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

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Faddywrite
Hi, I first joined this forum back in February when we discovered my daughter had lost 8kg fairly rapidly and that her healthy eating and vegetarian interests were actually developing into an utter terror of eating sugary and fatty foods. I tried to manage the situation at home for a couple of months, as i had no understanding of eating disorders but by Easter my daughter was really restricting, looked very thin in her swimming costume, was doing press ups all the time and I realised I needed help.

We went to the GP who referred to Camhs and the following week we went for an assessment. Within ten minutes, having just read the initial questionnaires, the ed nurse specialist told us they thought she may be autistic. She then said because of this there was no mental health issue and that she was referring us to the paediatric team to look into asd. However, she also said they nearly hospitalised my daughter as her bmi was so low. They decided not to due to possible autism. We were sent away to wait with no support.

At first we were relieved it wasn't anorexia and the Camhs dietitian said we may find my daughter would now start to eat better. My daughter had told them that he restriction and exercising was being driven by utter fear of becoming obsese and getting diabetes, heart attack etc. The Camhs nurse said this was due to her rigid and literal thinking, that she had taken health advice she had seen on tv and in the news very literally. I do see now that they may have been right. However, the paeditrician said while my d does have a few asd traits she may not get a diagnosis. She sent questionnaires to school and we are still waiting to hear about the team discusssion, as they may or may not send her for more indepth tests.

In the meantime, the doctor said return to Camhs if we were still worried about weight. My daughter began to try really hard to gain weight and now has regained just over 3kg.back then in July she had onlt gained 1.5 kg. She was and is still underweight, she is still scared of eating sugar and fat. She will allow herself some plain biscuits as long as her sugar falls below the nhs recommended grams per day. The same with saturated fat. She wants to weigh all veggies to make sure she is getting a full portion and panics if I add something like a teaspoon of honey to a meal. She has to do exactly an hour or more of walking or exercise a day plus toning two or three times a week. Even if I add flour I get questioned. Over the last two weeks, she has started to stand up after tea, saying it's because she has sat down for a while and the NHs website says you must stand up and move often. It seems like a complusive need to move to me. 
We tried to see Camhs agin over the summer but they closed the referral withpout saying why. I found out and got upset so they did a reassessment with the ed team. This time the assessor did say it's disordered eating of a kind but not a diagnosable ed like anorexia, so sent us to an anxiety counsellor to try and treat my daughter's fears. In the first session the lady counsellor told my daughter her healthy eating diet was good and healthy and that lots of walking etc is also very healthy. She had no idea about eds!! I rang the assessor back and said I'd had enough I was complaining and going private, but he told me to hold on as he had a team meeting that day. Later that day he said my daughter has been given a key worker from the ed team as they do now feel she could benefit from their services. It's only taken 8 flippin months!!!!

I do realise that if she has asd it can be harder to treat an ed as half of this issue seems to be down to literal thinking but I know deep down it is more than this. She knows she needs to gain, but she is always smoothing her hands over self and is scared of looking any bigger, panics if her jeans feel tight. She tries to wobble the skin under her arms. I just hope this key worker gets in touch soon and helps us. 
Sorry for the long post.
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Foodsupport_AUS
So sorry that you are finding it so hard to get help. Your D sounds very ill with as you say lots of rigid thinking. I have no idea how they thought they had distinguished between ASD and AN with the assessment that you have had, particularly since when malnutrition is at play many of our children display ASD like symptoms. My D had symptoms very like those you mention but has AN and not ASD. 

If at all possible try not to get into an argument with the "healthy eating" thing. Prescriptive eating guidelines frequently do a lot more harm than good and your D is a good example of this. If at all possible I would steer her away from this and let her know that this is not healthy for her at the moment. Hoping you get some on the ground help soon. 



D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
"Within ten minutes, having just read the initial questionnaires, the ed nurse specialist told us they thought she may be autistic. She then said because of this there was no mental health issue and that she was referring us to the paediatric team to look into asd. However, she also said they nearly hospitalised my daughter as her bmi was so low. They decided not to due to possible autism. We were sent away to wait with no support."

I cannot believe that. How can they say it is autism within 10 minutes? That sounds not very professional. Knowing that underweight people with a starving brain show symptoms that are similiar to autism (read "Minnesota Starvation Project") I would think it is nearly impossible to diagnose autism while they are underweight.

I can only tell you that ALL you describe was totally normal ED behaviour of my d in her dark days and yes, most ED behaviour is similiar to autism.
I do not remember how old your d is but did you ever see autistic behaviour in her early child days? I have a friend whos son is autistic and you could see it and know it at age 1-2.

Many ED patients have a special genetic character that is a bit like autism and a bit like OCD. They are highly intelligent. They tend to do everything perfect. They like rules and do the same things again and again. They do not like changes. They love symmetrie and order. They love harmony and do not like disputs. This character encreases the risk for AN about 35 times. I would suggest you read "Decoding Anorexia" by Carrie Arnold. I found my d match 100% to what she described. And we need to fight Anorexia here and not autism.

Just an idea:
Even if she has autism it is not healthy for her to stay underweight. Can you think about doing FBT at home (if needed without the support of camhs) just to refeed her first to make it easier to help her no matter what the diagnose is in the end?

Tina72
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
Another idea reading your post: can you block that f... NHS website?
And please check wether she is reading/posting on those pro ana websites...

And I would think about calling Eva Musby. This Camhs seems to know not much about EDs. It seems a bit to me like there is a patient with a heart attack showing ALL symptoms for that and they send him to the orthodontist to see if his teeth are o.k....just my opinion.
Keep feeding. There is light at the end of the tunnel.
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Enn

Faddywrite,
You are a very smart mom. You know she needs to eat more, no matter what the diagnosis is. So how do we help you get more food/calories in and more weight on?

What is she eating now? There are so many voices here that can support you with any flack you get from pushing food. There are many different ways/algorithms.
So let us know what is going on now? She is only 14, right? She should not be making decisions about her food, not when she is unwell.

We all want to help. Please ask all the questions you have!
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Faddywrite
Hi,
I appreciate your support and the suSpport others have given. 
Yes, my daughter is 14, nearly 15 now. Since Feb she has been restricting sugar and saturated fats. But she eats three good meals (as long as they are balanced and include plenty of veg!) and she know she has to gain weight, so eats regular snacks like nuts, fruit and nut bars, cereal and wholemeal bread. So she hasd gained 3.5kg, but is still underweight, just not dangerously so,her weight is 43.6kg and her height 161 ish cm, probably a tad more now. Her periods stopped for about 5-6 months and her hair was falling out but now it's not and she has regular periods for two months. I am so glad baout that. 

The problem now is I was advised not to force her to eat food with lots of sugar or sat fats in, as she is super anxious about going over the level of recommended grams of sugar and sat fats. But to me she is still massively scared of enjoying a bit of cake or puddings apart from low sugar yoghurts and fruit and nut bars. She might allow herself one Costa gingerbread latte a week but sees that as a major treat. She is pescatarian so I cook lots of fish, veggie meals with lots of protein and carbs and healthy fats. She also wants us to weight every vegetable to make sure there's the right amount. I feel weight gain will be very slow if she won't eat puddings, even rice pudding, no ice cream, no cake, the odd biscuit f it fits in to her eating plan for the day. She was even refusing low sugar baked beans but will eat them now if she has them just occasionally.
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Enn

Sorry if I missed something, but who is telling you not to give her sugars and saturated fats? You are not supposed to get more into her to gain weight? I am sorry if I misunderstand, and I still think you need to do it anyway. If you don't go above the "grams" she will not gain as how would you be able to increase the calories?

I know you say SHE is not going to eat it, I wonder  if it is her  diagnosis, whatever it may be, that is stopping her. 14/15 yo should not be caring about "healthy foods". She needs calories, and fats and sugars to grow.
I am questioning the professional advice you have been given.
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Faddywrite
Thanks very much. I feel like I have failed by not making her eat sugary things. I wish Camhs would have offered us support earlier but hopefully the new keyworker will call soon. I was sort of relying on them to point us in the right direction but because she has gained some weight, the assessor said its a matter of treating the anxiety at the root of her restriction. I feel like chatting on this forum has mafe me feel more confident that I need to help my Daughter by reintroducing foods she is scared of. But what if she completely refuses? Its not like shes losing weight now but on holiday she would only drink water or sugar free drinks and no sweet treats apart from one small ice cream which was a big deal for her. Plus she still has compulsions to be active and not sit for long.
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Enn
You have not failed! Please don’t think that. You are searching for info and answers and something that makes sense. The primary issue, as I see it, is that she needs full nutrition AND you need to take over ASAP. She needs that,her ED or whatever the diagnosis, needs you to do it but will protest.
It takes some time to get your game on and by that I mean it takes a different style of parenting where you are looking at the future goals of weight gain and that you need to be a rock now to get to the goal. It is hard. ED will test you every minute to see if you can do it. With the support here you will  and can do it.
My d stood all the time, would not sit. It had to stop and this is part of ED. Many here found no professional help better than what help they got.
How can we help you get the confidence and strategies to help you to help/feed d?
You likely will have to fight her on what she needs to eat.
I hope that helps. This ED business is not straightforward. There is no good source or guidelines for us as parents like for heart attacks or diabetes or other illnesses.
So keep asking and tell us what you need.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn

Oh just a word of caution, when they say that they need to work on the cause of the anxiety first.... DON'T listen. The food comes first, second and third and fourth etc... 

Many of us have seen that when the weight goes on, the exposure to food over and over again, over time, the anxieties do get a lot better and if needed then you can figure out meds, therapy etc...
Right now her brain is not well, (malnourished) meds may not work and no point in "talk" therapy- just my opinion.
I know others will be here to give you more support, and strategies.
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Nicstar4
Never feel guilty, you are doing your best. All your descriptions sound like many with AN. I also thought I could go and find help and be guided what to do.We tried the manage anxiety first and lost weight, and AN gripped harder! Things only started shifting when I sent emails and requests for food plan and had to direct myself. The health services then supported so d could hear what needed to happen from them. Food first. I Find the constant negotiating and the distress getting the food in causes my d, hard to manage
Having said that we have started meds for anxiety which seems to be helping, but the food intake is the main focus.
I hope you find the support from health services soon.
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ValentinaGermania
You did nothing wrong but the advice the professionals gave you was wrong. Not the first time we experience that...;(

Your gut feeling is very good. Your d needs to learn to eat sugar and fat again. That is very important, because she damages her brain with that diet and the result are all these AN thoughts about "healthy eating", "too much fats" and "weighing everything". That is not normal and really not normal for a 14 year old! She should be outside with her friends and thinking about clothes and boys but not about the amount of vegetable on a scale.

Stop weighing all these vegetables. That is no normal behaviour. You seem to be a very smart mom and I am SURE you KNOW what she would need to eat. You fed her her whole life up to now with great progress. Serve her just what you think a normal 14 year old would need to eat and add fat and sugar to her diet again.

The brain runs on fat and glucose. All biochemical processes there need fat and sugar. 80% of the brain is fat. So if she eats not enough fat the brain shrinks like with an altzheimer patient. They saw that on several CT scans of AN patients.
Fat and glucose is something the body cannot produce, so she NEEDS TO EAT it.

For first aid I would try to get her out of the kitchen or cook when she is in school or sleeping. Then increase the amount of fat and sugar that she is eating by sneeking in fats and sugar to her normal food. She will not restrict what she does not know.
For example you can fry everything. You can add canola oil/rapeseed oil to yoghurt, to smoothies, to rice. You can add sugar to carrots and salad sauces.

Stop buying low sugar and low fat products. You pay for that, you set the roules. It is not healthy for kids to eat that and you would not pay for her consuming tabak.

Don´t be afraid of that she might refuse reintroducing fear food. It is normal that she tries to refuse it. You start with ONE fear food (make a list) and a SMALL amount (maybe a teaspoon of pudding). Then you increase that. You think about incentives BEFORE you start that. Have a plan. Think about an incentive if she does eat it. Maybe a lipstick she is fond of or something like that. Incentives work better than punishment. You need to try what works with her. There is no RIGHT way.
My d was older than yours when we started refeeding (17) and I got her with driving licence hours for fear food. Some here spend a lot of money for pokemon cards or computer games. No matter what works, the importance is THAT it works. You need to reintroduce all this fear food again. No way not to do it.

Come here to ask and to vent, we have all been in your shoes. We can help you.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Faddywrite
Hi Tina thanks for the advice. I wonder if I am stressing too much as my daughters bmi is around 17 so not too low. Today she ate a chocolate brownie when we met with my family and although she only allowed herself to drink water witb it she really really enjoyed it. She did look at it on her plate v anxiously for a while and aftef she ate it asked if we could do a short dog walk later but I praised her privately for allowing herdelf to eat it. I said later that she only really needs to allow herself some more puddings etc to gain weight but she said no that eating a brownie is a once a month thing for her. She had to fill in a food diary for camhs tbis week and although it looks healthy there is still no puddings except youghurts fruit and sometimes a few biscuits.
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Faddywrite
Thankyou for your help. If my daughters bmi is around 17 is she still so underweight that it affects her thinking etc? She allowed herself a chocolate brownie today for the first time in a few months. She did sit staring at it anxiously for a while but ate it and really loved it. But she would only drink water with it no latte and asked to go on a dog walk later.
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ValentinaGermania
Faddywrite wrote:
Hi Tina thanks for the advice. I wonder if I am stressing too much as my daughters bmi is around 17 so not too low.


NO. They way down from BMI 17 to 14 is very short. In our case it took 6 weeks.
17 is no way a healthy BMI and she must grow at her age and develop a femal body and if she does not have enough nutrition and especially fats her body cannot do that. The time frame is small. I now have a nearly 19 year old that is sad that she has only A size with bras.

Faddywrite wrote:
Today she ate a chocolate brownie when we met with my family and although she only allowed herself to drink water witb it she really really enjoyed it. She did look at it on her plate v anxiously for a while and aftef she ate it asked if we could do a short dog walk later but I praised her privately for allowing herdelf to eat it.


It is great that she ate that brownie but it will not help much to tell her that she "just" needs to allow herself to eat that because in fact SHE wants to eat that brownie but AN does not allow it. In our family it did not help to praise my d for eating, she did not want to hear that and felt bad afterwards. May be different with your d.
Here it helped my d when I said she was required to eat that brownie and I expect her to do that now and there is no negotiation about that. They need someone to blame for food intake and that can be you. Then she can eat.
AN is a genetic disease and the gen defect is on gene Nr. 12 directly between diabetes and shizophrenia. They often hear voices that tell them really bad things in their head in the dark days.

Faddywrite wrote:
I said later that she only really needs to allow herself some more puddings etc to gain weight but she said no that eating a brownie is a once a month thing for her. She had to fill in a food diary for camhs tbis week and although it looks healthy there is still no puddings except youghurts fruit and sometimes a few biscuits.


Yoghurt and biscuits is a start. Are there other glucoses and fats in there?
Eating a brownie once a months is not normal for a 14 year old. She should be able to eat brownies daily if she likes them. Any restriction is a damage to her body and brain. There is no unhealthy food, it is all a question of amounts. It is unhealthy to eat only burgers but it is as unhealthy to eat only salad. She should eat all kind of food that is normal to eat in your family.
Keep feeding. There is light at the end of the tunnel.
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Enn

Faddywrite wrote:
If my daughters bmi is around 17 is she still so underweight that it affects her thinking etc? She allowed herself a chocolate brownie today for the first time in a few months. She did sit staring at it anxiously for a while but ate it and really loved it. But she would only drink water with it no latte and asked to go on a dog walk later.


You will hear here about "state vs weight many times. 

 toothfairy posts a lovely video on that that explains that it is not about the weight or BMI it is about their thinking. There is another video about how the weight targets that are set are too low. This is another Toothfairy special video. Note many have had to get over BMI 24 to see the brain healing.
So please search for them/videos. Hopefully she will also be here to post those great resources for you. 

In your quote you say the sat staring at for a while and really loved it. Your real D underneath all the fuss about eating healthy, I think really wants to eat. I wonder if you give her permission by not asking, but telling her to eat something she has not eaten in a while and really loved, if she would be grateful. She may yell and get angry, that is ED, but your real D wants to enjoy foods and you may need to be the target for ED so that she /real D does not feel guilty to eat it. It is a strange way to look at it , but it will come in time.

Maybe tying in the latte with other nice foods may help her? She may really need you to take over.
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Faddywrite
Hi yes good point..She seems very rigid and refuses this kind of food normally but I wonder if I need to take over more..Because the doctors and ed team said it isnt an ed but anxiety and maybe asd I havent been trying to make her eat her danger foods much but now I am considering that they may be wrong it seems like an ed to me. I am reading Susan Busbys fab book this weekend and have asked my hubby to read it too, so we understand more, then I think I will begin to reintroduce properky and hopefully we will also meet the camhs keyworker who can support us. x
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Torie
Faddywrite wrote:
I wonder if I need to take over more.


I think that is a very good idea.  It is hard to see a big downside to that, and the potential upside is HUGE.  With AN, they really need someone else (read: you) to make the decisions about food.  "I'm your mom; I know exactly what you need" type of thing.  With AN, they feel huge guilt for eating, especially anything tasty.  Like Tina, I found it best not to praise my d for eating but to tamp down my (outward) reaction as much as I could (while inwardly cheering wildly).

AN is such a confusing puzzle, and in this upside-down world, so much is counter-intuitive.  

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn
Faddywrite,
Have you actually seen an ED specialist team?
Or just a general mental health team?
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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KLB
I would recommend Eva Musbys book. It was really helpful and enlightening.
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Faddywrite
Hi she saw an ed team assessor who said within ten mins that she may have asd so discharged her as said there was no mental health issue. She referred to paeditrician who isnt sure re asd so we await outcome if that. Then we daw ed team two weeks ago as my D had gained only 3kg and her state of mind hasnt improved. This time assessor said there is some kind of disordered eating but not diagnosable ed. He refetred to general anxiety counselling. This was awful. In the first session the counsellor told my d that her eating is v good v healthy and that doing lots of walking is good. I was v upset and told our ed assessor. He discussed my ds case with the team again and now she has been given an ed team keyworker. I feel v angry that we were misled and my instinctive fears ignored.
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Faddywrite
Thanks so much, I really hope Camhs ed team can offer some help now x
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Enn
Hi FW,
I want you to be prepared. Ultimately, it will be you not CAMHS doing the work at home. I hoped that the specialists would do something. They don’t really.
You will be giving her her medicine. That is, food at home. I think what they can do is help with emotional support, strategies to get food in. Help you to feel supported.
Our team did not “do”anything but weigh her weekly. They did support my effforts to get fear foods into her. Her pediatrician prescribed meds, height and weight and discussed behaviour.
They were a shoulder to cry or whine on for me.
It was me and h that did the dirty work, so to speak.
So what I think I am suggesting is for you not to wait for them but to start now.
To feed her more is not harmful and likely very much what you need to do.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn
Faddywrite wrote:
Hi she saw an ed team assessor who said within ten mins that she may have asd so discharged her as said there was no mental health issue. She referred to paeditrician who isnt sure re asd so we await outcome if that. Then we daw ed team two weeks ago as my D had gained only 3kg and her state of mind hasnt improved. This time assessor said there is some kind of disordered eating but not diagnosable ed. He refetred to general anxiety counselling. This was awful. In the first session the counsellor told my d that her eating is v good v healthy and that doing lots of walking is good. I was v upset and told our ed assessor. He discussed my ds case with the team again and now she has been given an ed team keyworker. I feel v angry that we were misled and my instinctive fears ignored.


I hear your upset. This is all too common here you will find.
I see it over and over again how the parent’s intuition is usually correct.
So see my note above and start feeding. We are here for you.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Torie
Faddywrite wrote:
I feel v angry that we were misled and my instinctive fears ignored.


Yes, it makes perfect sense that you would be angry about that.   

I wonder if it would help to tell a little of how my story began.  If not, I apologize for the wasted time.  Back in 2014, my d suddenly had a basketload of scary symptoms:  sudden weight loss, deep dark depression with suicidal ideation, and cutting.   I didn't know who to trust or what to do or what to address first, and I felt like we were all drowning.

Somehow I found my way here to the forum and learned that a child/teen should not lose weight, especially not suddenly and that my d should regain the weight she had lost.  My understanding was that she would not "qualify" as having AN as she never stopped having her period and she was still at what was considered on the charts to be a "healthy" weight (but barely).  

Something was clearly not right about her relationship with food.  No doubt about that at all.  If I had followed her pediatrician's advice, she would have continued losing weight until her period stopped and her weight was low enough for diagnosis.  I have no doubt that she would have required hospitalization at that point as she was on a sharp downward spiral. 

And so I took the advice of the gentle warriors here and started refeeding my d.  I am after all her mom, and this is my job.  Honestly, it was scary, shocking, heart-wrenching and the hardest thing I have ever done.  Eventually I ended up taking her to one of the top ED experts in the US and she was diagnosed with AN at that point although she was nearly weight restored by then.  The point, though, is that it didn't matter if she technically had AN or not - SHE NEEDED TO BE REFED IN ANY CASE.

That is how I feel about your d.  I don't know if she has AN or not, but I do know that children should not lose weight, and that dietary fat is really important for growing kids as the brain is made up largely of fats.  I also know that over and over and over and over I have seen kids dragged back to health by their parents (here) and have seen that their thinking becomes much more rational about food once they have gotten to a healthy (FOR THEM!) weight.

So I urge you to feed your d.  I cannot tell you how glad I am that I followed the good advice here and did that myself.

As a side note, she had developed some ASD-esque behaviors, as is common among underweight kids.  So you could press on to have them evaluate that, or you could wait until she is weight restored and see if you still think she needs to be evaluated.  

Really, there is no downside to getting your d back to a healthy weight and once again eating plenty of fats.  The only downside is in waiting. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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