jodie
Registered: June 18, 2008
Posts: 10
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| | June 27, 2008 at 06:00 PM | Reply with quote | #1 |
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We are one week into refeeding, and despite upping her intake to 3,000 calories she's lost one pound. I'm at a loss. We monitor her like a hawk. After one purge attempt we don't leave her alone, period. She sleeps in our room and we did take the doors off every bathroom and her bedroom door. We just found a family based eating disorder therapist and we're going to be meeting once a week. I'm just so exhausted already, and we've lost ground not gained any. We took J. into the docs due to severe gastric pain and he said her stomach was delaying emptying and her digestive tract was blocked. Poor girl. She's on gentle laxatives. It helps with her disgestive tract but nothing has been helping with her stomach pain. She's been crying hysterically, especially at night due to pain. I'm not sure if all of the pain is physical, I suspect much of it is emotional too. She's actually been much more cooperative than I thought she would be. She hasn't been screaming horrible things at us, just begging more than anything. After she eats she can't sit still; she paces around the house crying because she "has to get it out of me!!!!" She's been begging us to let her throw up, saying she's going to get fat again and no one will love her and she'll be a failure. It is breaking my heart, and my husbands. He's been crying so much lately... we both have, but not in front of her. I know we're doing what needs to be done: feeding her and keeping her safe. I feel like she's in prison though because it's all she does: eat and then cry because she can't throw up and then sleep and then eat, etc. I'm wondering what you did to keep your kids distracted. Fun things you can do inbetween meals. We've been watching movies but I can tell she can't focus at all. She's fideting and sometimes even crying siltently. I feel like my heart is being ripped in two, especially because we're the ones making her experiencine this agony. Does anyone have ideas for doing fun, easy things in between meal times? I've been thinking of painting (she loves it), reading aloud, scrapbooking (we have years and years of photos), taking care of the horses. Does anyone have other things that worked for your kids? Things to keep them relaxed and calm? |
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helpme
Registered: May 26, 2008
Posts: 11
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| | June 27, 2008 at 06:22 PM | Reply with quote | #2 |
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| We've gone for walks and watched movies mostly. My d also goes on the internet or tries to read. I'm sorry you and your d are going through this, it is not fun. |
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 27, 2008 at 06:22 PM | Reply with quote | #3 |
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Jodie,
"especially because we're the ones making her experiencine this agony"...No, no, no. She's been living this hell in secret....everything she is saying out loud to you now has been rolling around inside her for years....since 18, I think you discovered. You and your husband are helping her come out of the dark....and 'Ed' is fighting you. You just have to "keep going". Don't allow her to pace between meals....more calories are burned that way than you think. Do find some quite activities, like the painting, that you can sit & do. Keep pushing the cals up. In the MN Starvation experiment/study, Keyes found that 4,000 cals daily were necessary for recovery. All of her 'systems' are in a terrible state of shock, so don't let yourself become discouraged because of the scale this week. Plug up any holes in the damn dam (no pacing, no purging, more calories) and "keep going!"
Have you talked w/her physician about anti anxiety medication during re-feeding? Our d took 10mg of Lexapro daily; we're currently weaning her off at 5mg daily. It's worth a phone call to the doc to explore the possibility....
I'm so impressed w/your tenacity. Hang on.
Zeri
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 27, 2008 at 06:24 PM | Reply with quote | #4 |
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We have a pool table & my other children kept d occupied a lot w/a game of pool...which helped her tremendously as she was very anxious after meals....and we watched movies.
Z
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Mari
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Registered: July 31, 2007
Posts: 289
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| | June 27, 2008 at 06:32 PM | Reply with quote | #5 |
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Jodie,
All of the things you mention can work to distract. Find something to absorb her attention. They are usually very good at concentrating on things so anything that requires concentration like painting, scrapbooking. If she loves horse, go and see them. Go to the mall and shop for shoes, fun jewelry. Do manicures and pedicures. Walk around the block. Take some kibble to an animal shelter. Plan a 'dream' vacation, pool, deck, beach house. Write letters to shut-ins, retirement home residents, our soldiers in Iraq.
It's good that she saw the doctor. We tried a hot water bottle and peppermint oil for tummy pain. I got some of the peppermint oil and used it in milkshakes, too.
All the things you describe are normal distress. It will get better. As far as weight gain, consider that her body is in repair mode. I know others had quicker success, but it took us about a month before we could get to a pound a week gains. Before that, there was some fluctuation. Try to increase calories. Are you doing a shake at night? If not, that could get you an extra 1000 calories.
This part is very difficult, but kudos to you and your husband for getting through the first week. You will prevail.
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Linda
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Registered: Oct 03, 2007
Posts: 328
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| | June 27, 2008 at 07:10 PM | Reply with quote | #6 |
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Hi Jodie
My s also found it hard to put the weight on and we were with him 24 /7. He is now weight restored but still needs to make sure he monitors himself as he still needs huge calories to keep the weight on.
The distractions used between my s and d were car trips, movies out, video, rented a pool table for a month, board games (didn't last long) sewing, knitting, pottered around shops, walks in countryside, afternoon tourist trips. I kept my d away from the internet but for s it was a good distraction. To stop the continual pacing after meals for my s we went for a stroll around the suburbs. At first he found my pace irritating. My d also took a renewed interest and responsibility for the family dog. She has her own horse - which of course she wasn't allowed to ride but still being involved in care helped in the later stages - especially as she worked out their necessary food intake!
Painting sounds a great one and of course you'll need to check out the art shops first. Of course most didn't work really well as distractions at first(their heads still didn't let up) but they helped to fill the time which was a huge help in itself. It also gave a focal point between us.
Both mine used "stool softeners" under medical supervision but even so my d 's bowel blocked twice needing intervention. I gather all those years of purging both ends had thrown her digestive system and it had stopped working properly. I'm happy to report that both their digestive systems are now functioning normally without any artificial aid. Amazing especially in my d's case but the body has an amazing capacity to recover unfortunately it just all takes time.
Oh my d used a wheat bag at night on her stomach. She wanted to use a hot water bottle but she had this way too hot and wanted to put it directly on her skin- not good.
Reassure her this will all definitely improve. I doubted this at the time but it's true.
Best wishes to you and your husband.
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | June 27, 2008 at 08:05 PM | Reply with quote | #7 |
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Calorie needs are so individual. And the metabolism can vary a LOT over time. Our daughter needed over 4000 at one point to keep going up a pound a week.
The fact is, the momentum of losing may have been in high gear and you would have LOST more if you hadn't been doing what you are doing.
This is a very, very hard time but it is temporary IF you don't back off. Distraction and other assistance are good, but keep in mind that sometimes we can't make it better or easier, it is just hard. But sticking with it, and sticking with her, is the greatest statement you could possibly make.
24/7 safety.
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dh
Registered: Jan 17, 2008
Posts: 139
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| | June 27, 2008 at 11:00 PM | Reply with quote | #8 |
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I am so impressed with how you have taken charge so quickly. It is heartbreaking to see our kids suffer through this, but the alternative is a potential lifetime of suffering. The distress will eventually decrease. You are in the hardest stage right now. I was at this stage with my d only 6 months ago and your description brings back a lot of terrible memories, but they are just memories now. We persevered through hell, watching her in unimaginable physical and emotional agony, and she is now almost weight restored and back to her old happy self.
It took us quite a few weeks to get up to enough calories to gain also. I found it shocking how many calories were needed to gain. Finding calorie dense foods helped so my d didn't have as much volume to eat.
Sorry I don't have any great suggestions for after meals. My d liked to be alone or use her punching bag for the anxiety and you can't leave your d alone with the purging. Laura is so right, sometimes you can't do anything to make it better.
You are doing a fantastic job. Don't lose heart!
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lydia
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Registered: Aug 04, 2007
Posts: 2,769
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| | June 27, 2008 at 11:29 PM | Reply with quote | #9 |
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" I feel like my heart is being ripped in two, especially because we're the ones making her experiencine this agony."
Jodie,
I hope you know that it's ed, not you or your h, creating this agony for your d. And it's why your determination and love are so important for her now. Just imagine what would lie ahead for her if you weren't stepping in and taking control away from this cruel disease.
"Feeding her and keeping her safe" is exactly what she needs from you. She needs to be protected from the impulse to purge and exercise right now, to conserve calories.
Our d agreed to take short (very short) slow walks with us instead of pacing around, I don't know if that might help your situation. "...painting (she loves it), reading aloud, scrap booking (we have years and years of photos), taking care of the horses." these are all good ideas. Maybe puzzles, learning how to play chess or other board games could help. Anything that helps her change focus.
But the reality is that despite all your efforts there will just be bad patches, where it's going to be hard to keep your d "relaxed and calm". Ed is determined to fight back, and will not let up it's grasp on her easily. Sometimes my d let me brush her hair or cuddle her. And there were some times when she would just need to zone out. I just made it a point to stay close by.
We all do understand how hard this is...sending hope and hugs. |
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 28, 2008 at 12:01 AM | Reply with quote | #10 |
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Our d is also on the re-feeding rout. She too is "bored" silly. She tries to keep busy with using her laptop, doing some school work, reading the newspaper, doing puzzles and short walks with myself or husband and our little dog. We also I take her to shops for very short trips, occasionally having her snack while we have a coffee (today we went shopping for d's 50th birthday presents). We don't walk every day, just every other day. You are doing good job. As they say "Chin Up"!
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lydia
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Registered: Aug 04, 2007
Posts: 2,769
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| | June 28, 2008 at 12:14 AM | Reply with quote | #11 |
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Jodie,
Lisa's post reminded me...I used to take our d out for milkshakes at fast food drive up windows or to Starbucks for their Frappuccino® Blended Crèmes. (http://www.starbucks.com/retail/nutrition_beverages.asp)
It was a way to get her out of the house, the short car trips helped break up the day. As things progressed we added french fries, burgers, and some of the pastries from Starbucks.
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Colleen
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Registered: May 15, 2008
Posts: 1,611
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| | June 28, 2008 at 01:25 AM | Reply with quote | #12 |
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My d would go to her room and cry for hours after meals. I felt awful because I knew the ed was just beating the crap out of her. I wanted to stop it. Make it end! But there really wasn't anything I could do. She just had to tough it out. This was the worst part of it for us as parents. She was so depressed and suicidal during this time, and it seemed like she just didn't have the energy to fight back against the ed. She sure didn't have the energy to do puzzles or paint or anything she might like...and certainly nothing that required socializing like a game or a walk. It just took time...way more time than I wanted it to take. We are in our 4th week of refeeding now, and she doesn't brood in her room so much any more. She's kind of obsessed with video games, which is unlike her, but I figure hey, if it passes the time. She just has to rest and get stronger. Whatever it takes.
The thing is, it takes TIME, so just get her through each day, and you'll be one day closer to her good health. If it's a miserable day, well, darn it, that sucks--but that's still one more day of moving away from an ed. Your job is to feed her and keep her safe...I don't know if we necessarily have to entertain them while we do it. Sometimes we just can't make it a comfortable time. It's hard.
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 28, 2008 at 02:07 AM | Reply with quote | #13 |
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Hi Jodie,
Our d chose puzzle magazines to distract her at meals and after it was the scrabble marathon. I guess it's whatever works for your d. The pain and discomfort they feel is very real. The metabolism shuts down. Hot water bottles worked well and eventually she was able to have therapeutic massages (body wraps) where she would fall asleep on the table.
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BridgetAUS
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Registered: July 31, 2007
Posts: 1,067
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| | June 28, 2008 at 03:15 AM | Reply with quote | #14 |
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Hey Jodie - you sound like you are doing a wonderful job. This illness turns a perfectly natural, essential and enjoyable human behaviour (eating) into an excruciating ordeal for these kids - it is the illness making your d so miserable, not you. It is heart breaking, but hold onto the fact that you are doing the very best thing for your d. It will get better.
take care
Bridget
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kmtmb
Registered: May 13, 2008
Posts: 53
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| | June 28, 2008 at 08:07 AM | Reply with quote | #15 |
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Puzzles work well for my daughter. She has been in a lot of hospitals and the girls would work on puzzles constantly. Since we've been doing refeeding at home, she has finished one one-thousand piece puzzle and one seven-hundred-fifty piecer. it amazes me how focused she gets. She started a new one a few days ago.
Another thing that seems to help a lot is reading a good book. When we brought her home from college, she read "The Fountainhead" in about a month and a half. The book is nearly the same size as a dictionary! She loved it though, and it really gave her a sense of accomplishment to have finished such a read. Music and movies are also good. Whenever she seems weak and isn't up to doing anything, I always suggest we pop in a good Disney flick to make her feel better.
Now that I'm going to be home for the summer, I've taken my daughter out shopping and such a few times during the day. Just getting out of the house for a bit seems to alleviate some of the pressure as well. Sometimes I drive her down to the seawall, as she always loved driving down there herself. I know its not quite the same since she isn't the one behind the wheel, but I can't let her drive in the state she's in. She still needs to gain a good ten pounds before I'll even think of letting her behind the wheel of her car. Once my daughter gains a few more pounds though, I plan on taking walks after dinner and letting her go over to the playground. She may be nineteen, but sitting on the swings at the park has always been one of her favorite things to do. I admit, I enjoy it myself. Its really relaxing. I have found that the most enjoyable things for her are the things from her childhood. I suppose it reminds her of when she was happier, pre-eating disorder/depression.
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EB
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Registered: March 14, 2008
Posts: 600
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| | June 28, 2008 at 09:59 AM | Reply with quote | #16 |
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Dear Jodie
I remember the beginning of recovery well; my d would curl herself up in her room, sobbing and in pain (physical/emotional) saying she wanted to cut the food out of her that we had made her eat. I don't remember any activity that took her to a place where she could relax and be calm. Watching tv/movies together helped a little as did sitting with her telling her that we understood how difficult this was for her but that it would pass and that ultimately she would be happier (btw, the house and the ironing still haven't recovered from this time - it is all consuming for a while!).
It helped me to learn that I couldn't respond to her anxiety/pain with more of my own - I had to believe that this is temporary; it seems to help both of us if she doesn't see how upset it was making me (she often said early on that it would be better to go back to how it was before because she was happier and now it was ruining my life as well).
The weight gain curve seems also at times to be erratic and inexplicable - our dr tells us that the plotting of her weight will be more obviously meaningful in time to come and that small gains/losses in the meantime are normal for all of us at different times of the day and week and for a myriad of reasons. My d beats herself up about both gains and losses especially if she sees that it affects me; I just make a note to myself about how I can up the calories if there is a loss - tomorrow is always another day when we can get it right.
Stay strong; it does get better. |
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Malia
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Registered: July 31, 2007
Posts: 1,044
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| | June 28, 2008 at 01:55 PM | Reply with quote | #17 |
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Jodie--
You have gotten such a wealth of ideas! I have only one small thing to add--
Mari mentioned a heating pad for the tummy and peppermint oil. I encourage you to try this, and while it may sound old-wives-tale-ish, it actually makes good sense. The heating pad increases blood flow to the abdomen which in a roundabout way aids digestion, as does being fairly inactive--especially if sitting upright as opposed to lying down (blood flow/energy and enzyme delivery not being diverted to the extremities and all that, plus the influence of gravity helps too). Peppermint oil has been regarded as a digestive aid for centuries. I can't tell you off the top of my head what, exactly, peppermint oil acts on (I'd guess meat protein), but I can tell you it helps many people. If peppermint oil plus heating pad don't totally do it, you can add digestive enzymes to meals.
If this sounds like a broken record, it's because I just pushed digestive enzymes on another thread. (I am not a dietician or nutritionist--just an interested researcher.) I'd suggest Solgar's digestive enzymes, available at many health food stores, or you can order them. I like these particular ones for several reasons. First, they aren't a single enzyme or a very few enzymes, but pretty much the whole recognized range that you would find in a healthy digestive tract. (No affiliation with Solgar, just a customer.)
Different enzymes break down different things present in our foods. If foods aren't chemically broken down into the components our bodies can absorb, appropriate absorption doesn't occur. If the body doesn't produce enough of the needed enzymes quickly enough after eating--a problem that is a hallmark of malnutrition and certainly of starvation--stomach pain, bloating, constipation, heartburn, even diarrhea or compacting of the intestines can result because some of the food isn't rendered into an absorbable form and languishes in the stomach or the intestines.
Unfortunately, some general docs hear pain, bloating after eating, etc, and suggest (or prescribe) antacids, or acid inhibitors or reducers. This may be the exact answer for the majority of their patients, but for a malnourished patient, the impaired ability to produce sufficient stomach acid is often the norm. The symptoms of too much acid and too little are almost exactly the same as typically reported by patients.
Soooo: Digestive help (rather than suppression) works two ways for your recovering child. First, it helps to reduce discomfort due to currently slowed digestion by speeding up digestion, and, second, it helps to render the food coming in into forms that can be absorbed and helps make all that nutrition count. Oh, and it lessens the incidence of constipation.
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | June 28, 2008 at 02:04 PM | Reply with quote | #18 |
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SAFETY ALERT:
A parent here on the forum wrote in to report that his daughter developed a possibly irreversable skin condition from over-using a heating pad directly on the skin during recovery.
CAUTION.
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Malia
Mentor
Registered: July 31, 2007
Posts: 1,044
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| | June 28, 2008 at 02:13 PM | Reply with quote | #19 |
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Oh. Laura's safety alert sounds vaguely familiar. I would think that 1/2 an hour on low heat after meals would be safe. Maybe a clinician would guide us, here? |
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | June 28, 2008 at 03:07 PM | Reply with quote | #20 |
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Malia,
There shouldn't be a skin reaction if the heating pad is wrapped in a towel. Putting directly on the skin is the problem. This is true for hot water bottles too. By the way, applying heat to the back or neck can also relieve tension/anxiety for some patients.
Some folks also believe in aromatherapy, such as lavender. Our d liked a neck wrap that is filled with lavender and can be heated in the microwave. |
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kmtmb
Registered: May 13, 2008
Posts: 53
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| | June 29, 2008 at 08:10 AM | Reply with quote | #21 |
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During the winter my d would have to use the heating pad quite a bit in order to stay warm. Sad I know, but we live in New England so it gets a bit chilly. Even when the house was seventy-six degrees, she would be wearing a sweatshirt, thermals, and sweatpants and still need the heating pad or else she'd be shivering. She would feel so cold, it scared me. My husband and I had to take her to the hospital one night and they actually wrapped her up in blankets they had heated in the microwave just so they could draw blood.
After prolonged use, the heating pad gave her some rather peculiar reddish-pink streaky marks on her back. I think that using the heating pad brought blood vessels to the surface of her skin, and using it so much was causing them to remain there. Of course, heating pads are not really supposed to be used like personal space heaters. So she had to take a break from the heating pad and start wrapping herself in a fleece blanket instead. After not using the heating pad for a few weeks, the marks went away. Now she only uses it when she needs to sooth aches or pains.
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CarolinG
Mentor
Registered: Sept 05, 2007
Posts: 259
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| | June 29, 2008 at 08:44 AM | Reply with quote | #22 |
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Paw paw or papaya are also great natural digestive aids. PP thicksakes
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