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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Sheterp
Hello,
Newbie here! Simply overwhelmed and don’t know what to do. My 14 YO daughter has developed a severe food aversion ED. So new to this I am not even sure of the correct “technical” diagnosis. While this seemed to come on suddenly I now think we just missed the early signs and the gradual increase. Sadly at least up until this week (weigh in on Friday at Pediatrician) she has continued to loose weight for the last 4 weeks...sigh! while she has been compliant as much as possible for meals (maybe smaller than they should be) dinners can suddenly be hell!  Seems like her anxiety reaches maximum capacity by dinner. This incredibly kind, helpful, caring amazing angel suddenly becomes almost demonic. Can this really be her?  She hides her face, becomes visibly agitated and MEAN! As bad as it is and I do mean bad, the next phase actually scares me most. She then feels bad, very apologetic and fiercely angry at herself and can’t calm herself at all!  Is this normal?  

She is currently seeing pedi weekly, ED nutritionist, ED therapist and psychologist (previous relationship as she has been on lexapro for a couple of years for anxiety. We are about 4 weeks in I think. 

Questions:
1. Anyone ever see anything like I describe above? Advice?
2. Talks about Residential Treatment. Freaking me out. Can’t we do this at home if we can start gaining and is medically ok?
3. They upped her lexapro could the demonic behavior be due to that? Should we consider med switch?
4. She hates herself so much right now. Major change in personality. Sometimes more withdrawn. Not very expressive. Not as kind as she is normally. Is this normal?  Would more 1:1 therapy help? How many times/week? Is she still her?? Will normal personality come back?
5. Is the self hate often a “thing” with ED?

Very worried about starting high school in a week. Hoping she can go. I think very traumatic to miss this. 

Any help or useful links, recipes, recommended reading, anything she should read or watch? Desperate for any knowledgeable and experienced support. Although her “team” is great. We are just very limited in the time we spend with them. Sadly not enough time to answer every question and address every obstacle we encounter. 

Btw if any great resource recommendations in the Mass/RI are out here, please do share. 

Feeling temporarily helpless!
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kazi67
Hi Sheterp and welcome to the club no one wishes to ever join
but you will find lots of info get support from parents all over the world 
unfortunately everything you describe is pretty much “normal” with ED
your d story and behaviour all sounds very similar to our d and many others on the forum

At one stage we believed our d had lost her mind  completely and in  effect it seemed we had lost her completely to this illness 

however she is now doing very well and pretty much back to her normal self although we are forever watchful and mindful that without proper nutrition every single day it can come back 

it’s a steep learning curve, read around all the info on the site (I’m not sure how to link it but someone will come along and link videos/books etc 

You are fortunate your d is young and you have more “control” of her and her treatment 

our d developed AN on cusp of adulthood and it’s so much harder, so do what you can now!!
we nearly lost our d also as she became so underweight and medically compromised 
she has spent 2 years in and out of hospital 
sometimes the ED is too strong for us parents to manage ourselves but it is possible but it’s not easy 

its a serious life threatening illness and you need to ensure 3 meals and 3 snacks everyday and making sure they stay in
hopefully your d is not purging if so you will need to supervise her for at least 1 hour after each meal and snack, I had to take a term off work 
high fat and sugars

please also be sure to take care of yourself
(I know this seems impossible) but it’s necessary 
says me who after 3 years of a roller coaster ride am now so sick 7 weeks of a cold turned into a chest infection that I now cannot shake, 
think  my body has finally just given up with all the stress over past years

its a slow process but you can do it!!
your d is still in there and once her brain starts getting the nutrition in you will see her slowly come back 

i wouldn’t be worrying about high school right now
getting your d to eat and getting her weight restored and her “back to her normal state” is the MOST important thing right now 

its the the hardest thing but SO worth it once they get better 
xx
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867_5309
That angel-demon thing is for real!   My kiddo displays that at times, and it’s awful.   The best I can say is that it’s like something else takes over, and then when the moment is over, my child is back.  Glad to know it’s not just us. 
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sk8r31
Welcome to the forum, though sorry you have a need to be here.  Yes, as the others have said, the behavior you are seeing from your child is fairly typical with an ED.  It is heartbreaking and frightening to see our previously sweet, kind kids seem to turn into a different, nasty people at the drop of a hat.  

Some resources that might be helpful are When Your Teen has an Eating Disorder by Lauren Muhlheim and videos and written material by Eva Musby.  
I would not bother giving your kiddo anything to read at this point; it is unlikely at this stage that there will be any insight, and your energies should be focused on nutritional rehabilitation as quickly as is possible.  Individual therapy may be helpful down the road, particularly if there are co-occurring symptoms of anxiety or depression.

Our d had preexisting anxiety, and we did have her see an individual therapist at the same time as we were doing family-based treatment with a trained provider.  This was helpful to give her skills and tools to manage anxiety; she also had meds to help with that.  The individual therapist and FBT-trained therapist coordinated very well, so it felt cohesive and collaborative.  However, she was 17 at the time, so older than your d, and it seemed appropriate given her age as well.  

As has been said above, taking good care of yourself physically and mentally is very important, in order that you can be in the best shape possible to help your d.  Sending warm support.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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deenl
Hi Sheterp and welcome,

I remember all too well the stage you are at. I felt one big mass of fear and confusion, that I was living within a real life nightmare.

Sheterp wrote:
 Seems like her anxiety reaches maximum capacity by dinner. This incredibly kind, helpful, caring amazing angel suddenly becomes almost demonic. Can this really be her?  She hides her face, becomes visibly agitated and MEAN! As bad as it is and I do mean bad, the next phase actually scares me most. She then feels bad, very apologetic and fiercely angry at herself and can’t calm herself at all!  Is this normal?

Unfortunately, this sounds very normal. Emotional meltdowns are almost inevitable, especially in the initial phases of refeeding. I found this video to be an excellent insight into what our kids are going through and how we can help support them.

Sheterp wrote:
1. Anyone ever see anything like I describe above? Advice?

Yes, our son had no discernable pattern but it was as if it all became too much and he would loose it. Unfortunately, this meant sobbing his heart out while trashing his creative projects and self harming. Happily, this passed with nothing more than increased and regular nutrition.

Sheterp wrote:
2. Talks about Residential Treatment. Freaking me out. Can’t we do this at home if we can start gaining and is medically ok?

Contemplating residential treatment feels terrible and the day our son was admitted as an emergency felt like one of the worst of our lives. However, we could not get refeeding started without it. It can be the beginning of getting better. Unfortunately, the path to recovery will be different for each patient as they are all individuals. Perhaps you can see how it goes at home and reassess if there is little or no progress but it does depend on whether she is medically stable or suicidal.

Sheterp wrote:
3. They upped her lexapro could the demonic behavior be due to that? Should we consider med switch?

I have no experience with medications.

Sheterp wrote:
4. She hates herself so much right now. Major change in personality. Sometimes more withdrawn. Not very expressive. Not as kind as she is normally. Is this normal?  Would more 1:1 therapy help? How many times/week? Is she still her?? Will normal personality come back?

My son becam so withdrawn and depressed the psychologist was convinced that he had additional severe psychiatric problems. In our case, feeding him 3 meals and 3 snacks a day for a couple of years has seen him return to his quirky self. The changes are gradual but did start within a couple of months in our case (our son was very severely underweight and had such extreme symptoms that they insisted on an MRI so your path may very well be different) and keep continuing even up to today. There are very prescious moments in your future that you will appreciate all the more for the pain you are all now going through. For me they are things like the first time he smiled again, ach and the moment I heard that first laugh, pure gold, the first touch where he didn't flinch from me, the first weekend away after 2 year fighting this illness and the joy of seeing him cycle off to school again with his two brothers. The chances are in your favour as the younger they get ill, the longer they are in an environment that will ensure they continue to get the nutrition they need for physical and then psychiatric recovery.

Our son has never had therapy. Most parents find that the initial focus must be on providing sufficient nutrition to give all the body's systems including the brain the fuel it needs to function. Just to give a couple of many, many examples; seratonin is produced from the amino acid tryptophen only acquired through protein foods and self harm has been linked to too little glucose in the brain. The majority of people have found that therapy has little chance of working on a malnourished brain. We generally give a guideline of WR (weight restoration), wait 6 months to give the brain a chance to heal and then assess what additional supports are needed. The difficulty is of course that we are all individuals and what works generally may not be the right course for your daughter. Parents know their own child best and combined with knowledge from a professional team or acquired themselves from reliable sources can guide the personalisation of treatment. Personally, I don't think it is possible to avoid some trial and error. We even have a supportive saying to cover it "Feedback, not failure

Sheterp wrote:
5. Is the self hate often a “thing” with ED?

Absolutely. It often but not always fades with WR

Sheterp wrote:
Very worried about starting high school in a week. Hoping she can go. I think very traumatic to miss this. 

My son missed two full years of school (remember, extreme case) and has just started his third year back at school. He will be graduating this year still on time so the academics were not an issue. He has always been pretty introverted but has had few social issues since his return, his mentor reckons he is better than before he got sick. Our kids have a severe and sometimes life threatening illness. All children with serious illness miss some life events or spend them in hospital. When the situation is fresh and emotional, this feels just awful. With some time, we do come to accept that their health has to come first. Still sucks though.

Sheterp wrote:
Any help or useful links, recipes, recommended reading, anything she should read or watch? Desperate for any knowledgeable and experienced support. Although her “team” is great. We are just very limited in the time we spend with them. Sadly not enough time to answer every question and address every obstacle we encounter. 

SHE should not read or watch anything but YOU and any other carers should learn as much as you can. You can read around the forum here, use the search button for specific topics. You can find additional information at our FEAST website resources here. If you were to read only one book, the one I would recommend is When Your Teen has an Eating Disorder by Lauren Muhlheim. A more detailed book if your quest for knowledge is not satisfied is Anorexia and Other Eating Disorders by Eva Musby. I read a lot so come back if you want more recommendations!

Sheterp wrote:
Btw if any great resource recommendations in the Mass/RI are out here, please do share. 

You could check out our Review of Treatment Providers here

Sheterp wrote:
Feeling temporarily helpless!

We have all been there. We understand. Please browse the forum and feel free to ask any and all questions that you have. I have found knowledge to be absolutely empowering throughout the whole journey.

Wishing you strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Sheterp
Hello kazi67, 867_5309, sk8r31, deenl,

Thank you all for your thoughtful, candid and sharing responses. 

I so appreciated the perspective shared: "There are very prescious moments in your future that you will appreciate all the more for the pain you are all now going through. For me they are things like the first time he smiled again, ach and the moment I heard that first laugh, the first touch where he didn't flinch from me, the first weekend away after 2 year fighting this illness and the joy of seeing him cycle off to school again with his two brothers"

While this seems so far out of reach and sadly impossible to imagine, I love the reminder to appreciate and devour every positive moment and tinniest of wins. You all brought me a true sense of hope.

Thank you so much for reference link, book and video info. So much info it is very hard to know where to start (I actually joined days ago and was so overwhelmed I just gave up.

Sadly, I fear one of the final straws that contributed to this kicking into full gear was learning back in April that her dad (my H) was diagnosed with early onset Parkinson's.  We have known for a while but was not ready to burden the kids with the diagnosis but it became time to explain some things. We consulted with several therapists prior to sharing and tried to handle as best we could but no matter how you present horrible news it is still devastating to hear. We are currently planning to electively have DBS (deep brain stimulation surgery) end of Sept. Now the question is, do we consider waiting?  Which has both very strong Pros and Cons. On one hand it could help his symptoms which could east stress and anxiety in the home. Or the surgery could increase anxiety and make things worse. However, if we post pone and we make some progress will surgery then set us back later and again.  So much to consider.  

I look forward to a time when I can contribute and help others in the way all of you are. 

Wow...clearly it is true, what doesn't kill you, makes you stronger. Maybe when this gets more under control I will change my user name to "popeye"

I have never lived so much for minute to minute in my life. 



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deenl
Hi again,

If you are feeling overwhelmed, I would recommend looking at the video and reading Lauren Muhlheim's book. You will get all the essentials in an easy to digest manner. Then you can ask any questions that come up.

I am so sorry to hear about your husband's health. It really makes a difficult situation very complex and my heart goes out to you. The fact is that eating disorders are triggered by negative energy balance (an imbalance between the calories consumed and the energy spent) in people who are genetically susceptable - the reason why you eat less than your body requires varies; a desire to eat healthier, an extra sport, braces, growth spurts, an illness and I am sure that hearing that your dad was ill would depress anyone's appetite. You did not do anything wrong, as you say sometimes life sucks and all we can do is be kind, caring and supportive to our kids and help them through the tough times a well as possible. There is no way of knowing ahead of time who will be vulnerable to an ED and there is debate about whether it is actually possible to prevent them.

I am copying a previous post I wrote about dealing with your other kids so you have it handy. This was also coincidently written to a family where the dad had cancer, hence, the reference to it being raw.

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Our youngest was also 9 when his brother got so ill. We used a lot of imagery to help him understand and to make it less daunting.
  • His favourite one was Gremlins. We explained that there was a gremlin in the works. It used his brother's voice and face to work it's mischief. Underneath his brother didn't want to be acting so mean but the gremlin took over sometimes. It got to the stage where he would come over to me and whisper 'That was the Gremlin, wasn't it?' 'Sure was. Well spotted. You know X wouldn't be that nasty.' We talked about how in the movie the Gremlin came because he was fed after midnight. Well the gremlin in our house came because there was not enough food so we are going to use lots of food to get rid of him.
  • We also used Star Wars. How the Jedi have dark and light sides. His bro had temporarily gone over to the dark side. But instead of lightsabers, I had a wooden spoon. We would make us funny stories about fighting the dark side with chocolate sauce and ice cream.
  • I have also heard of people using Harry Potter imagery. The imperio spell is one of the Unforgiveable Spells and allows the person casting the spell to control another person's actions. And, of course, the Dementors symbolise depression, sucking all the light and happiness out of someone.
I used to lie on his bed at night and we would chit chat about this sort of stuff, getting in lots of goofiness and laughs too. But also about things going on in his life too. He was terribly unhappy at school but I had no emotional or mental energy to deal with it so he had to just go. I feel bad for him but luckily there has been no lasting damage. 

We also had plans of action for when the ED son lost the plot and was screaming, violent, self harming or sobbing. He would find his oldest brother and they would snuggle somewhere with the iPads and headphones on and dad and I would pop in and out as we could depending on how ED bro was. I was careful to explicitly tell them that this was normal and temporary. I used the imagery of people undergoing cancer treatment feeling worse in the moment but it being for the long term good but maybe that is too raw for you guys. Or maybe it could help to explain that dad's treatment was tough and everyone rallied around and like dad, his sister will get well again. You know what will work best in your family.


and another summary

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My son was 12 when he got ill, his brother was 14 and his other brother was 9. In spite of the older one hearing our ED son's suicidal plans and the horrors of refeeding, they are both happy and well and have not needed any therapy.

I am just going to say some of the things we did, not that you have to copy them, but to inspire you to think of ideas and tweaks that may work in your home.

  • We always knew that ED was an illness. No one is to blame for getting an illness and it is totally normal for the family to rally around and support the person who is ill. We emphasisied that we would do all this for any of the family who got a terrible illness.
  • We talked openly about the elephant in the room but at an age appropriate level. There is nothing scarier for kids than a feeling of tension and not understanding. We had no choice anyway as ED son expressed his suidal plans in front of oldest and youngest overhead discussions.
  • This also helped to convey the idea that the hell we were in was temporary. It may go on for a long time but it will get better.
  • Our 2 other boys wanted nothing more than to help their ill brother. They didn't have the life experience to know what to do. So we guided them in exactly how to help. Mostly we told them to just be his brother. The eldest one got a new computer game and just chatted to ED son about it even though he didn't respond initially. Eventually, he started engaging in the conversation, watching older son play, began playing himself, began playing on-line, began actually talking to people on-line. I love that computer game. [biggrin] Younger son is more cuddly and would just sit right down beside ED son on the sofa and helped ED son to get used to being touched with affection again.
  • We emphasised that they were not to engage with any talk or put any pressure on ED son around food. That is the job of the adults.
  • They were free to tell us anything they wanted, even feelings they felt guilty about. Everything they felt was a NORMAL reaction to a really, really difficult situation. They were not responsible for catching any ED or self harm behaviour but if they noticed they could and should tell us. It was not ratting, it was necessary info to help us to help ED son.
  • We had a plan in advance for when the $#! hit the fan. This often happened in the evening or at night. Youngest would crawl into oldest bed and both would put on their headphones. Hubby and I would take turns to go into them every so often to tell them what was going on and to guide them in feeling sympathetic to their brother for having such an awful illness and having a tough time. If it was daytime, they would disappear upstairs with their iPads and headphones. They knew that if I was alone, I could not leave ED son so could not update them as much. But I always did so as soon as the incident was over.
  • We were in emotional chaos, for months we had no clear path to help our son (poor professional care) but all our kids knew that we were not going to give up, we were not going to let him die and we were going to find something that worked. These were 100% truths and the kids knew that deep down in their hearts and souls. However, during the period where we were figuring the details out Mom and Dad desperately practiced 'Fake it until you make it'. And also an acknowledgement that there was no prescription so we needed some trial and error.
  • We used many stories to help, especially the youngest. His favourite was that ED was a Gremlin in the brain. He liked that because it helped explain crazy, out of control behaviour that used his brother's voice and his brother's face. Sometimes when ED son was mean to him he would whisper to me that he knew it was just the Gremlin. We also used a Star Wars analogy that Darth Vader had the good and dark side within him, as we all do but when ED showed it's face the dark side had taken over. We were the Jedi and we would squash the dark side. We also used Harry Potter stories, especially the Dementors and Boggarts and would think up spells. Edit: and of course eating chocolate to feel better after a run in with the Dementors always seemed like a good idea to us.[wink]
  • We did not eat as a family. One parent stayed with ED son in the living room where he ate. The other ate with the other two kids.

Hope you can find some hope and ideas for the little ones. People all react differently but on the whole kids are pretty resiliant.


Please remember that these are just ideas that worked for us, they may not work for your family. One of the core principles in family-led treatment of eating disorders is that the parents know their kids, their own style of parenting, their own strengths and weaknesses and their own situation best. They can use these to find the best way to support their child to eat better.


Can you guess that the way we helped our kids is one of the areas I think we handled really well? I'm proud of us.

I don't often focus on the most difficult aspect of the illness but given that you have to make a decision about your husband's treatment, I feel like it could be useful information for you all. The timeline of the illness is generally much longer than most people expect, including many professional teams. I have been a part of this forum for many years and rough estimates would be as follows: Time to get a mealtime routine set - about 6 weeks. Time to weight restoration - 2 months is excellent, a good few more not uncommon. Time for brain healing - roughly 6 months after WR. Few are quicker than these estimates and many take longer. Certaintly during the first few months every meal needs to be supervised and many kids become painfully slow eaters. All in all you will probably be guiding your daughters eating for about 2-3 years, although it really does get easier and less time consuming after the first few months. Of course, a firm but affectionate grandparent, aunt, uncle, friend sent by the angels can be trained to supervise meals to ease the pressure on you guys. As I say, I hope I'm not upsetting you but forewarned is forearmed.

I often found that when I had difficult decisions to make (none as difficult as your husband's treatment though) taking some time and allowing it to mull away in the back of my mind helped to bring an instinctive answer to light. Hopefully whichever decision you take, you and your husband will be on the same page. 

Given your challenges, I hope that you can rally the troops. Any friends or family good cooks who can stock your freezer every couple of weeks? Steer them towards our high calorie meals thread and high calorie snacks. I always aimed to get the most nutrition into every bite so he did not have to eat mountains of food. Normal food recommendations are for people with normal nutritional needs - our kids have much higher requirements.

Can friends do the school run or take the kids after school sometimes? Grandparents who can take the other kids to the cinema for some time away for the difficulties of the current time? Someone to cut the grass? You get my drift. You and your husband really need to focus all your energy on the health issues, family and self-care at the moment.

I used to hate when people told me to put on my own safety mask as without it I would be of no use to anyone. What? When my kid is so sick? It's in my mind non stop anyway? But, of course, they were right and any little thing you can do to survive, please do. I had a massage chair for the rocks where my back muscles used to be, my mum sent the psychologically essential Irish teabags by the 100's (and was always at the end of the phone to share tears, frustrations and eventually the little joys) and I used to soak in the bath until I got the shivers. I also went to my doctor and got some medication to help with my own anxiety. I only needed it in the worst of times but in those times it was a lifesaver.

Oh dear, I've given you another tome to read but hopefully it is more of a summary of essential info to save you searching around.

You obviously have loads of strength and courage but I'm sending a bit more your way, you can never have too much,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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BebraveMummy
Hello. Just adding a comment on school. In our case school was a great motivater. My 11 year old loved school and was very motivated to get to school so it was a valuable incentive to get her to eat initially or later drink, when she was reliant on suppliments drink or she was kept home from school. I would not take her until all nutrition required was consumed. Tried to explain that it wasnt punishment but was safety.  She hated me for it, got violent etc but ate/drank eventually to get to school on time.She is a gorgeous loving kid but was turned cruel and violent, miserable and depressed by the illness. Over school hols she deteriorated and was hospitalised for 9 weeks.  Luckily once home stable enough medically her school provided a teachers aide to sit with her at recess and lunch, she had to eat/drink or I would be called to take her home. She always conformed at school and found it an easier place to follow the eating rules. 
Its 6 months now since discharged from hospital, she ate almost no food in hospital but drank required suppliments. Gradually changed to eating solid food at her own pace. Has not missed a day at school once out of hospital as its a safe place for her with strong support and routine. Ate quickly so could go play with ftiends.Distracted from the horrors of her illness. She still sits with staff member to observe eating. She has had no psycology therapy as initially she wouldn't engage and then had massive meltdowns that couldn't be managed when meeting with therapist. Her behaviour is now much improved. Much nicer/kinder/happier more enthusiastic. Very rarely negative and extremely rarely talks of hating herself or wanting to harm any more. This has occurred with food not any therapy. Back to being cuddly and loving, such a joy as the rejection/violence and hate from her was so horrible. Wishing you all the best. 
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workingthrough
So many amazing parents here - so much good advice ^^! We’re still making our way out but just wanted to say that we’ve found all of the above posts to be so, so true. 

Don’t give up hope, try to take care of yourself, spouse, and other kids as well - it will get better. She sounds completely typical, she’s still very sick. As she eats and gains, you’ll see her coming back. Like pp, it was a small smile, a giggle, talking to a sibling, a laugh, showing interest in things like before - they slowly come back. We’re at ~a year and things are so much better. Still very different in that we need to plate, watch, etc. but we do feel like we can see our s again. 

Keep holding strong. She needs you. She’s lucky to have you. 
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mjkz
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Now the question is, do we consider waiting?  Which has both very strong Pros and Cons. On one hand it could help his symptoms which could east stress and anxiety in the home. Or the surgery could increase anxiety and make things worse. However, if we post pone and we make some progress will surgery then set us back later and again.  So much to consider.  


To me this would hinge on how bad his symptoms are.  I have a good friend who had DBS and I can tell you it is not a magic bullet.  He got it two years ago because his meds just weren't enough anymore.  He had to have 24/7 care and he would freeze in place at times or have chorea. It was bad enough he didn't leave the house.  It does not work immediately and it takes a lot of fine tuning.  One thing that makes it worse is stress so if your hubby can still get by on meds, I'd leave it until you are over refeeding.  My friend had no choice.  His meds just weren't cutting it anymore and they were so high that he never knew what he was going to get.  Just my opinion though and it's worth all that you paid for it 😇
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