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ACL

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Reply with quote  #1 
Looking for advice on Seattle area providers.
Our 12 year old daughter was diagnosed R AN 11/2017.
We attempted to treat outpatient initially and had some success increasing her intake but the combination of extreme anxiety and hypermetabolism was more than We could manage successfully and she was admitted to Seattle Children's in August .
We are currently in Portland at Kartini as the treating team at Children's strongly recommended residential and we knew we needed more support than we had outpatient- but felt our kid should be with her family, treated by folks who work with lots of kids not primarily older teens, treated by a team which views anorexia more biologically, etc
D is eating everything on her meal plan ( a lot, she's got lots of snacks, benecalorie), gaining well, the dysfunctional/ ocd eating behaviours SO much better.
We actually had good fbt therapy in Seattle, just unfortunately D didn't get diagnosed until after restricting had her going on several months and then we got some initial not helpful advice from dietician, it took a while to find and get started with a fb t therapist and by that time she was pretty dug in...
Anyway, what we do need is advice on a pediatrician and, I think, a dietician. The latter not because I don't know what she needs but because none of us, including AN D want to be stuck on meal plan forever but it is serving a role. Actually a couple: 1.it's not just mom and dad saying you need this much food, it's your doctor, it's all written down on this paper (along with the credible threat of a tube if She doesn't eat all of it) 2. Anxiety reduction: she knows we're not putting 8 sticks of butter in her mashed potatoes and won't make her eat ice cream 3. It allows for some choice. So, much as we all sometimes would like just tossing it by the wayside as soon as we leave Portland doesn't seem wise.
Mamaroo

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Reply with quote  #2 
Welcome ACL and sorry you need to find yourself here.

I don't know of any providers in Seattle, unfortunately. I see you are nearly one year into this journey, it must have been very tough.

It's wonderful that your d is eating everything on her mealplan and gaining, you've done a great job!

If I understand your post correctly, your d is currently inpatient at Kartini (which is far from home) and you would like upon discharge to get her treated closer to home. Is that right?

Could you go back to your fbt therapist in Seattle? It might work better now that your d's weight and mental state are better.

My d was also stuck on her mealplan (6 ensures day), but our treatment team left it like that for a couple of months and gradually added to it and then later replaced the ensures with food. It does make it easier if you have a team who tells her this is her mealplan, however after a while our treatment team handed control over to me (not her) to adjust her mealplan as I see fit and to add variety.

We also followed Kartini's treatment philosophy of not giving hyper palatable food for the first year. She was WR before she had her first ice cream in a long time. We gradually added sweets and chips, telling her just to taste and to only eat as much as she could handle.

Although she is a lot better now, she still eats 6 times a day. She is able to choose her own snacks now, but I still plate her main meals (as I do for the rest of the family).

I would recommend to stay on the meal plan provided by Kartini until she is back to her historical weight curve plus an additional 6 months to allow for brain healing (increasing the amount to keep her gaining, of course). Include more variety and fear food as you see fit. You will see a change 6 -12 months after WR and then it would be easier to be more flexible with the mealplan and to challenge fear foods head on.

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Mamaroo

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Reply with quote  #3 
I forgot to say, this is a public forum and your d might find this thread here, consider changing your signature st the bottom.
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Foodsupport_AUS

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Reply with quote  #4 
Welcome to the forum.  Hopefully some of our Seattle members will drop by soon with some suggestions for providers closer to home.

  It sounds like your D is doing well at Kartini but as Mamaroo has said you want to move care closer to home? I would suggest not even going with  a dietitian. You clearly  have a good meal plan at the moment and  realistically a dietitian is unlikely to change it for the better. The question for you is whether you want to go off a plan and do your own thing as would typically be done in FBT.  

We did re-feed on a meal plan. My D was very ill and in and out of hospital. It was a lot easier to just keep on going with a plan that was working than to try to change it, particularly when D was prone to stop eating altogether if challenged too much.  We don't do a meal plan at all now, our meals are as flexible as ever, it just slowly changed and eased back. For me the advantage of a meal plan was that I really didn't have to think about things too much, this is mentally exhausting as it is, all I had to do was put the food on the table with in the plan. For us we had a range of dinners, lunches, breakfasts and snacks,  pick one, vary it no more thinking needed. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
sk8r31

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Reply with quote  #5 
Hi ACL,

Welcome to the forum, though sorry for your need to be here.  I live 90 min north of Seattle, but we had to travel to the Seattle area for good evidence-based treatment.  Our family is several years out from our treatment, but I have kept somewhat up-to-date with treatment providers through doing support work with Seattle area parents.

Kartini is a great treatment option, and it's good that your d and family have benefited from it.  I can understand wanting to be closer to home though, as your d's residential stay is finishing up.

As has been suggested, I don't think you have need of a dietitian at this stage, and it is not easy to find one who won't undermine you.  Sticking with the Kartini meal plan at present, and finding a good treatment provider to help with the medical checks, along with the good fbt T you started with, sounds like a great plan.

At Seattle Children's, I can recommend a couple of providers that we had direct connection with, but I am sure there are others who would also be good.  
Sara Handschin is a PA, but well-versed with the Adolescent ED population.  We were very impressed with her, and she was a very collaborative partner with us.
  
I can also personally recommend Dr. Yolanda Evans.  She may be working mainly in Adolescent Medicine at the South Clinic in Federal Way.  She was also a very sensitive and collaborative provider.

I am happy to either email or chat with you further if you wish.  Currently, our feast-ed.org email system is down for a day or two, but I can be reached at daryl@feast-ed.org if you'd like once the email server is functioning again.

Warmly,
sk8r31

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

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Reply with quote  #6 
Hi All

Thank you for your thoughts. 

D was inpatient at Seattle Children's for 2 weeks. 

We have been at Kartini 4 weeks in the PHP program- she is there 8:30-3 M-F (breakfast, lunch, snack) , we do dinner and 2 snacks on weekdays and all meals on weekends at "home" (Ronald McDonald House). 

All 4 of us (me, dad, AN D and 8 year old little sister) are here. 

Wt gain has been 2+ lbs per week. We won't leave here until she is weight restored (probably another 6 weeks or so, depending on rate of weight gain). They set good high wt goal based on historical growth curves so I do think she will be truly weight restored at discharge. 

I appreciate hearing from people who used a meal plan but didn't get stuck on it long term.  Clearly the most important thing right now is she is eating and gaining! I guess I am trying to figure out the balance of how much to tackle all the ED behaviors and rigidity now vs how much to leave little things lie and see how much they fade with wt gain and time on their own...

I think the main recommendation we need is for a good pediatrician or family practice doctor who is well versed in eating disorders. I think after discharge we will still be doing periodic check ins with kartini/ doctor here will be available to help guide care but we can't be driving all the way to Portland as often as she will need medical monitoring. If anyone has worked with a nutritionist/RD in Seattle who they loved, I would also be interested but it may well be that the right answer is stick with the current meal plan for several months/until it is clear that rigidity is down and then slowly increase variety, etc. 




Mamaroo

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Reply with quote  #7 
Quote:
Originally Posted by ACL
I would also be interested but it may well be that the right answer is stick with the current meal plan for several months/until it is clear that rigidity is down and then slowly increase variety, etc. 


We still do 3 meals and 3 snacks a day. After discharge from outpatient treatment, she went to a dr, who is familiar with ED, only once. I don't know her weight, but know she is growing and whenever she's stressed I know to add more.

We started to tackle the rigidity at about 95% WR, but it only became easier at WR. She was able to eat freely and without fear at WR+ 6 months. A lot of her previous anxieties also started to disappear at that stage.

But this is a long process and I still plate all her meals and she can choose her snacks, which I buy (high calorie stuff).

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
wolfmama

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Reply with quote  #8 
Hi ACL,

So glad you posted. I am very happy to hear your daughter is gaining weight (yay!) and that Kartini has been helpful in restoring her health.  It makes sense that you are trying to put together the best team possible when you return to Seattle.    We live in Seattle too (though spending this year abroad).  Though I do not have a pediatrician or nutritionist I'd recommend, we worked with an FBT therapist at Evidenced Based Treatment Centers of Seattle.  It might be worth a call to see if they have anyone they'd recommend.  Here is their contact information: 

Address1200 5th Ave #800, Seattle, WA 98101
 
 Phone(206) 374-0109

I attended a Seattle Area support group for caregivers for a few years and found it helpful. Happy to put you in touch with someone in the group if you would like.  

My friend shared this Winston Churchill quote with me the other day and it makes me smile and gives me hope: "If you are going through Hell, keep going!"  

Thinking of you!




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wolfmama
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