IrishUp
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Registered: Sept 05, 2007
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| | Sept 05, 2007 at 07:22 PM | Reply with quote | #1 |
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Hi - I'm new, and I am hoping that the more knowledgeable members and posters will have some advice for a very sticky problem.
Our 15yo d (my step-d, actually) has developed AN over this summer. Last summer, she exhibited compulsive binge eating (no purging), and gained perhaps 40-50 pounds between July and Christmas. She was a freshman in HS, had a huge falling out with her best friend, and it was an extremely difficult year. I was very apprehensive about her relationship with food then, but as the least influential of the decision-making adults when it comes to D, my recommendations that she get referred to a nutritionist and a therapist did not get acted upon.
As background, I've been with my husband for 10yrs, and H and her mom split up when she was 3. Currently, she splits her time between our home and her mom's, with my H having full joint custody. We also have a 5yo son; her mom never remarried and she has no other siblings.
Fast forward to this year, and what started as a reasonable diet/exercise program in April, became a "crash diet" in June. She alternates 2-weeks at a time between households in the summer. We had her the last 2 weeks of July, and I noted she was eating <700kcal most days. At this point, she was still somewhat over "ideal weight" and it was difficult for me to convince anyone that her restrictive eating and rate of weight loss were a problem. She also developed the myriad of compulsive behaviors with which I'm sure you're all too familiar - incessant exercise, compulsive reading of recipes & fat content, insisting on cooking, but not eating any of it, unvarying diet with only certain foods for each meal. I was finally able to point these behaviors out to my H, and he became just as worried as I. However, she was off to her mom's. When she came back, she was down another 10-11 pounds (this was in 15days).
We took her to her pediatrician, who thankfully, shared our concern, but did nothing more than to instruct her not to loose any more weight (she was then just about in the middle of ideal weight range for her height and build), discuss good nutrition principles, and schedule a follow-up.
At this point, my research brought me to the MM, and we began doing it at home, but still with limited success. Our goal was to bring her up to maintenance calorie intake (I have some friends who are RDs, who were kind enough to draw up some guidelines based on her age/activity/ ht/wt), but we were only able to do about 75%. We encountered crying, negotiating, and then apparent eating followed by purging, which was new.
Our real difficulty is that we cannot seem to get her mom to acknowledge that there is a problem. D spent the last week of the summer with her mom, and at her follow-up appt. Tues, she was >5lbs down from her previous weigh in 2 weeks ago.
While I am not blaming her mom for where she is now, D's mom has real issues that will make it very hard for her to be helpful. In fact, given her reaction at the doctors' office, and after, I'm now worried she may wind up making things actively more difficult. At the very least, her current denial that there is a SERIOUS problem will make maintaining a united front impossible.
Does anyone have any experience with family members who are in denial? Or advice on how to maintain feeding goals when your child is out of your reach?
Thanks so much! |
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LauraCollinsUS
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| | Sept 05, 2007 at 08:03 PM | Reply with quote | #2 |
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Welcome, Irish!
I don't have experience with getting separate households on the same page with these issues but I imagine it magnifies the problems many of us have with getting even two adults working in concert.
One thing, as you've wisely observed, is that different adults have differing levels of alarm and anxiety. If everyone had the same level of alarm - in this case appropriately HIGH - it is easier to make good plans.
This is a life or death issue, no exaggeration. So finding a family therapist who will raise the ex's anxiety to appropriate levels and and use the strengths of all three of you will be a great gift. The right therapist could make you and husband and ex into a team in front of your daughter, and offer her the safety of a united front against the illness.
You're doing a great job learning about and staying on top of this strange disease. I know the parents here will have helpful suggestions and I know we all are wishing you good luck in this new phase.
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md
Registered: Aug 09, 2007
Posts: 318
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| | Sept 05, 2007 at 08:09 PM | Reply with quote | #3 |
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I admire you for being such a kind and loving mother. Your daughter is lucky to have you in her court. Dealing with an eating disorder when a child is moving back and forth between families must be very challenging. Unfortunately, I don't have any tips for you, but I can say it is admirable that you and your husband recognize that there is a problem and are confronting it.
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Shawn
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| | Sept 05, 2007 at 08:45 PM | Reply with quote | #4 |
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My husband and I are separated, my daughter was diagnosed with anorexia last year at age 14. Our family participated in a Maudsley study and one of the questions they seemed to be honing in on was how single parent/separated/divorced families could manage that approach. We were told it was absolutely crucial to put aside our differences and work together. For the most part our panic and concern for our daughter made it surprisingly easy to put aside whatever bitterness and issues we had to focus on getting her better. My husband came over frequently to help out with meals. He understood just how ill our daughter was, however.
How to get your husband's ex to get to that point? I hate for your daughter's condition to have to disintegrate further before that happens...If the mom is unwilling to confront this illness, or go through the grueling refeeding herself, would she agree to allow your daughter to stay with you more often until she is on a better track? Is there a mutual family member/friend who could act as a go-between? Would your husband's ex wife agree to meet with you and your husband and a therapist? I'm wondering if you could find a therapist or counselor you trust, and then ask for a big family meeting to discuss the gravity of this situation. Would the doctor you mention be willing to participate in such a meeting? How about a powerful letter, supplemented by some of the family stories on this forum and some relevent articles or books?
You've probably thought of all these strategies yourself. You're in a tough place. I'm a stepmom myself(not to the daughter who became ill last year, but to her brother) and I know how frustrating it can be to care so much and be so involved with a child, but not really have your concerns and opinions validated or listened to. Well, you got your husband on board, and I bet you'll figure out how to get his ex on board, too. Good luck. You sound like a loving and wise mother.
Shawn
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IrishUp
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Registered: Sept 05, 2007
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| | Sept 06, 2007 at 02:34 PM | Reply with quote | #5 |
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Thank you all for the supportive comments.
Shawn - I found your suggestions particularly helpful, as I hadn't thought of some of those things - everything being relatively new. And it's nice to know someone else appreciates how difficult it can be to be responsible for a lot of the parenting, but still get excluded from a lot of the actual decision making. I joke that sometimes I get treated like all I'm missing is a poison apple and a huntsmen.
I am now thinking we should be frank with the pediatrician about our fears regarding mom's level of concern.My H has been reluctant thus far to disclose to the pediatrician his concerns regarding the ex. As the divorced dad, he frequently encounters the prejudice that he must have done something, thus he is sensitive to appearing as if he is vindictive. Yet in the present instance, the pediatrician may be able to convey the seriousness of what D is facing in a way that neither H nor I can.
You were also correct in perceiving that I'm very concerned that she will not be able to enforce getting D to eat. One of the reasons we were able to get full joint custody is that mom has turned D into the caretaker in the relationship, and the court appointed guardian ad litem felt that sole physical custody at mom's would be ill-advised. In the past we've had major issues over enforcing studying and homework when D's grades have fallen (to the point where she was close to failing a course) and finishing a full course of antibiotics (causing a relapse of strep that needed a full month of treatment), and other things like a shoplifting incident that went completely unpunished.
I'm hoping that faced with more dire potential consequences, D's mom will be able work with us. At any rate, I keep telling myself that I should wait to worry about future problems until some time when I'm running low on current emergencies (lol).
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Mari
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Registered: July 31, 2007
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| | Sept 06, 2007 at 03:27 PM | Reply with quote | #6 |
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IrishUp,
There has been some study on the connection of strep and AN. You may want to look it up on this website. Perhaps it will help with the doctor interface or maybe help the mom appreciate that your d does have an ed.
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Shawn
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Registered: Aug 04, 2007
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| | Sept 06, 2007 at 04:11 PM | Reply with quote | #7 |
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Irishup,
Your instincts have been smack-on through the deterioration of your daughter's health this year. Trust yourself.
You are right to be concerned. I was just horrified to discover, while going through old papers, that in fact my concern about my daughter's eating extended back TO A FULL YEAR before she was diagnosed officially with anorexia. (I had some e-mails from a friend I had written about my worries.) If only I had acted more agressively on my sense something was wrong---maybe we could have avoided some of the last hellish year. Though I must have taken my daughter to four different counselors asking for help before we got the diagnosis. The point I am trying to make to you is to PLEASE LISTEN TO YOUR GUT AND TAKE AS DRASTIC ACTION AS YOU CAN NOW.
The trick for you will be to keep focused on what will help your daughter most, without getting yanked into bickering with your husband's ex. Trying to enlist her help without panicking or alienating her OR somehow setting up this terrible dynamic where she and your daughter are in denial and in cahoots with the anorexia will be tricky.
Your idea to enlist your daughter's pediatrician seems to me to be exactly the next step to follow. Please tell your husband I understand all too well his concern that somehow the doctor could make some judgment about him and the divorce---I was very aware of the fact that many folks including a good (former) friend and my parents blamed me and my separation from my husband for my daughter's illness. But this is not the time to worry about blame or guilt or what other people think.
I am very impressed that you and your husband are wise and quick enough to realize how serious this illness can be and I encourage you to do what you can as quickly as you can to help your daughter. If you can get her biological mom on board, great. If not---well, worry abuot that when and if you get there. Even then, there will be steps determined and loving parents can take.
Good luck and keep us posted,
Shawn |
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Shawn
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| | Sept 06, 2007 at 04:18 PM | Reply with quote | #8 |
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One more thing.
I don't know if this is at all pertinent to your situation and your daughter's illness, but as I thought about your post and reviewed the events of our last two years, I realized that it was BECAUSE of my guilt and sadness over my separation from my husband that maybe I missed signs of my daughter's eating disorder. ANd that maybe professionals also misdiagnosed what was going on.
I think perhaps we felt that her behavior and unhappiness was because of the separation and would improve once she got used to the new arrangement, and so we missed all the classic signs of anorexia.
Again, not sure this is relevent but thought I'd mention it, especially if you are going to talk to your pediatrician. Don't let your pediatrician dismiss your concerns, or blame them on the divorce.
Shawn |
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IrishUp
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Registered: Sept 05, 2007
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| | Sept 06, 2007 at 04:31 PM | Reply with quote | #9 |
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Quote: Originally Posted by Mari
IrishUp,
There has been some study on the connection of strep and AN. You may want to look it up on this website. Perhaps it will help with the doctor interface or maybe help the mom appreciate that your d does have an ed.
Thanks for this! D has had strep at least once a winter for the past several years. She also has a recurring infection in her sublingual glands that keeps getting treated episodically, but I suspect is some sort of chronic infection or abscess. I'll certainly put it on the list of things to cover at the next MD visit.
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IrishUp
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| | Sept 06, 2007 at 04:53 PM | Reply with quote | #10 |
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Thanks Shawn -
We have had to confront a little bit of "blaming the divorce" just recently from H's family. While D's home life may be more complicated than many - given the two households & etc - I seriously doubt that her Mom & Dad's staying together would have led to a better home situation.
On the other hand, being myself the product of a blended family, I am only all too aware of how cracks in the family dynamic caused by seperate households can be exploited by teenagers who are up to no good ;-). I guess I can imagine pretty well how D's disease may make use of it too.
Perhaps the trickiest part for me right now is that D's mom is very threatened by me even still. I don't take it personally - she was raised by people who were (are) hyper-critical and stingy with their love, and she tends to view herself as unlovable. Thus, any affection D has for Me, in her world, is taken away from Her. The practical effect of this is that it causes D to have ambivalence about our relationship, which in turn makes our interactions in stressful times more difficult, as such times tend to highlight the differences in the parenting styles at each house.
But, in the words of the sage, "it is what it is". We're never going to wake up one morning with a different family from the one we have, and we're going to have to keep trying for everybody's sake.
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Shawn
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| | Sept 07, 2007 at 10:25 AM | Reply with quote | #11 |
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Irishup,
If its any comfort to you, my stepson is now 23. I believe that he is pretty fond of me, even if when he was younger he saw me as the evil stepmom.
Shawn |
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IrishUp
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| | Sept 24, 2007 at 07:00 PM | Reply with quote | #12 |
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It’s been a few weeks since I last posted, and I wish I could say the news was good. Listing the positives, the Peds is experienced in ED and claims to be supportive of FBTD. The nutritionist we have is great. DH & I are on the same page regarding D, and I figured out how to explain what-in-the-hell is going on to our 5yo son: Me (at bath-time) “I bet you’re wondering about what’s been happening when we have dinner with D” S “Uh-huh” (he’s nodding and playing with his pirate ship). Me “Well, D is sick, and her sickness makes her not want to eat. Sick people really need to eat to get better, so Daddy and I have to make sure D eats. Sometimes that’s really hard for D, but we have to anyway.” S “Oh. I hope she feels better. I’ll hug her.” Negatives are: D is down another 4 lbs from 9/5. The T she’s been referred to does not inspire confidence. And the worst, her M agrees D needs to eat more, but either won’t or can’t really go after the AN by full re-feeding. And D’s behavior and thinking are becoming more AN as each week goes by. An interim plan was arrived at last Thursday. The nutritionist came up with a 1600kcal/d plan and gave D an extensive list of foods from which she can choose – but she must eat everything at each meal (breakfast, lunch, snack, dinner). Weekly weigh-ins are at Peds, and no scales at home. Exercise is limited to 1hr total/d, and one day off per week. However, she’s being allowed to choose her “comfort foods” – which no carb or fat really qualifies as so this is a huge and distressing challenge for D. I wasn’t there for this, as we’re trying really hard to bring Mom around, and DH and I feel that she’d feel ganged-up on with me there, which would be counter productive. This past weekend was her weekend with us. She has a ton of new symptoms since our last weekend. At the beginning of the month she would still eat food prepared by someone else, but now she wont, and the general interpretation of the choose-her-own food seems to be that she get to prepare it. We went grocery-shopping -OICH that was trying. She almost cried when she couldn’t find any pork fillets that had fat content listed. Finally she found Perdue chicken cutlets that said 99% Fat Free. Also, dinner has to be an “all-together food”. Meaning the only way she can even tolerate eating what’s on her plan is as a single dish – the sight of separate starches and cooking fats are camouflaged this way. At the beginning of the month, she was proud of her new pants. This weekend she was back into her old jeans (probably 6 sizes to big now) because “jeans that fit make my legs feel fat”. She freaks out if there is a change of plans. I could go on and on. In my gut I know that this current approach is making the AN worse. True, she did not loose more weight at the last weigh-in (or maybe she did loose 1lb – the team seems to be giving her the benefit of the doubt on this one, there was a whole debate over what she was wearing at the last weigh-in) but Her Symptoms are Worse. The comfort she derives from her “comfort foods” is illusory. There is no way this is preparing her for eating on her own, and her M seems to think that as long as she stays at current weight, everything is fine. I think her nutritional status is going to continue to deteriorate, as she is leaving out the fats and carbs from the food she prepares at every opportunity. I’ve been sneaking them back in every chance I get, but my heart tells me her M isn’t using the same vigilance. All I keep wondering is once the current “truce” is ended, and she starts loosing again, are we going to be able to re-feed her? I can see my DH starting to be seduced by how easy it was to have a meal that was relatively normal – at least, once the appropriate serving was actually in her dish! Am I right to be this mistrustful of the current plan? Should she even be shopping for and cooking her own foods? Can she get better this way? How long before we start introducing other foods – and other preparers? Just call me a worry-wart. |
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Maria
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Registered: July 31, 2007
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| | Sept 24, 2007 at 07:13 PM | Reply with quote | #13 |
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You are NOT a worry wart. You have every right to be concerned. We wasted an entire precious year with our d by letting her eat her "safe" low-fat foods and continuing to exercise an entire hour per day. She didn't go below 83 lbs, which I was so deceived into thinking was a safe weight for her. She went as high as 86 lbs on and off but lost them until she stayed at 83 lbs. Her AN was outwardly "appeased" but as you have correctly figured out became more entrenched inwardly.
When we stopped the exercise and took COMPLETE control of refeeding her it was a nightmare for 6 weeks but she is now weight restored and there are many times when we see our little girl back. Appeasement only means that AN will come back stronger.
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LauraCollinsUS
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Registered: July 31, 2007
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| | Sept 24, 2007 at 07:22 PM | Reply with quote | #14 |
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Irish,
What you are describing is based on older thinking on eating disorders. It is not the approach recommended by any of the major ED or psychological or pediatric authorities.
In my opinion, although it is certainly still common, it is malpractice.
Have your husband watch this news video that came out today. It says it much better than I could: UCSF Changing Treatment For Anorexia (9/24) |
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Shawn
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| | Sept 24, 2007 at 07:26 PM | Reply with quote | #15 |
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A worry wart? My god, you are the only sane one in the bunch. How frustrating for you. Well, actually, it sounds like your husband is on board, but I know how tempting it is to think that everything is okay and to take the path of least resistance---especially if the "experts" are recommending it AND you have a former partner to deal with.
Wow. You are in a real bind. I think however you have got to follow your gut AND your heart here. And please don't apologize when you state your opinions and worries and DON'T call yourself a worrywart. I am outraged when I keep reading here on this forum of the "treatment" therapists give children with anorexia. It truly is a scandal.
As you can see, it is not only jeopardizing your daughter's health but making her more and more anxious and miserable. Has your husband read any of the posts on this forum, or checked into the Maudsley parents web-site? Perhaps a packet of info would be your best weapon at this point.
Anyways, I think maybe the other thing you could do, with your husband, is meet privately with the Peds, who you say is supportive of FBTD and make some informed demands.
1. A 1600 calorie diet is absolutely inadequate for turning around your daughter's weight gain. Most of us have found our kids need AT LEAST 3000 calories and more like 3500 to gain.
2. Choice is agony for our children. At least at the first stage of anorexia, your therapist is dooming your daughter to enslavement to the obsessive voice of the anorexia---which tells her whenever she can to restrict. You must be stronger than that voice---do NOT give it a podium!!!!
3. Along those lines, allowing our kids to prepare food is a disaster and cruel. Some parents have even LOCKED their kids out of the kitchen it is so stressful for them.
4. Fats, as you point out, are ABSOLUTELY essential to recovery. Some people believe in fact that it is the loss of fats as much as loss of pounds that leads to the insanity that is anorexia. Many of us give our children fish-oil supplements in addition to as much fat in their diet as possible.
Okay, I'll stop now. I KNOW more people will chime in. I'mso sorry, IrishUp. It's hard also to have this occur with a 5-year-old--my other daughter was 4 last year. It sounds like you handled the bath-tub scene beautifully. My heart goes out to all of you and I wish you and your husband continued strength and resolve. Is having your daughter stay with both of you for a month or so to get refeeding going, and maybe pulling her out of school for the first week or so, a possiblity?
You CAN help your daughter. There IS still hope.
Worrywart indeed. Canary in the mine is more like it.
Shawn |
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IrishUp
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Registered: Sept 05, 2007
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| | Sept 25, 2007 at 02:17 PM | Reply with quote | #16 |
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Thank you all so much for sharing your your insights & experiences. On the one hand, I would much rather have read that everything was fine and I was being alarmist, but at least this helps me press my case.
Everything I read emphasizes the need to be a united front. Unfortunately, our front is in disarray, the troops are scattering, the offensive has lost it's momentum, and the enemy - ED - appears to be gaining reinforcements. At this point, our two weakest links are M and the T. T keeps insisting that the initial sessions must be with D alone to "help empower her". DH and I discussed this morning that the T has got to go ASAP. Luckily, M doesn't like T either, but for a completely different set of reasons - her family believes that mental illnesses = personal weakness, so she really doesn't like the idea of a T or any psychiatric component. Which segues nicely into what we believe is the heart of M's resistance: she is really having trouble with the idea that D is sick for a whole set of reasons that have little to do with the current crisis.
From what I can gather from my DH, the Peds and RD are aware that M is on a completely different page from the rest of us. This is what has prompted our current compromise plan. The RD came up with 1600-1700kcal as an absolute minimum, b/c that was the most she could get M to agree with. The Peds signed off on this as long as D does not loose any more weight. To my mind, if both the Peds and RD realize that this is not optimal, they should be doing more to get M to understand the situation. I mean, if this were chemo, and M was having trouble giving it at home b/c she "hates to see D feel so sick", would the Peds really recommend a smaller dose of drugs for a few weeks?
Reading between the lines, and from something DH said, it seems to me that everyone is being lax b/c she's still within normal weight range. But I pointed out to DH that with her other symptoms getting worse, it doesn't matter what her weight is. She'll restrict every chance she'll get.
Shawn, I did use your idea and discussed with DH bringing D here for a month. We both know that M would never consent to such a plan under ordinary circumstances. We discussed his contacting the Peds and RD independently to rally their support. He thinks her symptoms will have to get worse (either >5lbs weight loss or behavioral issues that begin to impair school performance) before he'll be able to rally much support from the professionals on this point. A good T might be really helpful here in swinging the balance of opinions and we're trying to find one, but there is a real dearth of good Ts for adolescents out there.
If she keeps to her current eating pattern, she'll still loose about .5-1 lb every week or two. Considering how fast her mental state is deteriorating, I am wondering how long she can keep up with school. From what I've read from other parents, school performance can remain relatively unaffected for a long time. She doesn't have many close friends (in fact, she had a major falling out with her best friend at the beginning of last school year), so her social life won't be a good benchmark. I'm starting to keep a journal of her AN behaviors and expressed thoughts. I'm hoping having some written evidence may help the Peds see that weight maintenance is not the only worry here.
I am really depressed at the idea we have to let her get sicker before instituting effective therapy. That just seems crazy to me. I'm just not sure what other option we have right now.
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md
Registered: Aug 09, 2007
Posts: 318
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| | Sept 25, 2007 at 03:03 PM | Reply with quote | #17 |
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Hi. I can't offer much guidance, except to say that your daughter's school performance will not necessarily suffer because of her illness (and therefore is not a good benchmark for severity of illness). I had an ED while I was in high school in the 1970s, was hospitalized several times for a total of about seven months, and had a low weight of 65 pounds at 5 feet 2 inches. And I still managed to graduate as valedictorian of my class.
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ms
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| | Sept 25, 2007 at 03:14 PM | Reply with quote | #18 |
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Hang in there Irish up-the fact that you are doing something BEFORE you're (is it step d's) weight is dangerous puts you ahead of many of us when we started fighting this. Keep it up. It is so wrong to have to wait to get the proper help-keep searching. In a matter of weeks our d went down hill fast right before our eyes. I still can't believe it, but again she was already entrenched in ED by the time we started seriously getting the RIGHT help. I can agree w/md. our d was playing varsity level in two sports (a month before she was php) and had stright A's until the day before she went into the ed program. So, I don't think you can use school work an an indicator- at least we couldn't. She showed some of her best athletic performances while she was literally starving herself. (unknown to us of course)
Thinking of you,
ms
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md
Registered: Aug 09, 2007
Posts: 318
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| | Sept 25, 2007 at 03:27 PM | Reply with quote | #19 |
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One other thought: If you were not dealing with a shared-time child (can you tell that I'm a lawyer?), you and your husband could do whatever you wanted to vis-a-vis calories, no matter what the nutritionist or doctor or therapist said. I'm wondering if this needs to be any different despite the fact that your stepdaughter's mom doesn't agree. Can you still push more calories when your stepdaughter is with you and then at least know that she's getting proper nourishment when she's with you?
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IrishUp
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| | Sept 26, 2007 at 05:50 PM | Reply with quote | #20 |
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Hi md - thank you for your insight. Actually we're finding her grades are improving over last year! I'm guessing that we're seeing her complusions around eating starting to spill out in other areas (unlike many here, she has historically underacheived due to being a very disorganized student).
We are pushing as many calories on her as we can. It's become harder than it was due to the fact that D now uses the RDs plan as her absolute maximum - rather than minimum - and in her other home, there is not the same standard of vigilance. On longer stretches with us (like weekends), Sunday night dinner is miles away from Friday snack after school - which usually launches a battle that lasts through the hour after dinner she must be with one of us. Then she goes back to M, and our next meal together a few days later, and we're back to square one. Like getting stuck in mud, we're expending a lot of gas and spinning our wheels, but just don't seem to get any traction.
Anyway, it's what we have to do right now, until there are better options.
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Shawn
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| | Sept 26, 2007 at 06:48 PM | Reply with quote | #21 |
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Irishup,
For the time being,could you get the doctors to up her calories? Maybe by 400 this week? And then another 400, etc. etc?
You are right, our children seize on the bare minimum for their maximum.
If you do settle on a plan to increase calories I would allow her doctor to "prescribe" them and not warn her or talk to her about it beforehand. She'll just be terribly anxious and resistant.
Shawn |
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IrishUp
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| | Oct 01, 2007 at 06:45 PM | Reply with quote | #22 |
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So, the team met last Thurs for her weigh in and assessment. The good news is that she is maintaining weight - she's the same as last week, which is the first time since Aug that she hasn't lost. H brought up that she has not been eating 1600cal, and the log the RD is having her fill in indicates more like 1200. The RDs response was that since D has been at 75% for all of last week, we should target 85-100% (of 1600-1700cal) this week, and build up to 2000-2200 from there.
H also told the Peds that D's mental status seems worse. The Peds attributed it to increased anxiety over how much D's been eating (relative to where she had been, at 600-700cal/day), and said it was to be expected.
I still am trepidatious about where we're at. H rightly points out that we are making progress - M is supporting the current eating plan, D has stopped loosing weight at such an alarming rate, and there is a system of consequences in place if D fails to meet her eating and weight goals that everyone has agreed to. H believes that we can afford to take a gentle approach since we caught the AN early, and D's weight is only slightly outside of IBW. I counter this with the fact that she has exhibited disordered eating for about 18mo now (last year, she ate compulsively -w/o purging - and gained 40lbs in about 5mo), and that had she not started out overweight, her 50lb weight loss since April would surely have had more dire physical consequences.I worry that this may turn out to be like stitching a wound without really cleaning it out - it might look like it's healing on the surface, but inside infection is raging that will eventually abscess. For right now I'm doing "watchful waiting".
I've read that other parents have concentrated on bringing up caloric intake first, and then tackled the phobic foods (fats, carbs, sweets all seem to be common themes, and D is no different). My concerns are that D is picking the foods and preparing them, and still managing to eat less than the agreed-upon amount. So in strict terms, we're missing both on intake and on range or variety. Does anyone else have experience with taking this kind of tiered approach? How long a time is appropriate for building up to adequate intake? Will she be able to bridge to not feeling anxious about food if she's allowed to keep eating food that she's comfortable with?
I'd be most grateful to know other parents' thoughts or experiences on this.
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LauraCollinsUS
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| | Oct 01, 2007 at 06:53 PM | Reply with quote | #23 |
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Quote: Originally Posted by IrishUp
Will she be able to bridge to not feeling anxious about food if she's allowed to keep eating food that she's comfortable with?
Keep in mind that NOT eating makes her feel better - that is the way the illness works. Eating what she needs to thrive and grow won't feel good for a while.
The longer that goes on, the worse the eventual anxiety will be, and the less she will know how to handle it.
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Maria
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| | Oct 01, 2007 at 07:32 PM | Reply with quote | #24 |
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Quote: Originally Posted by IrishUp
Will she be able to bridge to not feeling anxious about food if she's allowed to keep eating food that she's comfortable with?
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lydia
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| | Oct 01, 2007 at 07:34 PM | Reply with quote | #25 |
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"My concerns are that D is picking the foods and preparing them, and still managing to eat less than the agreed-upon amount. So in strict terms, we're missing both on intake and on range or variety."
Irishup-
You're right to be concerned about these things. It's hard when M is resistant to full on treatment. It sounds like she may have been more troubled by the weight gain than the loss. Lots of parents encourage "healthy" eating when their children gain, and don't know how to reverse course when it's clear that their child is succumbing to an ed. Hopefully your H can back up the need for complete care, and perhaps the doctor can impress on M why this is so important now.
Sending courage and strength |
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ottr
Registered: Oct 08, 2007
Posts: 5
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| | Oct 08, 2007 at 03:58 PM | Reply with quote | #26 |
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Hi All. I'm the DH. Thanks all for chiming in at this point. It is comforting in one respect to here all of the support you all are providing. (it raises my anxiety too...) Thanks!
At last week's check-in, D was down another 2 lbs (after being stabilized for ~2wks). So we're back on track w/the weight loss.. My fear that M, being unable to appropriately "parent" and make the tough the tough decisions would lean with the current T's suggestions towards "empowering" D. M now is in agreement with T. My emails to T never get answered and T only has time for therapy w/D. How do we initiate the Maudsley approach when D is only with us 1/2 the time and receiving therapy counter to what we are trying to accomplish? It seems since beginning therapy, D burns more calories (one time fell asleep at the table) by resisting our re-feeding efforts. This stop and go approach doen't seem to work.
Though D failure to keep to the nutrition plan has consequences, (wt loss = not participating in any physical activity associated with after school practice) I sense D would rather choose not eating anyway.
I'm clearly the point person here, but I feel at times like I have no where to go , neither the hard push (right) and clearly not the gentle nudge (wrong) . One day at a time. Our next step is that SM and I are now recruiting for another T familiar with Maudsley to help interact with the team and ramp up the refeeding. I've already alerted M.
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Shawn
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| | Oct 08, 2007 at 09:25 PM | Reply with quote | #27 |
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Dear Ottr/DH,
Good to hear from you. You're right, you're in a tough position. But somebody's got to do it---it's the only way you'll be able to save your daughter. You are lucky in that you have caught this relatively early, still---and I think your plan of action makes a lot of sense. Many on this forum have decided to "fire" therapists when they are not helping and in fact are doing more harm than good. As for wondering if you have leverage with your daughter, some of us have taken our children not just out of physical activities but out of school (from a few days to weeks) to begin refeeding. So there will be leverage.
Please keep us posted, I was helped so much by the many wise folks on this forum. Do you know how many calories your daughter is eating each day now? Could her pediatrician be your ally right now? Some on this forum began refeeding without therapists, but with a very strong on-board pediatrician. Is there any way M would agree to allow D to stay with you more full-time, at least for the next few weeks until refeeding gets on track? As for your therapist, my personal opinion is you need to fire her.
Good luck,
Shawn |
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IrishUp
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| | Oct 15, 2007 at 06:25 PM | Reply with quote | #28 |
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First - and I feel that tho it gets said a lot, it can't be said enough - I'd like to thank everyone for their support, caring, and advice. This forum has been a true touch-stone in what has otherwise been a circus! Since I last posted, we had D for a prolonged stretch (Fri-Tues) over Columbus weekend. We were still under "orders" to let D pick her menu, etc. It was clear to us that the ANs response to being told to eat more (from 1200 to 1600), was to eat LESS. I'm sure no one here is surprised at that. We realized by Sun, that D was down to 800-900cal.
The practical result of the "feeding plan" the team had come up with was that it completely undermined dh & my attempts to feed her the way we know we should. Our authority on this was shot, and without other support - and with D knowing it - it was everything we could do to get her to 1200. We saw immediately that at Ms house, not even that amount was happening. On Monday eve. of the long weekend, D realized we were tallying up her calories and completely fell apart. She immediately developed a "stomach ache", her mom let her stay home from school Tues, and she probably ate <200 in a 36hr period.
This coupled with how much worse her food fears had become, and how much more of a grip the AN clearly had on her thoughts and behaviors, was the final straw for us. The things that got us through that weekend were that we had gotten very lucky that a very well regarded T had an opening that very week that dh was able to schedule and the absolute conviction that there was a better way! I don't think we'd have had either of these without this website (we got T's info from the treatment finder!).
The bad news was that D was down another 4lbs at last week's weigh in. However, this was also enough for our Ped. When she found out that this T was available, she told M that it was her professional opinion that starting FBT with this particular T was the next step for D (T practices a modified Maudsley, and though in private practice now, used to head a well regarded ED program, so the Ped knew who she was). M was really resistant at first, and wanted to give the current T more time, or interview more people. In the course of this discussion, the Ped started to explore what M's resistance was. It turns out that (as we had suspected) M feels that she can't make D eat, so much so that (as we did not suspect, but Peds obviously did) M was "dieting" with D, and had been doing so for some time!
I'm still trying to let this one go. Suffice to say that I know enough about M's family history that while it's a shock to find out, it's really not surprising. We've long known (from outside professional opinions as well as our own observations) that M has made D the caretaker in their relationship. M even openly says that she wants to be D's best friend, with apparently no insight into how this could be a problem for her and D. And M has always struggled with her weight, and has one sister who is almost assuredly AN/ED from what I can gather, so there may be both genetic ans social predispositions at work here.
Anyway, the Ped was great. She told M that D would need to be hospitalized in 2-4wks on her current pace, and that there was no time to play around with any more. She tried to reassure M that one of the goals of the T would be to help her get the skills that she needs to see that D eats. Finally, dh assured M that he would go to her house to help, and that at last resort, if need be, that we would take over feeding in our house, at least until the "acute" phase is done. Faced with the alternative of having D in the hospital, M consented. The first appt with the new T is this week.
It has been such an exhausting struggle just to get to this point, and yet I know that harder work is ahead! However, I feel better knowing that at last I can be a part of something that will actually HELP. It's always been my temperament to feel that frustration is more exhausting and draining than any action - no matter how arduous - ever could be!
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Shawn
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| | Oct 15, 2007 at 09:14 PM | Reply with quote | #29 |
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Irishup,
I was very heartened to read your last post. Now that you have the tricky stage behind you of getting everybody on board, you can move agressively into reversing your daughter's weight loss. It will be tough, as you know---but you can all do it.
I'm so glad you and your husband have been able to connect to a more informed therapist and that your pediatrician is helping. And I'm relieved you have gotten M on board. Congratulations for handling a truly tricky situation. Good luck with refeeding, and please keep coming to this forum for support! More importantly, keep following your gut. You truly are an extraordinary mom.
Shawn |
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Malia
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| | Oct 15, 2007 at 11:35 PM | Reply with quote | #30 |
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IrishUp--
I don't know how many pats on the back you get in your role as evil stepmonster, but please accept this one from me!
Your daughter is lucky to have you. (Come to think of it, so is your husband and his ex-wife!)
Pat, pat, pat.
Malia
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BridgetAUS
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| | Oct 16, 2007 at 09:25 PM | Reply with quote | #31 |
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Wow Irishup - your approach and commitment are fantastic.
Take care Bridget
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IrishUp
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| | Oct 17, 2007 at 11:35 AM | Reply with quote | #32 |
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Your supportive & kind words are making me feel teary (in a good way!) Malia, thanks so much - your post was particularly comforting b/c one of the particular mini-hells in this was that the first T told D that I was not her parent & she didn't have to listen to me. ARRGGHH! I mean, I know it's not true, and of course dh set both T and D straight on this immediately, but I bet y'all can imagine some of the things that the AN flung at me with THAT kind of ammo.
Really, what are some of these people thinking? I can't imagine how any trained T could think a remark like that would be helpful under any circumstances. My dad was an MSW, and worked with all kinds of very disturbed people (Viet Nam PTSD pts, heroine addicts, consulting for abused children), and I was training to be a clinical psychiatrist for adolescents before changing to my current career, so I feel quite qualified to say that this T needs some more experience, or training, or something. She's not very good now, anyway - or at least her skill set is badly matched for dealing with eating disorders!
Anyway, last night was our first dinner with D since my last post. Dh & I had previously decided that even though the eating plan hasn't been changed yet (that's happening on Thurs, I think), we will be handling what is served, and insisting on her eating appropriately in our home. I work late on Tues, and dh stays home, but it's always been the rule that everyone is home for family dinner on Tues nights. Dh said D spent the whole time he was cooking upstairs crying.
When we sat down to dinner, there was an initial scene - yelling, screaming, etc. She just kept screaming "I hate you" for about 5 minutes while dh served her plate up. A kind of funny aside - when she stopped saying that, our s (who's almost 5), said "You know, sometimes I find myself saying that, too. " Out of the mouth of babes! I don't know if it was that or the fact that dh and I were calm, but insistent, but she started eating dinner. It took about 45min, several crying fits and outbursts, and 2 reheats of her meal, but she finally finished her plate. We kept reassuring her that this would get easier, we were going to help her get over this, that we knew that this was hard for her, etc.
Now, we're pretty sure that she'll just eat less when she's not with us this week (we don't have her again till Friday), but we both feel better knowing that at least for one meal (actually two, there was breakfast this morning), she had what she needed. Also, it proves that we can do it, although I have no doubt that once the AN realizes that that's how it's going to be for good, we'll be in for more difficulties.
Well, to paraphrase Winston Churchill, it's not the end, or even the beginning of the end, but it is the end of the beginning.
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LauraCollinsUS
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| | Oct 17, 2007 at 11:43 AM | Reply with quote | #33 |
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"dh and I were calm, but insistent, but she started eating"
I wish all parents could hear this early in the diagnosis - it doesn't happen to everyone but if it was done early on I think more families would see this response. People just don't believe you could have all that "I hate you" and raging and crying but when it comes down to it - they want to be protected.
We fear that the insistence will make things worse, but it does the opposite.
Have you looked into getting full custody?
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Susan
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| | Oct 17, 2007 at 12:10 PM | Reply with quote | #34 |
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Irishup,
I continue to be amazed by your love, strength, and perseverance in such a difficult situation.
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ottr
Registered: Oct 08, 2007
Posts: 5
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| | Oct 17, 2007 at 03:07 PM | Reply with quote | #35 |
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"First - and I feel that tho it gets said a lot, it can't be said enough - I'd like to thank everyone for their support, caring, and advice" Ditto from dh (not sure what the "d" stands for here). I had to unplug the phone as AN was pleading with M to come and pick her up prior to last night's dinner . I then found AN on her cell to M. M's definitely not helping here and NOT fully on board. I had to tell M that D would call her after dinner. AN then wanted to call her first T. S will hit the fan when we begin the appropriate therapy. BTW, D was back after dinner. Now we prepare for the weekend.
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Shawn
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| | Oct 17, 2007 at 04:03 PM | Reply with quote | #36 |
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Do you hear the sound of cheering? It's me yelling Bravo all the way from Wisconsin!
Great job with dinner. In the spirit of Laura's question about custody, and I apologize because I know I keep asking you this question---is there anyway you could get M to agree to allow your daughter to live with you mostly fulltime for the next month or so? It's just hearbreaking to imagine the progress you are making(at the last meal, for example) getting thrown off track week after week. Most of us have found that eating must stay steady and expectations consistent. Clearly your daughter's ED is triangulating in a major way with the M and not only does it make your job much harder but it makes your daughter's recovery precarious and incredibly difficult for HER.
It's really heartening though to see how your daughter IS responding to your work and love.
Shawn |
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IrishUp
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Registered: Sept 05, 2007
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| | Oct 17, 2007 at 04:51 PM | Reply with quote | #37 |
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ottr -d in dh is for dear (usually ;-).
Laura and Shawn are right on one of our hot topics of discussion. It took almost 10yrs after dh and M's divorce to finally get full joint custody, and we've come to realize that, at least the way the family courts are in our state, we could not get full custody unless things were really horrible with D. Given that it would take about 2yrs to get a decision - and even if D were hospitalized, I don't think it would be a slam dunk that we would win - it's just not a practical solution. Although I'm sure we wouldn't hesitate if it turned out that there was no other way.
We believe, with the support of Peds and the new T, M will agree to have D stay with us, esp. with hospitalization looming on the near horizon, or, alternatively, I'll cover things on the home front while dh helps M at her house, or some combination of these things. It's still too early to tell exactly how this will all play out, but Dh & I have spent most of the 10wks of the failed experiment marshalling what resources we thought we would need to start re-feeding. Dh has already alerted the key people at D's school (they have a special counselor and the school nurse). I've let my bosses know, and they're supportive, and if needed I'll be able to take time off.
It seems to me that we need a very delicate balance between flexibility and steadfastness. I've long had an internal mantra for conflicts - "is this the hill you want to stand and die for?" The hill we're staking is D's health and recovery. We need to give ourselves the flexibility to make any adjustments necessary to take that hill. D needs to eat, we need to do whatever it takes to get her fed. The alternatives are unacceptable. The weirdest thing about this process has been watching how ineffective first line treatment is. All of the clinicians we've been involved with have seen ED many times before. But it's like they have this weird recipe for ED treatment:
Muck around with the diagnosis for at least one week (longer if necessary). Refer to Nutrionist who will draw up inadequate feeding plan. Refer to Therapist who will apply outdated, ineffective methods to the problem. Watch patient decline. Hospitalize. Repeat steps 2-5 as required. Home refeeding as last resort.
I keep reading in the literature that AN treatment takes years. I think it's only because the most ineffective things are done first, and they'll keep doing them ad nauseum! Imagine if your doctor said "I'm sorry, your d/s has cancer. First we're going to try this really old chemotherapy for a few months. It doesn't work, but it's what we've always done. Next, we're going to try other treatments that are ineffectual, while the tumor gets larger. Finally, we'll use another new chemotherapy that's really promising. It works best on stage 1 cancers, but we wait until the cancer's a stage 3 or 4 before we use it."
Thanks again to everyone! It's such a big, big help.
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LauraCollinsUS
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Registered: July 31, 2007
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| | Oct 17, 2007 at 05:16 PM | Reply with quote | #38 |
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IO,
Brilliant. Absolutely brilliant, funny, and way too true.
Now, how are we to get the rest of the world to see this?
(I have a feeling you'll be kicking the system's behind as soon as you get your d's illness under control. Welcome to the good fight, my dear!)
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sc
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Registered: Aug 17, 2007
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| | Oct 17, 2007 at 08:45 PM | Reply with quote | #39 |
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Dear Irishup:
You are amazing, truly, truly truly. And I loved your analogy about home re-feeding. Unfortunately matches our experience where when our daughter was first diagnosed and wanted our help the most we were told to back off while she got nine hours a week of talk therapy and support groups and stayed under her 85% while we watched her literally get more anxious and sicker before our eyes. Not being as forceful as I am now I would timidly bring up Maudsley and be told she was doing great work in therapy and would eat when she was ready. When that didn't work they wanted to try residential. It took us forever to pull her out of there and only after two and a half years and hospitalization for medical instability did we start Maudsley. How when you see this so clearly can the treatment programs continue the information they put out that doesn't even address this as an option. Where is informed consent in this process--patients (and their parents if they are minors) are supposed to be informed of the risks and benefits of treatment as well as alternatives. How about this:
"Your child is about to enter a residential program which has no proven outcomes, a relapse rate of X, and costs 1,ooo dollars a day. There is an alternative which has a success rate in randomized trials of about 75% and costs about $300 per week.
Sign here to admit your daughter '
I keep thinking about your challenge as a family with two households. Would it be possible for your D to be with you for all meals and still stay at her M house or alternatively for your H to do dinner and snack at her M house when she is there. Is it possible the M would at some point support her living with you for some period of time to get this started. If you explained that she could be the support system and you two would handle the re-feeding it could be a role she would like. I know some of us have used our own siblings in this way. My sister did not do the re-feeding but was a constant in my D's life as someone to talk to, to turn to, and to be with when she just was too mad at us.
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IrishUp
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| | Dec 17, 2007 at 09:23 PM | Reply with quote | #40 |
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Quote: But it's like they have this weird recipe for ED treatment: Muck around with the diagnosis for at least one week (longer if necessary). Refer to Nutritionist who will draw up inadequate feeding plan. Refer to Therapist who will apply outdated, ineffective methods to the problem. Watch patient decline. Hospitalize. Repeat steps 2-5 as required. Home re-feeding as last resort
So I wrote that two months ago? We made it to #5 in early Nov. After a magical mystery tour of 4 IP settings, one of which could have killed D (anybody in the MA area who's child is EVER referred to the Somerville Adolescent Assessment Unit, please feel free to email BEFORE those quacks get their hands on your precious s/d!!!!), d was discharged at 90% of "ideal body weight". New MD has us repeating steps 2 & 3 (bad eating plan is back along with the bad T). Step 4 is progressing nicely, and we will be lucky to avoid #5 (x2) before Christmas. Do I sound bitter? I hope so, because my black Irish humor is all that is keeping me from screaming in the streets.
I'm going to start a new game, called "ED Treatment Bingo". The center star that everyone gets will be the statement "It's about control." Then, as the events unfold, you get to cover up the other boxes until you have a straight line. In the past two weeks we've amassed:
"Your being too controlling" (new MD) "We don't share weight/vitals" (ditto) Having MD communicate directly with d before parents "Let your d pick her foods" "Don't worry so much about calories" Mixed messages from Nut, T1, T2, and MD about nutrition plan in the same week "D needs empowering" (bad T)
I'm sure there are other chestnuts that escape me right now. My idea is that when you "win", you get to send it out to the care team to show them exactly how predictable and ineffective this treatment plan is. H seems to think that I'm being heavy-handed, but I can dream, can't I (;-\).
We do have one serious problem, insofar as MM really won't work now b/c M has told several clinicians point blank that she will not "make d eat" or "do Maudsley" (though we are quite sure that M has not actually read anything about MM/FBT). I can't help wondering how d's care team would react to being told "I refuse to give my child insulin/chemo/inhaler (etc)". Or being told that I won't let my healthy child eat? I'm pretty sure that lots of effort would go into trying to change that parent's mind.
My other worry - the major one, really - is that every one seems to be treating the situation as stable. Hello! D is at substantially the same weight as when she was admitted to the cardiac ICU with a resting HR of <38! How can she be ok? Her physical and mental symptoms are so much worse. Nutritionally, we are back to what she was doing in Sept, only now she's had 1 hospitalization, she's 15lbs lighter, and her body has endured eight more weeks of abuse.
And my poor H keeps getting treated as if HE's the problem whenever he questions the new MD. Combine this with the fact that his ex likes the new MD, and he feels really stuck. We still have the good T on board, and H is doing all he can to keep it that way, hoping that she can slowly turn this boat around. We hope we can do this before another IP event. We've talked about how another hospitalization would give us great ammo for jettisoning those on the team who need to go. But it's such a horrible risk. I seem to see an hourglass in my head, with d's health slowly slipping away... but we can't let that overmaster us. We have to be in position to take over as soon as the opportunity presents.
I can't tell you how much it means to us to have this site to go to. Reading about what other's have overcome, the information, the links, the support and love help keep our courage and determination up.
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lydia
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| | Dec 17, 2007 at 10:44 PM | Reply with quote | #41 |
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Wow Irishup,
Your love and determination just dazzle me. Not only are you asking the right questions, but I'd have one more for M-- Exactly how sick does d need to be before you'll believe full nutrition, full time is the answer? I'm so glad the good T is still in the picture, and your H is hanging in.
Sending hugs...and hope. |
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anneUSA
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Registered: Aug 01, 2007
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| | Dec 17, 2007 at 11:59 PM | Reply with quote | #42 |
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I haven't been following all you've been through, but I am also in the MA area. There are some Maudsley therapists listed in the area (only a few, I realize). However, it sounds like getting your husband's daughter's Mom on board is the hard part. We also did not do Maudsley because we didn't know about it when my daughter was ill a few years back. I am noticing that Catherine Steiner-Adair is listed now as a Maudsley practicioner. She is a big name in Eating Disorders. She has an office in Lexington. Perhaps you could try contacting her? Also, my daughter's Adolescent ED specialist says they are now doing Maudsley "on a limited basis" out of Children's Hospital in Boston. I can give you her name and you could call her and find out more.
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IrishUp
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| | Dec 18, 2007 at 11:36 AM | Reply with quote | #43 |
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Thanks so much for the info anne. I hope that you won't mind if I do contact you for her name later, if we need it. D is being followed at Children's, and it was there that she was IP in the CCU; we thought her IP care was terrific. Unfortunately she wound up being transferred to another IP once her cardiac condition was stable (first available bed), and we ran into insurance issues once she reached that 90% cut off. While I think the overall program at Children's is probably very good, we are having issues with the MD following our outpatient progress. H & I have resolved to go over her head to the Attending who was in charge of d's INP admission if things are not markedly better within the next two weeks.
Right now, we feel that one of the issues is that the continuity of d's care keeps getting interrupted. While this is never good for any patient, we have particular problems b/c of the divorce. we keep encountering a prejudice against H - ie "they're divorced, HE must have been the problem." Usually H is able to overcome this bias, but it takes time. It's being exacerbated in this case b/c our good T was out of the country when the crisis hit, and bad T was brought back into the care team. She keeps insisting that control issues with me and Dad are what's driving d's ED - and BTW, she has not ever done even ONE session with any of the parents. The new MD seems woefully uninformed about current best practices and thinking regarding EDs, and seems to be taking bad T's assessment as fact. H is hopeful that our good T, who is very well respected (we got her from the Maudsely Parents' site) can get everyone back on the same page eventually.
We're reluctant to change anything right now when the gaping hole in d's care is how to get a full nutrition plan to be enforced uniformly. Right now, d is eating what I have come to think of as her "max comfort plan" - about 1000 cal/d -but it's supposed to be 1200 to 1500-, minimizing fats (and hardly any saturated or omegas), and keeping to safe carbs (never more than 130cal/serving). Besides being completely deficient in macro-nutrients, she's getting <500mg/d of calcium, incomplete B vitamins, and probably iron deficient as well.
The MD told us yesterday that this week the cals will go up to 1500-1800. The last time we did this (in Sept), ED responded by going from 1000-1200 to 800. Mostly by picking the least calorie-dense items on the exchange, and hiding, smearing and "de-briding" the food. I expect that this is exactly what will happen this time. D (or should I say ED) is complaining loudly about "fat days" already.
Isn't doing the same thing(s) over and over, but expecting different results, the definition of insanity?
Thank you so much lydia - the hugs and hope are both needed :-)
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lydia
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| | Dec 18, 2007 at 11:49 AM | Reply with quote | #44 |
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"Isn't doing the same thing(s) over and over, but expecting different results, the definition of insanity?"
Irishup,
Yes it is! Have you given the attending a copy of "Help Your Teenager Beat an Eating Disorder", or the "Treatment Manual"? We did this with our d's doctor, who had very little information. One of the things we learned is that this is such a difficult/baffling disease to treat, many clinicians are open to the most recent scientific breakthroughs.
The benefit of the literature is that it shows clearly that FBT is not only more effective, but it blows out all the nonsense about "controlling parents" as the etiology of eds.
Once the attending physician is on board, they can make a world of difference in how the whole team approaches things. Keep in mind that doctors are very results oriented. I'm hoping this helps. |
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IrishUp
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Registered: Sept 05, 2007
Posts: 307
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| | Dec 18, 2007 at 12:08 PM | Reply with quote | #45 |
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Lol - coincidentally, we were just talking about giving "holiday presents" to bad T (who I don't think is a bad person, just really mucking around in something she has no formal training for) and the new MD of the Treatment manual and a literature review I've done up. A lot of the research I've been involved with has been in evidence-based medicine; basically asking the question "How come it takes so long before clinicians actually change practice in response to the newest/best information?". Getting out the newest and best information to practitioners is only the first step, but it's useful in that at least you now have common points of references to argue about! ;-]
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | Dec 18, 2007 at 12:43 PM | Reply with quote | #46 |
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IU,
I cannot say anything I haven't said before, except this:
Your situation sucks.
I am so angry that an illness with such potential to destroy lives is compounded by such a chaotic and almost reflexively counterproductive "system" of care.
It is horribly, horribly wrong that your family isn't given the appropriate supports to heal and sustain your dear daughter and give her back her life.
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IrishUp
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Registered: Sept 05, 2007
Posts: 307
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| | Dec 18, 2007 at 05:36 PM | Reply with quote | #47 |
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Thanks Laura. Even having someone else say "this sucks" is helpful.
I share your anger, and I've been spending a lot of time thinking about how to change this. No one should have to go through what we've gone through, or any of the other families for that matter. We have a sticky problem, yes, but if our d's care team were of one mind, I think it would be a lot less sticky.
I'm sure I'm not explaining it well, but I feel as if there is a tipping point near, an opportunity to change both the treatment paradigms and the insurance issues that present such barriers to the health of our kids. The question I'm wrestling with is how do we effect this change? What can I do that will make a difference? I just cant shake the idea that we can do better than this.
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Mari
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Registered: July 31, 2007
Posts: 289
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| | Dec 18, 2007 at 07:31 PM | Reply with quote | #48 |
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Irish,
Can you do anything on a legal basis? What I mean is, can you sue for sole custody on the grounds that she needs the stability and full focus to regain her health? It sounds like her mother is not able to follow through on a course of action that will help her get well again. Whatever path you take to get her well, it has to be one path. I think you could make a good case for this.
You are an amazing woman for all you do for your step daughter.
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Lisa
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Registered: Aug 01, 2007
Posts: 610
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| | Dec 18, 2007 at 08:56 PM | Reply with quote | #49 |
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Irishup,
I am so angry with your d's situation. It's so unfair that she has to suffer, because the adults (M and treatment team) won't take real action -- full nutrition.
I think you're right about being near a tipping point. I was thinking that one way is to educate (aka lobby) insurance companies about the research showing that FBT and inpatient programs that keep patients until 100% weight (or whatever the percentage is) are more effective and, in the long run, more cost effective (both in treatment costs and because of lower relapse rates). They respond to numbers. Perhaps this has already been tried. I took part in this effort, locally, for midwifery coverage many years ago.
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | Dec 19, 2007 at 09:41 AM | Reply with quote | #50 |
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One of my dreams for this forum - one I'm about to ask all of you to weigh (sorry!) in on - is taking this momentum to create a force for change led by parents.
Although things are marginally better now than 5 years ago when I dropped down this rabbit hole, they are still not good. No family should have to compound the terrors of this illness with less than excellent treatment.
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