F.E.A.S.T's Around The Dinner Table forum

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starvingmarvin
Quick background - our D has anorexia, had two hospitalizations (Nov. '12 weight restoration and vitals, Sep '13 for vitals), went to family therapy Nov '12-July '13 (useless, she doesn't fight over food, family lifeis pretty benign) and residential treatment (Sep '13-Oct '13). 

She came out of residential pro recovery.

She is currently in a PHP/IOP new outpatient treatment program.  Insurance moved her to IOP approximately weeks ago and is now about to end. For two months she has complained the only value she gets out of this program is the individual therapy, the group therapy she feels is a waste of time.  Since the program is new, they are ironing the kinks out and have no success stories to point to.

Since being in this program, she is on the fence with recovery.  In the same sentence she will breathe both pro and anti recovery statements.  She is definitely stuck.

I am frantically getting together a new team to work with her after insurance cuts the IOP "lifeline."  We have some good leads on therapists, but this is a hard time of year to find someone.

I introduced the idea of therapeutic boarding school to her yesterday.  She had not even thought it was a possibility.

Are we jumping the gun?  Should we get the new team in place and see if intensive individualized therapy works, and look at the boarding schools on the side? Ship her off? Comments?
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MidWestMom
Marvin:

Kudos for getting to this point - what a roller coaster you've been on!

Your email doesn't give a lot of background about your home situation or plans.   Are you doing FBT / Maudsley at home?  Using FBT, having a therapy team in place is secondary to consistent care and feeding at home.   Are you, and others in your 'home' team prepared to handle one meal, one snack at a time?    There are lots of resources here that can help you get ready to muster through this critical part of your D's recovery.   

It is very typical that your D has mixed thoughts about recovery - this is to be expected, and it is not realistic to expect that she will come out of any hospitalization program ready to eat independently.  She needs the constant, steadfast guidance of her parents for every meal and snack for an interdeterminant period of time.   

Intensive therapy is secondary to healing her brain through regular nutrition and weight restoration.  There is a lot of evidence that the brain heals more slowly than the body -- weight restoration itself is a milestone, but does not represent a full recovery.  


While I am not familiar with boarding schools - I doubt that they are structured to provide the specialized care and attention that your daughter needs to continue her re-feeding and recovery.   It certainly isn't consistent with FBT treatment. 

Good Luck!!!
17 yr old d dx RAN in June 2013.   W/R in Jan. 2014; as of May 2014- independently and doing well.  Read more at Paula-Ponders.com
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starvingmarvin
Hi MidWestMom,

At this time the only team we have is through our PHP/IOP program.  A therapist, psychiatrist, doctor, nurse practitioner, and nutritionist are supplied through the program.  Once we leave the program, those resources are gone.

I feed her breakfast 7 days a week.  In IOP she does 1 meal and a snack Monday-Friday.  We handle all meals and snacks on weekends.  She went back to school 4 days a week after residential (the only person in her PHP/IOP program to do so).  I go to her school 4 days a week and eat lunch with her.  For meals at home we watch her for an hour after mealtime.

We plan on returning to our D's doctor (who interned at an eating disorder clinic).  She will be meeting with two individual therapists next week.  Still need to find a nutritionist (have not been happy with her last two outside her current program) an psychiatrist.

It is good to hear that it is normal for the individual to still be on the fence at this point.  The staff at the program is getting frustrated with her being "stalled," which is leading to both us parents and our D feeling *we* are doing something wrong or there is something wrong with our D.
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SeminarLady
I am sorry about your daughter.

My now 26 year old daughter was also hospitalized twice (and in 5 different treatment facilities overall) = all in California.

She has been out of formal treatment for her anorexia for over 3.5 years now and is doing pretty well outpatient.

Things that I've learned:

1. Weight matters - when my daughter is at strong target weight, she has much better ability to stay on a recovery track.

Weight restoration should be priority number one when dealing with anorexia.

2. In California, there are very good - okay - to terrible treatment programs and treatment providers.

One has to take care to pick out good programs and treatment professionals.

PS - In our experience, there are few 'very good' ones.

Choose carefully.

And sometimes - 'less is more'.

When you have too many or the wrong people involved, the person in recovery can get unhelpful and often mixed messages.

3. Each person is individual.

Since our daughter has been weight restored, she does better with parental support (help with food choices, shopping, cooking, etc.),  individual therapy, yoga, socializing and productive, meaningful work.

While her road to recovery has been rocky, she has managed to stay out of hospital and formal treatment and stayed gainfully employed for 3.5 plus years now.

Hang in there.



Cathy V.
Southern California
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MidWestMom
Marvin:

You are doing such a great job... Please consider that YOU (and other family members) are the team leaders for your D - regardless of how many professionals are (or are not) on the team with you.

That revelation was a major milestone for me in my D's journey.  At one point it became clear to me that  the meal plan the professionals had provided was not working for our D, yet I was timid about challenging it.  Someone here reminded me that I was the captain of the team... and should act accordingly.  Once I felt empowered, it made all the difference in the world. 

While it can be very helpful to have a solid professional team working with you... there are also many horror stories where the professionals have hurt more than helped.  

You should also be comfortable that the individual therapist is going to 100% support your feeding approach at home... so many of them 'cave' to the ED by giving more choice and independence than is appropriate.   ED LOVES  sympathetic therapists.  You know what your D needs, and your D should eat what you give her - If the therapist / nutritionist doesn't support that - you're better off without them. I would also suggest that a nutritionist is (at best) a consultant to the parents... versus to your D.   In our case a detailed 'meal plan' from a nutritionist led to a lot of bean-counting (literally) that only served to extend and prolong the ED mindset in our D.

I also recall the feeling of panic when my still-very-sick daughter was left completely in my care, without the safety net of the hospital or residential program.  Initially I faked a confidence I didn't really feel.  Now I am much more confident in my/our ability to stay the course and am able to handle the inevitable ups and downs of the recovery process.   
  
We all get frustrated with the stupid, STUPID  ED... but you are truly saving your daughter's life.

You can do this!!!
17 yr old d dx RAN in June 2013.   W/R in Jan. 2014; as of May 2014- independently and doing well.  Read more at Paula-Ponders.com
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dms
Where in CA are you located? Our daughter was in a relatively new program as well that clearly blamed the parents; she is no longer in that program and found a great private therapist although she is relapsing and may need to be rehospitalized.
I noted the message from Seminar Lady about the different strength of programs in CA - Seminar Lady, can you please give specific information based on your experiences, beyond the great things we always hear about the UCSD program?
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starvingmarvin
DMS - We are in the SF Bay Area.

Thanks for everyone's kind words.  I think the message that there are good (for our D, may not work for others) therapists/programs and a lot of mediocre/not appropriate ones, as well as knowing our D and making appropriate decisions has really helped me today. 

Good news, we will be interviewing two new therapists early next week.  One more looks like they can get us in for an initial conversation as well.  I will keep my fingers crossed that one will be the right fit for the next part of the journey.

We spent some time looking at therapeutic boarding schools.  Seems non-denominational ones can run $6-7K plus per month.  My hope is that will be the last resort, these places seem to want a minimum year commitment.
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Cherryusa
Starving,

We did some research into theraputic boarding schools a couple of years ago . Our d is now 17 and she is doing much better but struggling again yet not as extreme as in the past. Beware the claims of these facilities for managing an eating disorder. Some claim they can manage monitoring eating ,purging and therapy but don't actually have staff trained in up to date evidence based treatment for Ed's.
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WeNWinning
Have you spoken to the folks at Stanford where Dr Lock is?  Not far from SF bay area.
Dr Lock wrote the Maudsley book along with Dr Le Grange.
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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dms
Hi again, so very true, although all our kids suffer from the ED that has gripped their brain, there are differences in pre-existing personalities and/or mood disorders that make it necessary to individualize the treatment path.... so I wish you well on that path, which sometimes can be muddy and can take some trial - and error - before finding the road that works...  We are in the Los Angeles area, so wondered if your daughter had been in the same negative day program that ours was in 2 months ago. 
We also were overwhelmed by the cost of therapeutic boarding schools, and as also mentioned above, they can't  monitor for purging.
Great suggestion above to reach out to Stanford, we considered going up there.
 In this season of the holidays that celebrate miracles, wishing some for you and your family.
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starvingmarvin
We have used the folks at Stanford in the past.  Their family therapy approach (for us, maybe not for all), provided no results.  Our family doesn't fight, is on board to do whatever it takes, and our daughter doesn't often fight her meals when monitored by a parent.  We got a gold star fro being the only family that showed up every week, both parents, on time.  Sadly, gold stars don't get you much. [frown]

After 8 months of family therapy, all parties agreed it was time to move her to more intense individual therapy, and the therapist mentioned studies shows that cognitive behavior therapy can be as successful as family therapy for anorexia.  Wish the therapist had said something 8 months prior. 

Being new to all this, we figured it had to be doing some good, the experts told us to do this.  We are learning to trust our gut.  That is what makes us nervous about the boarding school idea.  She may make progress in a 24X7 environment, but we will have no idea what is going on.  Our D was accepted to a few academic boarding schools for High School, and I nixed the idea.
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WeNWinning
Key to recovery is ongoing weight increases to adjust for age so it is possible that it's time for some increase in weight.  that lower weight might account for the stalling you  mentioned.

It's not fully clear what you feel is needed and why - what is stalling?  her ability to eat fully on her own and keep weights within her accurate range?

What is it that you are hoping a Boarding School can do?

From our experience, having clinicians set too low of a weight and pushing my D too quickly into eating fully independently is what prevented her from recovery in her teens and into young adulthood.

It is a long term process and always needs to be reassessed, what is missing for your D.  It might just be that the weight range was not set accurately.

without that, there is no brain healing and ED becomes more entrenched.

It is also very often a long term process for them to learn how to eat fully independently, much longer than the standard Maudsley approach.

it needs to be done in slow steps and consolidating each small gain along the way.

I don't see how any Boarding School can provide what is needed for long term recovery
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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starvingmarvin
Thank you wenWinning for (like everyone else here) asking good questions and taking time out of your busy Christmas Day to respond to my post(s).

Her PHP/IOP and residential programs pushed her target weight higher than her pediatrician had recommended for the 10 months prior to her last hospital visit+residential+PHP/IOP.  Both of her hospital visits were triggered by poor vitals, not excessive weight changes.  Her current target range is higher than we think is okay, but we will defer to the experts and have never said a word in front of her about our thoughts.  I did consult with her pediatrician yesterday (who she has not seen in a few months) and she agrees with the new target and will work with that range when we return to her care in a few weeks.

The stalling is in her mind.  She is clinging to the idea that, once she is not constantly observed, she can go back to her old ways and has voiced that idea many times. She complains of being fat, not caring about what happens to her as long as she is skinny, etc.  As parents, we feel her current program is not addressing the underlying issues that are still driving her towards craving destructive behavior.  Our thought is boarding school, with its 24X7 environment, might be able to break that hold the disease has on her.  Asking that question of me makes me think it really is an individual therapy issue that can be addressed here or at a boarding school.  My preference is to have her here under our watchful eyes.



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dms
Well, I'm beginning to wonder if 15 is some sort of magical age of needing independence  at which family systems work doesn't help the way it seems to for younger or older...seems a lot of us with kids who are 15 at time of onset of the disease share so much in common on this forum -
I was thinking about your phrase "clinging to the idea".... we also have a healthy family, no family history of eating disorders or other psychiatric disorders, and open communication of feelings amongst everyone, but it sounds like your daughter, mine has  some switch in her "all or none" type of brain that has led to such compulsive behaviors that her thinking and feeling brain recognizes as self destructive so comes and asks for help,  but she just can't turn it off and is as scared and sad about it as we are....and every day she misses the life she had with friends, skating, dancing, and community service. She is, however, maintaining well in school because she was already in an online school but interestingly, can focus on that and continue to do well.  Boarding school is not an option also because she has documented multiple severe food allergies (confirmed by UCLA specialists in blood testing) that makes her nutritional needs difficult to meet, and a boarding school simply wouldn't be able to provide for those necessary restrictions. We also, however, like you, believe that our love and support is necessary, but maybe in a different way from the Maudsley approach.   We are hoping that the positive individual therapy she is currently attending, combined with better psychotropic medications for OCD can make the difference...although it likely will take another inpatient hospitalization to help her break the OCD cycle again.
By the way, have you read any of the books by Aimee Liu, who eloquently addresses the underlying issues of eating disorders, like the compulsive brain... I found  Restoring Our Bodies, Reclaiming Our Lives to be an inspirational blend of personal stories of recovery combined with articles about the science of the disease. Don't think its right for my 15 year old to read yet, but it gave me great hope.
Our thoughts are with you as we all find the beauty and miracles of today!
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SeminarLady
We are in Southern California.

As to No Cal, there is an ERC (Eating Recovery Center) affiliated with the excellent one in Denver, CO.

They are in Sacramento and Fresno.

http://www.eatingrecoverycenterca.com/treatment-centers/

As to the Bay Area, you have some places that I haven't heard the best about (I.E. Bates, New Dawn).

One treatment professional up there - Doreen Samelson - who is a psychologist with Kaiser in Tracy and who specializes in eating disorders - really impressed me with her knowledge in reading her book Feeding The Starving Mind.

http://www.permanente.net/homepage/kaiser/pages/c11993-top.html

http://www.amazon.com/Feeding-Starving-Mind-Personalized-Comprehensive/dp/1572245840

I wonder if Doreen could give you a referral to someone who knows as much as she does about eating disorders and who is outside of the Kaiser system (unless you have Kaiser)???

Doreen tells the story at the end of her book about a woman who suffered with ED for years, and then recovered after getting the right therapy.

I do think that your instincts are right about therapy.

You tried the FBT/Stanford approach and it wasn't enough for your daughter.

Now it might be time to line up a therapist who can provide the help that will fit your daughter's needs.

That type of therapy might be CBT, CRT, DBT, ACT or something else.


...

You say: "The stalling is in her mind.  She is clinging to the idea that, once she is not constantly observed, she can go back to her old ways and has voiced that idea many times. She complains of being fat, not caring about what happens to her as long as she is skinny, etc."

This behavior is very common with many in recovery for longer periods of time than we parents think should be.

Recovery takes lots of support from family/loved ones and really good treatment professionals involved.

I would not recommend a 'therapeutic boarding school'.

Your daughter is likely to be best served close to home and in your home, unless she is medically compromised or for another reason, she needs to be IP.

Your instincts to keep your child home and under your watchful eye are good.

...

As I said, my daughter was hospitalized twice.

She spent two Christmas' in a row in hospital, in dire straits, refusing to open presents, being so very sad.

Those were 2008 and 2009.

The Christmas' after those were increasingly better but not without problems and fears.

Fast forward to this Christmas - it was a joyous one for our family.

My daughter was so happy - which made us all happy - and she did not engage in eating disorder/restrictive behaviors.

With the weight restoration, right treatment and time, things can and often do get better.

Hang in there!

Hugs!





 

Cathy V.
Southern California
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starvingmarvin
dms -

I found your "all or nothing" statement about your daughter's mindset to be very interesting, we have always described our daughter's thinking as very black or white, with little ability to see any gray.

I have not read any of Aimee Liu's books.  The only one our library system has is "Gaining," I have put a hold on it.  I just finished "How to Disappear Completely" by Kelsey Osgood.  While in need of a good editor, I found the book riveting and gave my copy to the psychiatrist at her PHP/IOP clinic.

SeminarLady -

Our library system does not have Doreen Samelson's book.  Grumble.  Perhaps I will get in touch with her for more therapist recommendations.

I am sorry to hear your daughter spent two holiday seasons in the hospital.  This is our second holiday season spent at home, did not want to eat the costs of a planned vacation last year, and this year the insurance will have a tizzy and threatens to not pay if our daughter is out of care for an extended period of time.


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Colleen

Hey Starvingmarvin,

Welcome from me.

Have you got "Help Your Teenager Beat an Eating Disorder"?  Everyone needs that one!

I'd also recommend (for you, not your d) "Eating with Your Anorexic" by Laura Collins and "Brave Girl Eating" by Harriet Brown.  They are easy-to-read parents' viewpoints of AN.

I also love Carrie Arnold's book "Decoding Anorexia"--it is really up-to-date with all the science and neurology of EDs.  She makes complex science understandable to just about anyone.  You may find her chapters on brain function helpful in understanding what is going on with your d's brain.

It does take a long time at full weight restoration for brain healing.  A year is pretty average, but there are parents here who've had to monitor meals for two or three years before the child is ready to do it on her own.  I don't mean to discourage you, and if you can find a good therapist then more power to you.  But I do want to be realistic with you.  Don't give up--it's definitely a marathon and not a sprint.

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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FHandL
MidWestMom wrote:


You are doing such a great job... Please consider that YOU (and other family members) are the team leaders for your D ... <snip>

You should also be comfortable that the individual therapist is going to 100% support your feeding approach at home... so many of them 'cave' to the ED by giving more choice and independence than is appropriate.   ED LOVES  sympathetic therapists. 


Oh my, does MWMom hit those points right on the head!!!

Yes, yes, yes...ANY time your child is under medical care (for ANY disorder!), you are still the leaders of the medical team. You have to live with the final outcome of the care plan. The doctors and therapists may bring wonderful experience and wisdom for you to consider carefully, but when the sun goes down, YOU are the leaders. No one is invested in your child as fully as you are.

And then I have to absolutely second the comment that ED love sympathetic therapists!!! This is so true...and therefore YOU are the one who needs to pick the therapists on the team, NOT the-ED-that-rules-the-child. We learned this one the hard way, and it created over a year of setbacks that our daughter is now working very hard to unlearn. There is no time to waste in regret, but the moving forward is doubly hard now.

Faith, hope and love abide. 1 Cor. 13:13a 

mom to wonderful daughter, age 19, struggling with RAN since age 14
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starvingmarvin
We met with a new (possible) therapist today, and our D will talk to two more on Monday.

Our PHP/IOP provider organization had set a target "dismissal" date (not graduation date) the first week of January. Her therapist had her sign a contract on Monday that is she supplemented at any meals, she would have to leave the program.  This morning she complained her stomach hurt, I still made her eat breakfast.  We met with her nutritionist before lunch, warned her that D was complaining about her stomach hurting, and D said it was due to an increased anxiety around food that had been going on for weeks.  First we'd heard of it.  After D left we discussed with the nutritionist how the program is not working for her, not laying any blame on either side.

Around 12:30 I received a phone call that she had to suppliment her lunch (left overs from dinner, not challenging food) and I should come and get her, quickly followed by another call that she had thrown up her Ensure (which she has a habit of doing).

Picked her up, gathered her stuff, and are now "programless."  I am glad we began the new therapist search ahead of time.  D feels like a failure, I am being understanding, husband (home for the holidays) is furious, even though her felt the program was not working for her.
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bicycle
Hi-  I am new to the world of EDs but I just wanted to say that it sounds like the treatment failed her. I don't really understand why kids get dismissed from programs if they have problems with eating....that's why they are there.
Wouldn't the treatment team want to try a different approach until they succeed in getting the food in and keeping it in?
14-year-old daughter with restrictive ED including symptoms of exercise compulsion and orthorexia; dx at age 11. Weight loss/illness onset due to underfueling for sports.  Still recovering!
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dms
Hi starvinmarvin, just so you know, we also had the experience of insurance refusing to pay for an outpatient program due to her failure to gain weight in that program, with absolutely no regard for the other factors, including the fact she had her first period in 7 months as a result of the initial weight gains.
It was indeed a terrible program, and to address "bicycle" comment, seems each program has its own approach, and no flexibility in changing their approach, even if it fails a patient. The programs just boot out the patient in one way or another.
 Yes, it is indeed a shock to find out that insurance won't pay for the treatment to help restore eating.. because they aren't eating, even if the program  at least prevented further weight loss. Insurance has gotten ridiculous about paying for eating disorder treatment.
Old enough to be aware of the situation, tragically, our daughter consciously informed us she would lose weight all over again to get insurance to pay for the treatment she knows she needs. She got herself back into the hospital that way. Not our choice of approach, but she is a strong willed 15 year old.
The mental health system in this country has been broken by archaic insurance companies who are more concerned with profit for stockholders than in providing a service, despite the fact they are already profiting by billions of dollars.
We now have a UCLA team behind her and who will fight insurance as needed.
But if that fails, our last resort is an LA attorney named Lisa Kantor who only takes cases where insurance has denied payment for eating disorders.
By the way, does your daughter usually drink milk? Ensure is made with milk solids that don't agree with a lot of people, unless its the bulimia...
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Psycho_Mom
Hi,
Don't know if this will help any, but just so you don't feel alone, our 15 year old daughter has been solidly weight restored for 5 months, and while we see signs of progress in cognitive ability, her conception of herself as "big" (ridiculous) and her idea that many problems will be solved if she could just lose some weight (not happening on my watch), has not really wavered. sigh. I am told by many--and I do believe it, because I do see progress sometimes--that brain healing takes a long time. So we wait for it also.

And I dunno, but your quote:

"She is clinging to the idea that, once she is not constantly observed, she can go back to her old ways..."

sounds to me like a plea for you to constantly observe her.  She's telling you what it will take to prevent her not going back to her old ways. (This is basically the stage we are at here. Our d eats compliantly, but she needs to know we are watching her and making her do it.) Ed communicates strangely. Sometimes I think ed is primarily a disease of communication.

Also, 6-7 grand a MONTH? OMG. I had no idea. You could hire a therapist to come and live with you for that. 

very best wishes, and sorry if my post is abrupt; it's late.

D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Amoma
$7,000 a month x 12 months = $84,000 for institutionalized care ( eg therapeutic boarding school)
paid upfront.
This would simply not have been an option for us
________________________

I know I asked this before, but you are in CA, have you looked into UCSD weeklong family intensive. Gold standard in evidence based treatment.  

There are many mentor parents on here who can offer feedback on UCSD.
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starvingmarvin
So much helpful feedback.

bicycle - I think you are 100% correct.  An eating disorder clinic should be able to handle, oh say eating issues.  She threw up after eating lunch on Monday, there comment to me was, "We've never had anyone throw up at program before."  Perhaps, as an ED clinic, they should have planned for this happening to someone at some point?  Her eating has become more erratic at the clinic (she doesn't microcut her food or throw up meals at home), they saw it as backsliding and felt a get tough approach would work with her. Perhaps less group and art therapy and more "let's sit down and discuss what is going on with you that is coming out at mealtime" would have helped?

dms - insurance, so not my favorite topic. [frown] the companies are in the business of increasing shareholder value, not customer value.

I have heard of Lisa Kantor and been in touch with their office in the past.  If individual therapy does not help, we may need their help to fight for whatever the next step is.

kbs and Amoma - I may be misrepresenting the price for all therapeutic boarding schools, I am sure there are some that are more "reasonably" priced.  Academic boarding schools (9 months a year) run usually $40-50K, throw in 3 extra months for their year round school aspect and the therapeutic/counseling component and I can see the price getting up there. 

My husband and I have joked that for much less money we could pay for 5 days of individual therapy and have someone come to the house, create specialized meals and watch D eat.

kbs - I agree with your comment about her asking to be observed in a round about way. Whenever I get a story from D that, "So and so does/needs this or that," I wonder if she is trying to tell me to be on the lookout for her.

I will start looking into the UCSD weeklong program.  Thanks for everyone who has suggested it.

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Amoma
Perhaps can you elaborate on this : " Her current target range is higher than we think is okay"

so we can help you think things through?
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