbs right now but I aim to get her to about 103.
I think that weight is way too low for your s, especially because he had a 20 lb loss that triggered his AN.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 09, 2007 at 05:51 PM | Reply with quote | #13 |
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My son has never been super skinny before. He has always been in the 50 to 75% range.
Thanks for the information on the calculators.
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Mari
Mentor
Registered: July 31, 2007
Posts: 289
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| | Nov 09, 2007 at 07:48 PM | Reply with quote | #14 |
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bb,
Under Popular Threads at the top of the forum are lots of recipes. Think heavy cream and milkshakes, Haagen Daz.. Carnation Instant Breakfast--at least two of these a day. The banana nut muffins are great too.
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Shawn
Mentor
Registered: Aug 04, 2007
Posts: 403
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| | Nov 09, 2007 at 08:59 PM | Reply with quote | #15 |
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Dear Bluebooks.
This is such a hard time, but you will get your son back, and he will get his life back.
However, you must help him regain his weight as quickly as you can. He will continue to be miserable, isolated, obsessed about food, and unable to sleep until his brain and body are nourished again. He is acting this way because he is starving. Only he can not see that. I was suprised to read that he eats everything you give him---if that is so you are fortunate indeed. Many of us have met with tremendous sneakiness, resistance and violence as we refeed our children. Are you certain that he is eating everything? This illness makes our children do things we never could have imagined, in terms of hiding food, avoiding food, and purging food. Watch him extremely carefully, and also watch him after meals to be sure he hasn't figured out a way to hide and then dispose of food---some of us don't allow our children to use the bathroom for a full hour after eating, so they can't throw up. Parents also make sure that children are not exercising unduly during the day---another way to burn calories and food.
If he truly is getting three meals and snacks down a day, and has not figured out a way to get rid of the food, then you will need to step up his calories. Most of us found that our children did not gain weight until they ate 3000 to 4000 calories a day. To jumpstart such a dramatic increase in their eating, many of us ended up having to pull our children out of school for at least a week to focus on refeeding. Children who resumed school often did so with dramatically simplified schedules and extracurricular schedules.
When my daughter was ill last year even simple assignments made her incredibly anxious and stressed---and she is normally a terrific confident student. She was unable to socialize---and she is normally a vibrant chatterbox. She sobbed every night and obsessed about food and calories(and, in her case, moving back to California). She had trouble sleeping yet woke up exhausted. You might want to look into medication for anxiety/and or depression, which did help our child. But what truly returned our daughter to herself was regaining almost 30 pounds she had lost. You must do whatever is necessary to start putting at least a pound or two on your son every week. He will not stop suffering until he regains substantial weight. Don't be fooled by his ED craziness---eating is medicine. When he starts sobbing about calories be sympathetic, but don't engage. Just tell him you know it's hard, that you love him too much to let him continue to suffer and starve, and that food is his medicine no matter what his ED is telling him.
As for your little children, I too worried about the impact of this illness on my youngest daughter. She WAS upset by it and definitely didn't get much attention for a while and acted out at preschool. But there was not much we could do---beyond talk to her about her sister's illness and assure her that in a family we all love each other and will help each other get better. Today both girls are happy and healthy and closer than ever. In your blog, you talk about feeling that the illness has "hijacked" your entire family. It has. But you are stronger than this terrorist. Because nobody loves your son more than you do. You will get your son back, and all of you will get your lives back.
Shawn |
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AJA
Registered: Aug 29, 2007
Posts: 8
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| | Nov 10, 2007 at 08:07 AM | Reply with quote | #16 |
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Glad you too found this site ! Hope it'll give you as much strength as it gave us with our 14 year old son.
Our boy is in recovery now but I sure do remember those tough first days. I really do think that getting him back to regular sleep was very important.
Sleep deprivation is tough for anyone & sure makes mornings difficult.After a good night's sleep the morning routine was easier & if he'd had a good breakfast ( with overnight glucose levels up ) the whole day was easier.
We also found it essential to get his mind off calories , the kitchen & over exercise. For us family board games , cards, walks & such were helpful & healing for all. Even reading aloud at night!
Our son is that little bit older but we did find it took several very frustrating weeks for the weight to start going on even though he was on a high calorie diet & not purging etc.
Hang in there !
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 10, 2007 at 11:47 AM | Reply with quote | #17 |
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Thanks everyone. Shawn, my son sounds just like your daughter. I guess I shouldn't say that he eats everything that I put in front of him. He does okay as long as it is predictable (i.e. he knows the calories). As long as the menu never changes then we do okay. Even a choice of toast or cereal sends him into space. For some reason, he is a little more flexible with dinner -- but has started to be less so.
We worked out a compromise with his therapist to help with the battles at dinner. We work out our month's menu together. I don't mind his choosing some of the main courses -- but I get to put the quantity in front of him. Our therapist told us that he would become more picky with time, but not to let him do that. [In fact, at this IP facility they don't "allow" people to be vegetarians. He said that is a common thing for AN to decide that they are vegetarian.]
This morning, however, was terrible. I made pancakes thinking I could "sneak" some calories/fat into them. He freaked out as soon as I said I had made pancakes. He didn't see me make them and I wouldn't let him see the mix or tell him which recipe I used. Pair this with the fact that he had a scout activity that he didn't want to go to. We were in utter meltdown for 45 minutes. Maybe I shouldn't have forced him to go to the scout activity. But I feel like he needs to get out and do things with other kids. Anyway, I did get him out the door (20 minutes late and with breakfast in hand). I gave instructions to the boys to make sure he finished his breakfast. He'll hate eating in front of them -- but he'll hate them bugging him worse.
If I let him, he would do absolutely nothing. He would sit and watch tv all day.
Good idea about not letting him go to the bathroom after eating -- he always does. I don't think he is doing anything and we've been paying attention. I hadn't thought about him hiding food. He is usually pretty honest -- but I've seen this disease alter his personality in other ways.
My son has a chance to take a test today to be placed in an accelerated 7th grade program. He wanted to take the test -- but started freaking out about it. I have to admit that I would like him to participate. This is because for so many years I saw him bored in regular classrooms. He was finally challenged when we moved him into an accelerated class (which he is still in). Now, like many of your children, the least little thing makes him completely stressed. We've discontinued every other extracurricular activity including sports and guitar. All he has left is scouts and school. I'm not pushing achievement in either right now. Still, I wonder if he'll get better by next year and then be bored in school again. Is it worth the stress the test would put on him today? Ultimately I guess I'll let him decide.
Also, I'm realizing that I've got to up his calories. He's only getting enough right now to barely maintain his weight. He's okay with most of what he eats because he knows that he continues to "maintain." I think bigger battles are coming as I increase the calories and the weight starts to come back on. So, we probably haven't even experienced the worse yet.
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 10, 2007 at 01:43 PM | Reply with quote | #18 |
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BB,
Here's an analogy that may help with the calories.
If he was asthmatic, and wasn't getting enough oxygen, it wouldn't help to get less oxygen than he needed in the first place. Every breath he would get weaker, less able to recover.
Every day your son is getting only enough calories not to lose weight means he is going backward - and his prognosis worsens. The amount he needs to eat is a medical decision, not a preference. His body needs to regain his lost weight AND get back whatever growth he would have had in the meantime. His brain can't stop sending eating disordered distortions until it knows the famine is over.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 10, 2007 at 05:54 PM | Reply with quote | #19 |
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Well, I increased his calories. Like I expected, things got a bit rough. But after 30 minutes (better than 45 this morning), he finally ate. Of course, he feels much better after he eats (unless the guilt is thick -- which for some reason it wasn't this afternoon).
I have some more questions:
Do you let your children choose any of their own menus?
What if they just want junk?
Thanks again to everyone!
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Lisa
Mentor
Registered: Aug 01, 2007
Posts: 610
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| | Nov 10, 2007 at 06:49 PM | Reply with quote | #20 |
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Hi Bluebooks,
Congratulations on your hard work! I have a 15 yo girl. She's 5 feet and got as low as 80 pounds. She's currently weight restored, but still with a lot of an thoughts. If they don't improve soon, I want to up her weight. To answer your questions, we sometimes gave our d very controlled choices. She could choose between two items. We then prepared it without her in the kitchen and served the amount we thought appropriate. We did this for breakfast and lunch, since everyone ate the same dinners. Also, before the an our family was a low-fat, low sugar vegetarian diet, with occasional yummy deserts. We loved eating, but it came with guidelines. During refeeding we changed our diet completely. We'll always be vegetarian, unless it interferes with health, because I've been that way for twenty-seven years for ethical reasons. However, we added cream (my favorite food now) into our diets and other calorie dense selections. Every night we have desert. I'm comfortable with our food selections, although my d is not and loves to point out that at one time I wouldn't have eaten this way. I just tell her that I've learned a lot since then.
This is an exhausting illness, please remember to take care of yourself, too.
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Shawn
Mentor
Registered: Aug 04, 2007
Posts: 403
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| | Nov 10, 2007 at 11:14 PM | Reply with quote | #21 |
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bluebooks,
great job!!!!!
Choice is cruel for children with anorexia. I don't really think of it as choice, in fact---I think of it as space for the ED to sneak right back in and torment my daughter. Any decision is not a real decision anyway when our children's minds are so malnourished, irrational,and dominated by anorexic thinking. One of my biggest frustrations with the more traditional treatment my daughter did receive in an eating disorders clinic was that she was expected---at 85 pounds, 5'4", 14-years of age, and crazy---to make up her own menu, balancing exchanges. That's as nuts as asking someone who just had a leg amputated to run.
Sometimes, especially after the first month or so, I would do what Lisa suggests--give my daughter a choice between two things. Chicken or fish tonight? chocolate or vanilla ice cream? EVERY SINGLE TIME she chose the option with the least calories---even though of course I had made sure before giving her the decision that they were fairly equal. But even if it was maybe 20 calories less that's the choice my daughter made.
You ask about junk food. Again, I would never allow an anorexic child to plan his own menu or meal. But if your son is asking to have food you consider "junk"---hallelujah!!!! Let him eat it, and celebrate! By the way, I'd be very careful about using the term "junk food", or "good" and "bad" food, or even "healthy" food. I don't mean to go too PC on you, but those often are expressions anorexic children use. I tell my daughter over and over that there is no such thing as good and bad, healthy or unhealthy, or even junk food. That all food is good---its just a question of balance.
Great work again! Keep it up,
Shawn |
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Christopher2
Registered: Nov 09, 2007
Posts: 22
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| | Nov 11, 2007 at 12:33 AM | Reply with quote | #22 |
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~Bluebooks~ In one of your upper post's you mentioned giving your s some "media time". I know that me and my w encourage our AN d to play PlayStation with our little d in the hope that it would distract her, she doesn't but it was an offer to her to take her mind off of food. I really really really discourage the use of the Internet though, and I don't know that when you mentioned the computer in "Media" time that your s was online. That is where our d got the Pro-AN rhetoric that urged her to hide her disease and different ideas of how to act normal around the family in her bid to lose weight.
We have been doing this for three and a half days and we have seen our d's attitude with food change slightly in a better direction. The first night we started re-feeding it was pretty bad but the important thing is she ate.
It will be a war sometimes, but you have to win the battles and eventually you will win the war. Have faith in your instincts, and your parental know how. You know how to feed them, and what they need. Just don't be afraid to do it. Don't leave s alone while he eats, that has worked really well for me and my w when our d eats. Don't let your s use the bathroom with the door closed, stand near the door so you can make sure your s isn't purging. I have a d and I as her father stand by the door (back to her) but she knows I am there. You can do it, and we are all here to support you.
Even though I have a d with AN and you have an s with AN we can help each other get through another day in our fight to save our babies.
We don't let our d have any say so in meals, or when they are. Myself and w plan her meals the night before (usually while we are on here), but we agree and pretty much shake on it and that is our resolve. We together fight the disease. We get up together each morning and prepare our d's breakfast for her while she is in the shower. D eats it an hour and a half before school, and if she ever didn't eat it, she wouldn't go to school. It's hard and we all know it, but you have us to lean on, lean all you want. We WILL be here for you.
As for recipes, there are tons of them our there. We have just used our past experience on what our d used to eat before AN. Our d used to eat two burrito's from Taco Bell, and she started eating one and then none, so tomorrow we will get her two and sit there with her while she eats them. Myself and w will talk about anything ie. the veterans day parade I was in or the new car for w, anything to put our voices in the air while she eats. Remember when they were babies and our voices would calm them, it still works. Maybe not all of the time but if it works once then you won that battle and he eats. Just remember to keep feeding him what you know he needs, it's his medicine.
W and I are sending you strength and energy, and the resolve to win your fight against AN.
Christopher2
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 11, 2007 at 12:35 AM | Reply with quote | #23 |
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I think he would eat only candy bars and ice cream if I let him. Should I seriously let him do this if he would eat it? He wants to replace 100 calories of cereal with 100 calories of a candy bar. He wanted lunch today to be just ice cream (I seriously doubt he would have been willing to eat enough -- but that's a different battle). Or is he just testing his limits?
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Tammy
Registered: Nov 07, 2007
Posts: 12
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| | Nov 11, 2007 at 01:21 AM | Reply with quote | #24 |
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I would let him eat some candy IN ADDITION TO what you plan for him to eat. D lets us know if she doesn't like something, if we think its her, and not ED talking, we take it into consideration. She still has to eat it at the time, but we might modify it the next time (while keeping the calories up). We made her an omelet as part of her breakfast one day which she didn't like, but she ate it. The next day we opted for two packets of oatmeal instead of the omelet (with added butter and sugar).
If you are going to give him ice cream I would suggest something like Breyers Swirls (480 calories per cup for the peanut butter) and a piece of fruit or some nuts.
Our d doesn't ask for sweets, but if she did I wouldn't let that be her whole meal. Maybe he could have two sandwiches for lunch (with lots of mayo, meat and cheese) AND some ice cream.
H and I plan our d's menu each evening and track it on an excel spreadsheet which we email back and forth. This helps us because it keeps us both on the same page and we always serve exactly what we decided because we know the calorie total we are aiming for.
I know this is going to be hard for him but it is so important. Our d has not put up much of a fight so far at all, so I don't know how hard it can be but there are many voices of experience here and they are very wise. Just listen to them and trust yourself.
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Christopher2
Registered: Nov 09, 2007
Posts: 22
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| | Nov 11, 2007 at 01:37 AM | Reply with quote | #25 |
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~Bluebooks~ I am Tammy's H, here is what today looked like for us , and we stuck to it and d went to bed with all of it in her. Sorry it looks bold and un-bold but I copied it from our excel spread sheet, so you would have something to think about when you plan your meals. I think that it is crucial to have a plan, and that the parents agree, and stick to the plan. I just want you to know that we are here for you and will track your post, and help you in anyway we can. Christopher2 10-Nov, Breakfast-Oatmeal 405, toast w/ butter and jam 277, Egg Nog 340 cup 1022 cals. Lunch- schlotzsk's Asian chicken wrap/ 505 V-8 Fusion 170 675 cals. Snack- Luna Bar 180 cals. Lunch- Tostada's home made x 2 859 w/V-8 fusion 170 1029 cals. Snack- Ensure (wal-mart brand) shake/banana 455 cals. Snack- yogurt w/, carnation w/ milk 420 cals. Total= 3781 for the day! |
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Malia
Mentor
Registered: July 31, 2007
Posts: 1,044
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| | Nov 11, 2007 at 01:47 AM | Reply with quote | #26 |
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Hi Bluebooks--
I think you have to find and insure a balance. While you don't want to make ice cream (or whatever) not okay, it's also really important that they get full nutrition. That doesn't mean merely full calories, that means full calories from a full range of foods.
If I were you, I'd plan meals around proteins and fats and add dense vegetables for variety. Also, plan nutritious desserts--fruit pies, whole milk and egg custards, etc--and if he wants more food, let him have it. Calories are important, but so are the nutrients that go in with them.
In other words, if he's eating decently and wants a Snickers, rejoice!
If he wants to replace eating decently with a Snickers, the answer is no.
Hope this helps.
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 11, 2007 at 02:10 AM | Reply with quote | #27 |
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bluebooks,
After reading some of your posts I thought I would chime in. Your s is 11. And he's starving. He needs you to rescue him from his disease. He needs full nutrition, full time until he can reach and sustain a healthy weight if he's going to have a chance for recovery.
Full nutrition means you decide. Candy bars are nice, but let him have these as a desert or part of a snack. "Magic plate" means he does not participate in shopping, menu planning, meal preparation or serving his food. That's your job. His agonizing job will be to eat.
(If the nutritionist or therapist disagrees, give them Dr. Lock's book "Treatment Manual for Anorexia Nervosa: A Family-Based Approach". Let them know you'll be happy to discuss this with them after they've read it.)
Your s needs to be relieved of responsibilities his ed won't allow him to approach in a healthy way. For example, our d could choose which flavor milkshake, but could not choose the ingredients, how much, or whether or not she would drink it. Apart from that, no other food or beverage was left up to choice. Her ed had decided she was a vegetarian. We stopped that because she had always eaten meat before ed came to live with us.
Scouts, tests for advanced academic opportunity--can wait. Right now the only thing that matters is giving him the "oxygen" as Laura puts it so well, that he needs to survive. It might help you to understand that when children go IP, they are put on dramatically limited activity. Our d spent 3 months in a wheelchair.
This disease has a cascading effect. The longer a child is malnourished and the more weight they loose the greater the medical complications. In a child as young as yours, even minor changes in electrolyte balance can cause significant cardiac and other systemic effects.
Don't worry if he's a couch potato. For us it was a battle to get our d to stop running. Keep him away from the computer unless you're at the screen with him, to protect him from pro-an sites. Play station, movies, books, anything that can help him conserve calories and put on weight is a good thing. As he reaches and sustains a healthy weight you will see him revert to more normal feelings about school and social activities.
Right now, the only thing that matters is his recovery.
Sending courage and hope. |
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 11, 2007 at 08:41 AM | Reply with quote | #28 |
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His desire for sweets is completely natural and healthy: his body and brain know he needs restoration immediately. He also needs lots of other stuff. And he needs his trusted caregivers to make those choices for him for a while.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 11, 2007 at 11:21 AM | Reply with quote | #29 |
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Arrrrggg! I usually weigh my son each Sunday morning. We're at a new low this morning: 76.5 lbs (down 5 lbs from the last weigh-in). |
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 11, 2007 at 12:31 PM | Reply with quote | #30 |
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bluebooks,
Use this information, the new low weight, as a turning point in your thinking about your s's disease. Everything, and I do mean EVERYTHING else has to stop until he is weight restored. School, scouts, you name it. Get him up to 3500 calories/day, use the "magic plate" and monitor his weight. If that isn't enough for him to gain, increase the calories.
Half measures will only make this worsen. You and your h have to be relentless about this. Work out your game plan, you have to be there 24/7 until you run his ed into the ground. Give him the relief he needs, food IS his medicine.
When you're seeing resistance remember that his future depends on the next bite.
Sending strength and hope |
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choke
Registered: July 31, 2007
Posts: 61
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| | Nov 11, 2007 at 12:37 PM | Reply with quote | #31 |
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No breakfast, no scouts. Certainly do not put pressure on the other boys at scouts to ensure he is eating and report back if he doesn't - that's not fair on them. Kids have loyalty to each other - in this case, it may be misplaced and informing you may well be seen as 'telling tales.' It's your resonsibility to ensure he eats.
Sure, he can have ice cream for lunch. That is, in addition to his main lunch. Ice cream alone is not nearly enough, calorie or nutrition wise to give his body what it needs to repair itself.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 11, 2007 at 04:31 PM | Reply with quote | #32 |
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I told my son how much weight he had lost this morning. He was all geared up for a battle -- but once he knew how much weight he had lost, there was no battle and he ate fine. I told him his weight because I knew he would eat. It that bad? Should I not tell him his weight? Even if I know he will eat? I'm sure that the battles would be worse if he were gaining and I told him.
Thanks so much for all of your help. Yesterday was rough, but he definitely is starting to get the idea about the ground rules. For lunch today, I offered two choices. He wanted to argue -- but I reminded him there were no other choices or negotiations -- and he responded. It's been hard to know how much to limit his choices. All your advice has helped me so much!
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Linda
Mentor
Registered: Oct 03, 2007
Posts: 328
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| | Nov 11, 2007 at 05:07 PM | Reply with quote | #33 |
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Hi Bluebooks
Just a thought about quantity and I don't know if others have had the same experience. Both my s and d lost weight when they started refeeding- even though they were eating considerably more than they previously had. It was as if the internal organs were grabbing all the nutrition first. My s was 20 yrs old but he required HUGE amounts of food just to remain stable- even more proportionately than my d.
So if you know he has eaten considerably more than the previous week don't be disheartened if he looses weight. Uses this as a guideline that it is still not enough. At times my son was eating nearly 6,000 calories a day just to maintain whereas my daughter gained with a steady 3,000.
He still eats alot though he is just within his weight range(I'd like to see him gain a little more). I think it seems a lot because he still uses a 3 meal 3 snack plan guide for himself, so it is a lot in each sitting. However his male friends just seem to eat continuously.
We found that nutritionists continually underestimated how many calories my d needed but they were nowhere near the ball park with my s. Even to me I couldn't believe how much food he had to eat and it was hard to keep my expression neutral and matter of fact. I do remember though that he was very reassured that he could eat a certain amount of food without gaining weight. This seemed to get us though the first hurdle of just needing to eat before we tackled the need for weight gain.
Good luck
Linda
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Mari
Mentor
Registered: July 31, 2007
Posts: 289
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| | Nov 11, 2007 at 07:17 PM | Reply with quote | #34 |
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bb,
If he likes ice cream, take advantage and give him the high calorie kind--Haagen Daz or something similar. It has twice the calories of regular ice cream. I actually made my own ice cream for months. I used all heavy cream. At 500-600 calories a cup, you can pack it in with 2 cups a day.
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 11, 2007 at 07:22 PM | Reply with quote | #35 |
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bluebooks,
The kindest thing you can do for your s is "magic plate" and that means no choice.
In the period leading up to a meal or snack, his ed is going to town on him. The disease is gearing up for battle against his need for food saying-- he doesn't deserve food, or food that tastes good, and it will make him fat..... His mind is spinning, trying to figure out how to slow down or stop the weight gain.
When choice is put in front of him at this stage it only raises the stakes and his anxiety. He experiences the choice in terms of counting calories, trying to figure out if he can hide the food, which would be the least tasty and therefore less likely to be enjoyed, etc.
The sooner he realizes that he isn't faced with these decisions, the safer he will feel. He will know that you are taking on the ed for him, and he doesn't have to find the will to stand up to his disease, which by the way...is impossible for him at this stage.
Use YOUR judgment about how to prepare a fully nutritious menu, including "treats", and give him a rest from this source of anxiety. The ed will quarrel with you about it for a while, but isn't the idea to tell ed to take a hike?
As your s gains and gets closer to healthy weight you can invite him (on a limited basis) to participate within a narrow range of choices, gradually increasing as you see him able to do this without meltdowns at mealtimes. But now he needs you to stand up to the disease for him.
As to telling him his weight, only do this if he keeps eating. I should tell you though, that most children who know their weight hit a wall, where ed goes bonkers. Either way, you have to keep up the drill...full nutrition, full time. Remember every bite is hope for his future.
Hang in there, we're rooting for you and your s.
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Kiddo
Registered: July 31, 2007
Posts: 68
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| | Nov 11, 2007 at 07:48 PM | Reply with quote | #36 |
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Hi Bluebooks
My s is encouraged to know his weight. I know for some parents they find that this causes more anxiety and added stresses so I think it really is up to the individual family.
We are following the re-feeding as best we can using the methods on this forum (plus a lot of support from here)
My s has been hospitalised in the past and as part of his medical followup's he has been told how much he should "gain" per week, what his goal weight is. He is seen monthly by his specialist and we actually graph his weekly weights. He knows when he looses weight - and sometimes this is helpful as he is now telling me things like ... "I knew I had lost weight because... and he will tell me things that I hadnt been diligent about (over exercise at school etc) and that gives me a chance to "step up" and try and close the gaps.
He is on a pretty strict plan as far as the specialist goes with regards to the weight gain - he has a minimum weight that if he falls under he will be re-admitted and this weight is made higher every few months. He also knows that failing to gain for extended periods will lead to re-admission.
This seems to be working for us, and most importantly my s knows that we are united (specialist and family) with the decision that its "full nutrition" and nothing less.
Again I think this is a personal choice, I think some children do ok with the transparency however others do not. I dont think there is a right or wrong - Just what works for each family.
Huggs
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 12, 2007 at 01:04 PM | Reply with quote | #39 |
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Thanks Lydia! Do I need to be worried about this?
Also, are there tests that his pediatrician should be doing? I read that article and it sounds like there is a lot that can go wrong. His pediatrician just listened to my son's heart and prescribed prevacid for a hyperacidic stomach.
We've only seen the pediatrician twice since my son developed the eating disorder. The first time, my son still weighed 98 lbs -- and I just wanted the doctor to confirm that the weight was appropriate (which he did). Then we went back because of his sick stomach -- but that's really all he addressed. The pediatrician asked me how my son's appetite was. For some reason I thought that was a crazy question. The Dr. knew that my son had been diagnosed as anorexic. I'm sure he just doesn't know what his roll should be. Should my son's therapist be recommending tests to the pediatrician? I guess this is where having a team helps -- I just don't know how to create/promote that interaction.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 14, 2007 at 12:20 PM | Reply with quote | #40 |
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We started refeeding on Sunday. Our son's calorie intake is still only 1900 to 2500 calories daily (going low and slow) -- but we already can tell a difference. The anorexic thoughts and behaviors are still there and we still have "blips" throughout the day. But they are only blips instead of hours-long battles. I think it is both the combination of increased calorie intake and restricted decision making. I didn't realize how hard it was for him to even make the smallest decisions. Hopefully that will improve as his Body Mass Index increases. His color and mood are also significantly better.
I am feeling hope for the first time in months. I just want to thank you all so much!
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 14, 2007 at 01:06 PM | Reply with quote | #41 |
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bluebooks,
GREAT WORK! Most parents who begin serious refeeding are amazed at how quickly we begin to see change. It makes me crazy to think of the years our d lost while "experts" were trying to help her think her way out of starvation (insert cursing here).
As you can see on the link I sent, most of the time (have to qualify this, there are no "always or nevers" in medicine), there are 2 things you can do to minimize the risk of refeeding syndrome:
Identifying patients who are at risk early is the key.
His doctor should listen to your s's heart to determine if you he has any indications of cardiac complications from his ed.
Bloodwork should show if there are abnormalities in his serum phosporus, potasium, or magnesium levels. If baselines show this is present when refeeding begins, then repeat bloodwork every few days will point the way.
Start low (you're alreading doing this) and build his intake. Limit caloric increases to about 500/day, until you reach 3500/day. If you don't see weight coming on after a week, increase again. There are patients who need as much as double this amount or more to recover weight. For us this was the big shock...if we dropped the amount by even a few hundred calories...our d's weight would begin to drop again.
One other thing, never go backward. Every day your s should get at least the same if not more calories than the day before, until you reach a level where he is gaining.
Any day when this drops, ed is winning. So no negotiations or debates about food.
The best way to keep him safe is to keep this march steady and certain, day after day.
I'm so glad you're starting to feel hopeful. This is hard work, and there will be some days that are harder than others...but you're on the right path.
More hope and strength coming at you! |
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marie2
Registered: Aug 01, 2007
Posts: 222
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| | Nov 14, 2007 at 02:11 PM | Reply with quote | #42 |
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bluebooks,
I just read the last entry on your blog. I don't want to be the voice of doom, but I do feel that I should warn you. From the sounds of it, your s is willing to eat 1800 calories a day. But to refeed him, you will need to get much higher than that, perhaps double that. The anxiety of eating that much will take it's toll, and things will get unpleasant for the short term.
The other day, when he ate 1900 calories, he believed that he ate 3000 calories. It is common for our children to overestimate their calorie intake. But I would warn you against helping him total up the correct amount. While it may have been calming the other day, when he is actually eating 3000 calories (which will be soon hopefully) it will not be calming.
Also, I see that you started limiting his choices to just 2 items. That is great and will definetly help with his anxiety. I know my d couldn't make even the simplest decisions during this time. I actually found that givin her no choice during the beginning was easiest on her. When we had gotten our routine down, I started letting her have more options. But even then, not much, because she would always, always chose the lower calorie option.
You're off to a good start. Keep up the good work!
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Harriet
Mentor
Registered: July 31, 2007
Posts: 209
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| | Nov 14, 2007 at 02:59 PM | Reply with quote | #43 |
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bluebooks,
Is your s under a doctor's care?
I highly recommend that you not be weighing him at home but that instead he be weighed, blind, peeing first and having his urine spun, at the doctor's office. And I would not recommend weighing more than once a week. Too many little fluctuations, and also weighing can cause tremendous anxiety. The doctor really should be taking charge of this part of things, and also watching for refeeding syndrome.
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 14, 2007 at 07:56 PM | Reply with quote | #44 |
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My son has a pediatrician, but we have only seen him once since the anorexia diagnosis. I kept waiting for either the doctor or the therapist to recommend additional checkups or weigh-ins or something. I'm pretty sure that the pediatrician doesn't have a lot of knowledge about treating someone with anorexia. How often should my son be seeing a doctor? What sorts of tests and checks should be done regularly? How can I foster his doctor to be more involved without telling him what to do (or should I be telling him what to do?). |
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Maria
Mentor
Registered: July 31, 2007
Posts: 2,613
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| | Nov 14, 2007 at 08:11 PM | Reply with quote | #45 |
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Yes, you should be telling them what to do. I printed 20 pages worth of stuff regarding Maudsley (http://www.maudsleyparents.org) and brought it to our Peds. I then told her that I would be bringing d weekly to be weighed in blindly. They already weighed their ED patients blindly. I also told them that I needed a written DX from them so that I could take it to school to start a 504. The Peds just nodded their heads and got on board. You have to be informed and have printed research that you can give to them. It doesn't hurt to throw names like Dr. Le Grange at U of Chicago, blah blah blah.
Our ped was totally open minded to learn as much as she could. There may be some who are threatened but you still have to inform them because most simply don't know what to do.
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 14, 2007 at 08:33 PM | Reply with quote | #47 |
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bluebooks,
a couple of questions. You started the thread saying your s was diagnosed 1 month ago. When was he last seen by a doctor?
You also mentioned a therapist. How often has he been seen by a therapist?
Based on your recent posts I'm hoping:
1. You have taken over complete control of his eating...and eliminated all choice.
2. You are keeping him out of school and other activities until his weight reaches a safe level.
He needs to be seen by a doctor now. He needs lab studies, including urinalysis and bloodwork, and to have a general check up including listening to his heart.
He has been on a serious downward slide, and this disease has been destroying his body. It's important to know his current medical status.
Most pediatricians are used to parents who are assertive when their children are ill.
It's possible the doctor has no idea how much your s has been struggling, or what he weighs now.
If you haven't already, you need to read "Help your Teenager Beat an Eating Disorder" by Drs. Lock and LeGrange. It would be a very good idea to take extra copies to the doctor and therapist, to get a real team effort going right away. Everyone has to have a clear understanding of the seriousness of his illness and how to implement the protocols of family based treatment.
Your s should be getting regular medical monitoring, weekly weighing in a hospital gown at the doctors office, with periodic lab work to be sure his electrolyte balance is in a safe place.
Hope this helps |
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bluebooks
Registered: Nov 08, 2007
Posts: 135
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| | Nov 15, 2007 at 01:39 AM | Reply with quote | #48 |
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Lydia,
I have completely taken over his eating. He is, however, still going to school and participating in scouts. Is this bad?
He sees a therapist once a week. Tomorrow will be our 6th visit (we went two weeks between once because the Dr. was not available).
The therapist diagnosed the anorexia -- not the pediatrician.
I've only taken him to the pediatrician once since July (because of an acidic stomach). How often should he be seeing the pediatrician?
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | Nov 15, 2007 at 07:57 AM | Reply with quote | #49 |
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I would be concerned about a therapist who isn't insisting on - and in regular communication with - a physician caring for the child. Preferably a physician with a lot of ED experience. |
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choke
Registered: July 31, 2007
Posts: 61
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| | Nov 15, 2007 at 11:05 AM | Reply with quote | #50 |
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Quote: Originally Posted by bluebooks
Lydia,
I have completely taken over his eating. He is, however, still going to school and participating in scouts. Is this bad?
1.Food (and enough of it - 2500+ plus) is the main priority and these activities come much further down the list.
2. He is medically stable (hence the need for regular check ups)
3. He is not participating in excessive physical activity
4. These activites are free from pressure and expectations (from all sides, including your son's.)
5. There is a plan in place with regards to supervised lunch/snack times
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