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iHateED

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Reply with quote  #26 
Setmar and Kassie, 

I hope you both have a good experience at UCSD.  My family attended two years ago and I want to share some of our experience to help you prepare.   You are provided with food for the first day (Monday) but need to bring your own food (breakfast, lunch and two snacks) for the rest of the week.   We stayed in a hotel with a free breakfast buffet.  Each morning, I would go by myself and make three breakfast plates for me, my D and H.  Lots of eggs and bagels with butter and cream cheese.  There is a microwave at the program to reheat.  I would also grab a few items for snacks each day.     During the program, you have space in the refrigerator and a cubby to store as much as you need for the week.  Some families brought a loaf of bread and lunch meat and made sandwiches each day for lunch.  If you haven't started smoothies, please get them going during the program.  It will make it easier for you to continue when you get home.   Please ask me if you have any other food questions.

The therapists were great and made us realize some of the mistakes we were making as parents.  We were very reactionary parents but if anything good has come from this illness, it is that both of us no longer go off the rails immediately.  We really think through our thoughts before responding to our D's about anything now.    So on the first day, when our D didn't eat her morning snack, we said, "now after program we will just go back to the room, we won't do anything fun in town."   Lunch came and we were surprised that she didn't eat any of it.  The wonderful therapist pulled us aside and said that we need to reframe our consequences into sometime positive.  They suggested that we offer her a half hour of fun time after program for each meal and snack she completes, so a total of two free hours of her choice if she ate both meals and snacks in program.   The first day, she only earned 1/2 hour but the rest of the week she earned two hours each day.  It was a great incentive for her to complete the meal so that we could sight see in the area. 

The therapists will help you develop a written contract for you to follow when you get home.   Our contract was so long to cover all scenarios for our D's daily activities, such as school, after school clubs and weekend activities.   It really helped to have a written plan which was easy to follow and everyone knew the rules.

Please ask me any other questions you may have about the program.    It really helped our family.   Best wishes to you both. 
NELLY_UK

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Reply with quote  #27 
I am from UK and my d was 12 when she got bulimia. Clinicians advised us to back off against our instincts to feed her and stop her vomiting. They said we were causing the stress.
You know your son better than anyone, never forget that fact. You do know what is best without the training. He needs to eat regularly and his shape will change as he grows. That may be stressful for him for some time but he is growing.
He needs close monitoring sit with him after meals , ensure he doesnt go to the bathroom after eating, ensure he doesnt binge.
This place is the best resource as well as books.
What have you read so far?
He is young, act fast and hard and you will beat this illness. Its not his fault or yours, it happens.
Great that you are near UCDL. I hope you get some great help. Bad help is worse than no help.
You must get some support for yourself. You will need it.
Good luck, believe in yourself! X

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NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
kassie

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Reply with quote  #28 
Setmar,

Ugh! I was so mentally an emotionally drained when my d was IP that I didn't realize I needed to call UCSD back to firm up for August 1 program.
Actually, I thought that I had but I get confused easily these days. But, I just sent deposit email in and pending our phone interview and medical clearance we are down for August 29-September 2 program.

Which my h and I think may be better as it is right before school starting. Since comment by girl at school kicked off this relapse.

I am bummed to not meet you but if you get moved to August 29 let me know [smile]

IhateED-- thanks so much. Good to hear such feedback. My h wasn't sure if we needed to go since we are at PHP right now. But d will be D/C from here soon and I really think a whole family week will be a great way to start school year. Plus, I have gotten MUCH better at not being reactionary but still could use help there and h even more so.
Our insurance won't cover it but can't put a price on our kids. Hopefully it will pay dividends in the future.

Do they help you find affordable hotels?
We are coming from east coast-- do you know what airport is best?

Thx!

Kassie

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iHateED

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Reply with quote  #29 
We are east coast too!  We flew from Newark, NJ to San Diego International Airport and rented a car.   We stayed in the Marriot Residence Inn in La Jolla which was about a 10 minute drive to the program.   The room had a full kitchen though we did mostly take out and we even ate some meals by the shores in La Jolla.  The airport is probably a 20-25 minute drive to the hotel.  Others on this forum have rented houses or condos through the website VRBO which worked out well for their families.  Some have stayed at the Ronald McDonald House although I don't know any details to share with you.   I think that it may be free if you qualify, which the ED program does qualify.   This may be about 30 minutes from the program although it may have moved locations since last I heard.   The free breakfast at the hotel was nice because as I said, I packaged up three breakfast meals each morning and plenty of other items for the two snacks.   

Right near the hotel is a large Whole Foods Market and two other large food stores, along with a CVS and movie theater, and many other shops. 

There is a lot to do in the area, so use them to your advantage if you can.  My d mostly wanted to sit on the beach and watch the sunset each night over the water!  There are lots of areas to walk by the ocean in La Jolla Shores and Mission Beach.   There is also the great SD zoo and Sea World too. 

Good luck and please ask any other questions you may have! 
mnmomUSA

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Reply with quote  #30 
Hi.  We did UCSD last summer from the midwest (Minnesota), and flew directly into San Diego airport. We found that most convenient for us.  Instead of a hotel, we rented a small 2 BR apartment on Airbnb.  It was important to us to have our own cooking facilities to avoid having take out food and restaurant meals for an entire week, which for my D at that point would have been very very difficult.  We found from a price perspective that we could do better renting a condo/apartment than having a hotel room.  It also provided a bit more privacy "just in case" D got a bit, eh, emotional (polite way of saying an ED rage).  :-)  The place we rented was in Pacific Beach, and was about 20-25 minutes away from where the program was done, depending on traffic.  It also happened to be located very close to a Costco, where we shopped several times to get things for dinner and breakfasts. 

You bring your own breakfast every day except Monday, and you are also responsible for lunch (except for Monday).  Snacks: our experience was that they had  a good variety of snacks available.  We were always able to use theirs.  For lunch, we purchases sandwiches and smoothies from the small deli located in the basement of the building.  Prices were reasonable, and service was quick. The owner was super nice and even added 2T of canola oil to D's smoothie to make it more caloric.  

The only thing about the Ronald McDonald house is that you won't know if there is room for your family until the last minute (like the day or two before you arrive).  That was just WAY too much uncertainty for me, so we opted to rent a place instead.  This is the place we rented, and it looks like it has good availability for August.  https://www.airbnb.com/rooms/4344222?guests=4&s=ziz0otmH.  We were three people, and it fit us fine.  Even had a washer/dryer which meant we could pack considerably lighter.  Nice quiet neighborhood.

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D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
kassie

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Reply with quote  #31 
Oh my goodness! What great info!!!
Thanks so much. I am a planner so this is great.
Kassie

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trusttheprocessUSA

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Reply with quote  #32 
setmar - So glad you had the interview with UCSD and it went well.

This illness is hard and the recovery is hard --- maybe harder. Do not let that scare you or take you off course. If someone with restrictive Anorexia (person who restricts his intake of food) is allowed to restrict they seem happy but require them to eat and it can be unbelievable. Your boy must eat to get well and requiring that may make him anxious beyond any anxiety you've seen before. That is part of the recovery process. My son did the same thing. He threatened to kill himself too. I stayed very close to him 24/7 for many many months. I could not allow him to be alone with his thoughts - His "thoughts" were the monster in his head. My son was prescribed Zyprexa and I feel like it was a miracle drug for him.
A few things to know:

The highly anxious behaviors do not last forever as he gains weight he will improve.
Serve him high calorie / high fat foods with a small footprint ie. steak, peanut butter, whole milk or whole milk yogurt, etc.
A boy often doubles in size as he grows into a man. My son did. He had to gain weight to grow in height. 
Weigh him every week to be sure you are feeding him enough (if you are feeding him enough he will gain weight).

 August 1 is 37 days away - that can be a very long time when starvation is present. You need to do everything you can to help him eat; every meal, every day.

Here is what I fed my son while he was restoring and growing at the same time: We did 9am (breakfast with whole milk yogurt), 12 noon (lunch sandwich with mayo or cheese and with 8oz whole milk), 3pm (high calorie snack with whole milk yogurt) 6pm (dinner with red meat and 8oz whole milk) and 9pm (high calorie smoothy). If he cant eat the meal he needs to drink Benecalorie + (2 bottles of benecalorie if whole meal is not eaten and 1 benacalorie if half meal is not eaten. 
Do not be afraid of high calories he needs them to recover.

Keep going your are doing a great job.

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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
setmar

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Reply with quote  #33 
Kassie- so bummed that you guys won't be there August 1st. Although we are not confirmed yet either. She was supposed to call me yesterday to let me know but she never did.

Thank you everyone for the invaluable information you posted, I am learning something new every day. I have made so many mistakes! I don't want to focus on that right now though and just focus on feeding him and fighting the ED with all my might. I do have have a few concerns that I would welcome some input on:

- I noticed that some of you went to the UCSD program a couple of years ago and sounds like it was very helpful. However, the fact that you are still actively on this forum leads me to believe you are still struggling? I don't have any unrealistic expectations that everything will be back to normal in a couple of months, but I am concerned as to how I'm going to handle things once I go back to work and he goes back to school.

- when my s is mid ED rage and he's hitting me or my d, destroying things around the house and telling us he wants to kill us, what am I supposed to say or do. I try to stop him physically but it's hard. Should there be any consequences to his actions? My d is very confused that I don't punish him for his actions and I don't know what to say to her. ED parenting is very different than "normal" parenting in every possible way, but if it's effecting your other child, what do you do?



mnmomUSA

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Reply with quote  #34 
Setmar, I am here to help others who follow behind.  My D is in solid recovery, but I also don't doubt for one minute that it is "over."  The relapse rate is high.


UCSD, for my family, gave me renewed energy to continue the fight (we were over 2 years in when we went).   For lots of us, it is a long battle against a persistent enemy.  And, it is hard to keep your energy level high and optimal for that sustained period!  But, UCSD certainly helped us a lot!  :-) 


Oh, and we don't call the things we did wrong, it's just "feedback."  Feedback, not failure.  

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D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
kassie

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Reply with quote  #35 
Setmar,

We had big issues with violence of our d.
She destroyed everything she could get her hands on.
ED therapist suggest she make a bucket of safe things to break. Bubble wrap, old therapy putty,
Candy canes, sticks to break, paper to tear up.
This helped to a point but would be easier for us to hand her the bucket then wrestle anything out of her hand.
When he is calm, tell him in no uncertain terms that it is unacceptable to destroy anything other than what's in the bucket and come up with a meaningful consequence for him. Us was phone-- but we have 12 y o d.
Also, she would take off so we started telling her we'd call the police. And she knew we would.
Can also call police if he is too violent. I read somewhere here to prevail local police and clue them in if needed.

I had to bite my d on her hand really hard to stop her from sinking her nails into my arm while I was driving and she was trying to jump out of car to run home as her ED told her she couldn't eat or drink until she ran 1.5 miles. Luckily my h was home and he met us in the street to grab her since she did manage to jump out of moving car.
She was in ER within the hour. Then IP 2 weeks.

Also, we got to point we didn't care if our neighbors knew so we went to direct next door neighbors and told them situation ( we have lived there 12 yrs with same neighbors.) When I apologized for the yelling and screaming coming from our house for months,1 neighbor was actually relieved when I told him it was ED rage and that we were not beating her.

We also held her down once for 30 mins to stop her from hurting herself but for us was a mistake as she spent an hour crying and in a ball saying she couldn't trust us anymore. We have repaired that since then.

It took us a while to get up to speed and not let her destroy stuff. Although not foolproof it has gotten better.

Also, it got to the point we would notice the days our d didn't want to die, but since this refeeding that is almost gone. I also think the meds are helping her too.

Hang in there.

Kassie

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hopingforthebest

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Reply with quote  #36 
Hi Setmar, I only pop in occasionally and I saw your post. We went to UCSD in 2009 when my d was 21. There were two other families and one of the kids who was ill was 9 years old. Many of the behaviors you described in your son were evident in this little girl too. UCSD has seen many young ones and are excellent with all ages. This  9 y.o. particularly liked Dr Kaye's talks to us as he explained the biology of what was going on. And we ALL loved his encouragement that our kids could get well!  I want to tell you that UCSD helped to save my d's life, along with this amazing forum, and I have such respect and appreciation for the fine UCSD people. I stayed in contact with the mom of the 9-year-old for a number of years and her d continued uphill to full recovery after the program. The last I heard from her was about 2 years ago and her d was full of life and had grown SO much!! My d also has gained full recovery, graduated from college, got married, and is currently on a vacation in Portland, OR because "they have the most AMAZING food trucks there!" 

One thing I want to encourage you with...starting Magic Plate before going is such a plus. I think that gives you a head start and the coaching from the UCSD staff will help you push forward. Good job, mama!

Our UCSD experience gave us such confidence to go forward, in a united way, to help our d get well. I am so grateful you are going there to get the support and resources I believe they will offer you. You've made such a great start, even though I know how challenging this is! Sending you lots of love and cheering you on. Your son is so worth this hard work!
iHateED

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Reply with quote  #37 
Setmar,   

You posted ....   "I noticed that some of you went to the UCSD program a couple of years ago and sounds like it was very helpful. However, the fact that you are still actively on this forum leads me to believe you are still struggling? I don't have any unrealistic expectations that everything will be back to normal in a couple of months, but I am concerned as to how I'm going to handle things once I go back to work and he goes back to school."

I stay here on this forum to help others who are struggling.  I didn't know about this forum when  my first D got ill and only learned about it a few months into my second D's illness.   Oh how I wish I had known about it from the beginning.  I didn't know that ED's are biological brain disorders and a genetic trait.  I didn't know that my second D would be at a higher risk because it runs in families.   Both of my D's (ages 18 and 21) are in strong recovery, but I will always be on the lookout for signs of ED creeping back in.  I myself still have some PTSD around the whole nightmare of refeeding and violence.   I stay here to help others with the hope that someone will benefit from my mistakes and to understand what it took me so long to believe -- that food is medicine!   Food is the first and most important step in beating this illness.  Getting back to the growth curve and then a few pounds higher is so important.   So many professionals (medical docs and therapists) still don't understand this and it makes me so mad.  

As for the violence you see, we too had violence with my second D.  The therapists at UCSD told us we needed to be firm about the consequences for violence.  We would threaten to call the police but we never did.  They told us our D knew we were all talk and no action!   About a month after being home, when the violence wouldn't stop, we did call the police.  They came, weren't much help, but we never had to call them again.   My D was so embarrassed and mad at us for calling them but it worked.

Hang in there.
hopingforthebest

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Reply with quote  #38 
iHateED, yes, thank you for the word about being ever vigilant! I didn't mean to imply that recovery takes the same course for all because that is simply not true. Just sharing our story. Thanks!
mjkz

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Reply with quote  #39 
Quote:
- when my s is mid ED rage and he's hitting me or my d, destroying things around the house and telling us he wants to kill us, what am I supposed to say or do. I try to stop him physically but it's hard. Should there be any consequences to his actions? My d is very confused that I don't punish him for his actions and I don't know what to say to her. ED parenting is very different than "normal" parenting in every possible way, but if it's effecting your other child, what do you do?


I don't think ED parenting is all that different than normal parenting.  Different people handle violence differently with some accepting it during refeeding and others not.  I accepted no violence whatsoever and if I had to do it all again, I would stay with that.  All of our kids are going to have learn how to deal with overwhelming emotions and high emotion states.  Acting out violently during those times at least to me felt like I was setting daughter up to fail because no place else in life is going to let her act that way no matter what her emotional state.  No ED program that my daughter has been to (and there have been many since she would just stop eating and nothing mattered more to her than not eating) allowed any amount of violence towards other patients or staff.  There were always consequences to acting out violently just like there would be for any other kid.  First and foremost though was safety of both the kid and the people around her or him.  I found using the police quite effective but I also talked to them before I ever called to let them know what was going on and what I needed from them.  I also didn't call the police if my daughter threw a dish across the room either but if anyone's safety was at stake, I didn't hesitate to call.  Any consequences came after she had calmed down and I always tried to make it how can we handle this better the next time but she also replaced anything she broke whether it was mine or anyone else's. 

I always found keeping the expectations consistent to be key with my daughter.  It was too confusing to her for me to let her act out to get out of eating or deal with the stress of eating yet not in other situations.  I can see why your d is confused when your son does not get consequences for his actions.  It was too confusing to my daughter too especially during refeeding when we were out in public and all of sudden her acting out was not okay there but it was fine at home.  I found keeping the expectations consistent and clear to be the easiest on both of us.

You have to find what works for you and you will certainly get help dealing with violence at UCSD.  Some on here allowed it and things worked out in the end but a few who had kids with comorbid conditions allowed violence and then regretted in the end. I just wasn't willing to allow my kid to injure me, herself or anyone around us even for the sake of eating.


kassie

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Reply with quote  #40 
Setmar,
Thinking of you. Have you heard back from UCSD?
Kassie

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setmar

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Reply with quote  #41 
We are confirmed for UCSD August 1st. I am trying to stay hopeful that this will help us tremendously as we need help desperately. This week was very tough with magic plate. A lot of resistance and a lot of meltdowns. I am feeling very weak and emotional but I know I have to stay strong. I have so much respect for all you tough moms out there, I just don't know how you've been doing this for so long.

I really HATE ED!!!
sk8r31

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Reply with quote  #42 
Really glad to hear that you are confirmed for the UCSD program at the beginning of August.  You'll gain skills and tools and confidence to continue the ED battle, through to success in helping your son to recovery.

In the meanwhile, you've got 3 weeks or so of challenging meals and behavior to get through.  Can you put self-care on the list too?  It is so very important to take a few minutes each day to do something just for you, that will help to recharge the batteries.  Whether that's a bath, a walk around the block, a coffee or adult beverage with a friend...whatever you are able to manage...you need your strength, & you need to nourish your soul for a few minutes per day.

Eva Musby has some great videos to help with challenging meals, including a guided meditation that can help you prepare before a meal, and decompress afterwards.  You might find it useful, especially in this 'in between time' while you are waiting to go to UCSD.

Sending strength and support,
sk8r31


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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
kassie

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Reply with quote  #43 
Hi setmar,

How did UCSD go?  Did you and your family find it helpful?  How is you S doing?

we still have 3 weeks until we go.  Every time I second guess us going, my D has a meltdown or outburst and I am reminded of why we are going.  She took the news ok at first --had to tell her for the phone interview. but then next day she had major meltdown over it.  She is better and more on board now.  We have planned to go to Sea World and try to do other fun things while we are there.

Was thinking of you and your family.

Kassie 

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