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

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Stella
Hello everyone,

I would like to introduce myself as well. We are a family from Southern Germany. Our story started already last year when our son (then aged 11) has been reducing food and starting exercises in March/April with AN being officially diagnosed in the middle of summer holidays. In June/July we started beeing suspicious, GP did blood test etc, but everything not sure yet. Last shock and eye-opener was welcoming him back after one week in the yearly scouts camp. Since You`ve all been through this, you can imagine. All in all he lost probably 10-12kg to finally 33,5kg at a height of 150cm.

Thankfully we were allowed to go on holidays the next week as a family nevertheless. We agreed a couple of breakup criteria with the psychological team (5 meals, at least 2000kcal, daily pulse and weight) and indeed our son gained 2kg within those two weeks. Mood got better as well.

From September to April weight was gaining very slowly but steadily with controlled 2300 kcal per day.

Then in April he started to vomit and rapidly lost weight again. We didn't realize this at once since he came up with quite a number of tricks for the weekly weighing at the GP. In early June finally we had to take him out of school. Since mid June he is now visiting a socalled „day clinic“ from 8AM to 4PM on workdays.

Weeks since then have been tough for him and us. After a weight decline in the first week (due to no calory amount set by the clinic) he gained about 3,4 kilos in 3,5 weeks with 2600 kcal until yesterday. Today weight went down by 0,4 kg to 34 kg, so now he’s on 2800kcal.

At home we are on full control day&night which he thankfully tolerates/ agrees to. We are counting calories openly since this is how we started it and the numbers are helping to calm his fears (he's always been friend with numbers since he was a small child). Our son mostly cooperates and up til now we got the agreed sum "into the kid" every day. His only fear food are lemonades but sometimes he even tries those. In the last weeks he’s been very much in need of me, especially in the evenings. We are talking very much about the disease and the clinic itself and I really can‘t imagine him being at an impatient station 24h without possibility to relax at a safe environment.

Day clinic is threatening once a week with inpatient treatment if weight gain doesn‘t succeed, which really, really frightens our son. I feel this as unnecessary pressure as he  is really cooperating and hope it won‘t demotivate him.

I’ve been reading here for a while but up till today didn’t find the energy to contribute myself. Thanks all for listening! 

Stella
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scaredmom
Hi Stella, Welcome.
I do hope you find the support and information you need to help your son. 
It is great he is cooperating and gaining that is the most crucial part of this illness. 
I feel that as the parents you should be making the decisions on the type of care you get. Please discuss with your team if you feel that something is incorrect. 
Also these kids may need a lot of calories to gain well. My d was almost 12 at diagnosis and to gain well she needed over 4000 cal per day. Your son may need a lot more than what he is on currently.
it sounds like you are doing very well!! 
Please ask all the questions you have. 
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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Foodsupport_AUS
Welcome to the forum. Sorry that your struggle has been difficult so far. As I am sure you have read it is not uncommon for things to seem to improve and to then go backwards again. In your case it sounds like things sound like they got worse. 
It is great that your son is co-operating at home and managing to get his meals in, are you sure that you have stopped the purging/vomiting?

Your son's intake seems relatively low. It is common for many kids to need way more than 2800 calories, so expect this to go up and continue to. 

I agree that threats of offering one form of treatment may sometimes be counter productive. At the same time it is really important that your son knows that you will stop at nothing, including sending him to inpatient care if this is what you truly have to do. His best hope for success is to regain and and continue to gain all weight he has lost and some more. It is important that he knows that you will supervise fully, will increase his intake despite his fears, will step in the way of his urges to purge. Doing this will not demotivate him, he will see how hard you are willing to fight for him. 
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.
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tina72
Hallo und herzlich Willkommen auch von mir 🙂.
Hier findest Du wichtige Infos auf Deutsch:
https://www.aroundthedinnertable.org/post/informationen-%C3%BCber-fbt-und-maudsley-therapie-auf-deutsch-9514879?highlight=fbt+deutschland&pid=1308835178

Im Moment ist für Dich wahrscheinlich der Nachteilsausgleich in der Schule ein wichtiges Thema.

"In the last weeks he’s been very much in need of me, especially in the evenings. We are talking very much about the disease and the clinic itself and I really can‘t imagine him being at an impatient station 24h without possibility to relax at a safe environment.
Day clinic is threatening once a week with inpatient treatment if weight gain doesn‘t succeed, which really, really frightens our son. I feel this as unnecessary pressure as he  is really cooperating and hope it won‘t demotivate him."

Evenings were worst here too. AN was very strong in the evenings and she could not be alone then at all and still seeks for company then.
Try to avoid IP if any possible, there are no good IPs here in Germany and at his age he will only learn bad stuff from the experienced sufferers there.
If he gains and is compliant there is no need to threaten him with IP. I would try to ask the day clinic team to stop that.

I agree with the others that his intake seems to be very low. He should gain about 0,5 -1 kg each week. In Germany the clinics often make them gain very slow as they think that will help with cooperation. But this only lengthens the pain in fact. It is evidence based that fast weight gain and fast weight restoration has the better outcome and speeds up recovery.

Please come back with all your questions, we are here to help you, you are not alone with that.
Keep feeding. There is light at the end of the tunnel.
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Stella
Thanks for your answers!
Regarding purging/vomiting: I am pretty confident we have stopped this at home. We are with him all the time including toilet and shower and he`s sleeping with me. I don`t know what`s happening in the day clinic. Until this week bathrooms there have been locked, since Wednesday they are unlocked again. Of course he`s not allowed to go in there alone and they say he`s never alone in a room. They told him and us if he would nevertheless manage to vomit there next step from their side would be inpatient treatment.

Regarding rules: we told him that as long as he follows the rules, accepts control and is eating as much as necessary (whatever this may get) we will try to avoid inpatient treatment. Exception of course would be weight decline and any unforeseen medical necessity. It feels like he has accepted this and - as said - he also completely changed behaviour under our control. Mostly he`s laying relaxed on the sofa, something what I haven`t seen for a long time. To be honest - partly because he`s now allowed to play on his mobile as long as he wants to. ;-)
He`s saying that he told the disease she has no chance to make him do things since my husband and I are controlling so much. And he not even once in the last 6 weeks asked us to reduce the control. I am so angry on myself that we didn`t start the full control earlier since I can see that it`s doing him really good.

I am aware that 2800 might not be the end at all. As expected he is not amused at eating more food. We just had a good discussion on what his body needs and I promised him that if weight may increase too fast (>1,5kg per week) we will go back to the last kcal amount. Not that I expect this to happen.
(And no, getting ones hair cut doesn`t make up a weight difference of 0.5kg...)

So, back to business and the next round of "no your belly is not fat at all".
Is there anything we can do with regard to body perception? Probably just feeding, I'm afraid. At least only about 400kcal to go for today.








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tina72
Is he eating regularly 3 meals and 2-3 snacks? It is important to keep his blood sugar level constant.
Is there a need why he is in that day clinic? I think you sound perfect in your supervision, why not do that at home 24/7?
I personally would not trust the staff in IP or day clinic here...maybe just my bad experience in Hessen.
Do you know that you have a legal right to leave work and ask for Pflegezeit at Pflegekasse in Germany to care for him?
If you could supervise him at home he might be able to go back to school at least part time - maybe a good incentive to use. And a good distraction. And a bit normal life...

"I am so angry on myself that we didn`t start the full control earlier since I can see that it`s doing him really good."
Do not punish yourself for that. We all did not know that. We all were not prepared for that disease. Someone here said "this was not in the baby books" - so true.

"Is there anything we can do with regard to body perception? Probably just feeding, I'm afraid. At least only about 400kcal to go for today."
To be honest - no. It will get better with more weight and full nurished brain (fats and glucose are important). It does not help to talk about that, it is not rational. You can tell him a thousand times that his belly is not fat and he will not believe it. He really thinks he is.
Keep feeding. There is light at the end of the tunnel.
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Stella
tina72 wrote:
Is he eating regularly 3 meals and 2-3 snacks? It is important to keep his blood sugar level constant.
Is there a need why he is in that day clinic? I think you sound perfect in your supervision, why not do that at home 24/7?
I personally would not trust the staff in IP or day clinic here...maybe just my bad experience in Hessen.
Do you know that you have a legal right to leave work and ask for Pflegezeit at Pflegekasse in Germany to care for him?
If you could supervise him at home he might be able to go back to school at least part time - maybe a good incentive to use. And a good distraction. And a bit normal life...


Yes, he has currently 3 meals, 3 snacks.

In the beginning of June he was in real bad state from medical point of view. At this time we decided for day clinic and being at such low weight he got prioritized.
Advantage of day clinic is, that by just being there he has much more therapy and GP-sessions than he would have otherwise. 24/7 at home will follow afterwards, since day clinic is not for long term stays. My intense hope is that he can leave day clinic in about 4 weeks then we could still go for our yearly summer vacation together. This would be so good for him, his younger brother and us.

Regarding Pflegezeit:
I have a very understanding boss who gives me a lot of flexibility in weekly working hours and home office options. Nevertheless I am the main income earner in our household, complete job quitting is appealling but financial difficult and would propably load new sense of guilt on my son.
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Foodsupport_AUS
Quote:
I promised him that if weight may increase too fast (>1,5kg per week) we will go back to the last kcal amount. Not that I expect this to happen.
(And no, getting ones hair cut doesn`t make up a weight difference of 0.5kg...)


Sorry, no, no, and no. I would suggest backtracking on this very quickly. Weight gain is not linear. If there is a higher gain one week it is often followed by a lower gain the next on the same calories. Moving down intake can rapidly lead to weight loss. He will need an increased intake in calories for many months, perhaps years given his age after he is back to a healthy weight. Reassuring him like this is reassuring his eating disorder. 

As for his body image. It is often best not to deny or reassure - a new really important skill to learn. When we reassure their anxiety we reinforce it and validate their concerns. Let him know that you have heard he is distressed/anxious but then  let him know that it is not helpful for you to talk about it, offer a hmmm, or perhaps distract him. 
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.
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tina72

Weight gain is not linear. If there is a higher gain one week it is often followed by a lower gain the next on the same calories. Moving down intake can rapidly lead to weight loss. He will need an increased intake in calories for many months, perhaps years given his age after he is back to a healthy weight.


This is totally correct. We had weight gain, weight loss and weight maintainance on exact the same intake in 3 following weeks. With weight gain the metabolis incresed 2 times and we had to add more food. My d is still eating the same amounts in year 3 only to maintain her weight now as she is grown out.
Keep feeding. There is light at the end of the tunnel.
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tina72
Stella wrote:

Regarding Pflegezeit:
I have a very understanding boss who gives me a lot of flexibility in weekly working hours and home office options. Nevertheless I am the main income earner in our household, complete job quitting is appealling but financial difficult and would propably load new sense of guilt on my son.


When he comes home, someone will need to be there 24/7 for a long time or he can go back to purging.
You get paid when you take leave for Pflegezeit. Not much, depends on the Pflegestufe, but you get money. If you are the main income earner, maybe your partner/hubby can take a leave? Are there grandparents? It will not work when he is at home alone then.
Keep feeding. There is light at the end of the tunnel.
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Stella
tina72 wrote:

When he comes home, someone will need to be there 24/7 for a long time or he can go back to purging.
You get paid when you take leave for Pflegezeit. Not much, depends on the Pflegestufe, but you get money. If you are the main income earner, maybe your partner/hubby can take a leave? Are there grandparents? It will not work when he is at home alone then.


We are aware of that. Thankfully we are in the lucky situation that we can both work homeoffice - and if necessary reduce hours as much as needed and/or shift workload into the evenings or weekends. So someone is always at home and available, already today. Grandparents, aunt and good neighbours are living close by and willing to help out if needed.

Regarding weight gain: I get your point with not giving in to anxieties and will try to remember. Anyway, I don't think he will ever get a constant weight gain of over 1.5 kg/week.

What are you doing with clothes when your kids gained? So e.g. he has his trousers tightened, what I am now redoing slowly (and secretly). But I can't rework his . belt. 

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tina72
I am with you, you will for sure not see a constant weight gain of 1,5 kg every week. This is very unrealistic.

Clothes:
Put too small clothes away and buy new ones, best would be just to replace same brands if possible in a bigger version and take off all labels and size information if possible.
Belt: Buy a new, bigger one, if possible the same. If not possible tell him the old one is damaged in the laundry (buys at that age normally do not know that belts are not going to the laundry...I hope...). Or "lose" it in the house somewhere and tell him until you have found it he must wear another one.

Trousers: best are jogging pants, not those super thin jeans

It is great that you can work at home and have family around. Best start for recovery is 24/7 supervision.
Keep feeding. There is light at the end of the tunnel.
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Mcmum
Good morning Stella.  I just wanted to say hello.  I am also a mother of a boy, now aged 10 and a year in. You've had excellent advice here but keep asking.  It's a life saver.
The main things I'd endorse are sustained high calories, especially fats, minimal discussion if possible, secret clothes shopping and replacement of too small clothing and lots of patience interspersed with love, love, love.  That includes self care too, however you are able to do this.  For me it just meant stopping beating myself up!
Our son is still on a very high calorie, three meals, three snacks diet, he still needs constant vigilance but is much better than he was.  With food and advice here and closing down every loop hole, hopefully your son will come back to you too. Sending warmest wishes xx
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Stella
Hi all,

thanks again to all of you!
Short update: I think our days at the day-clinic will soon be over.

Yesterday I had a very strange talk with the medicin who's taking care of our son. On the one hand she asked me to loosen our control at home since this would fit more to the open environment of the day-clinic. On the other hand she proposed in the next sentence again inpatient treatment as our son is very very sick and they are wondering whether day-clinic is enough.
Well, I asked her for suggestions where we should loose the control and she was talking on shower/toilet situations. No-go from our side, especially since also my son insists on needing it. Then she seriously suggested the weekly scout meeting. No. Last thing was letting him drive to the clinic with the "patient busses" like all the other kids do, since currently we are bringing him by car. He doesn`t want to what I can really understand (one hour more clinic feeling in the bus vs. 15 min in the car with us). So another no from my side, which led to 15 minutes discussion. To show my good will, I proposed to let him go to his guitar lessons alone without me sitting in the back.

Today we got a call around noon. In the morning they catched him trying to drink water before weighing. (Honestly: there is a bottle of water standing around all the time, what do they expect from an addictive?) Then weight went down for 0,3 kg (yep, he did drink two days ago). What the call left out and our son told us afterwards is that then two people there after each other tried to convince him into IP telling the kid that at a certain point day clinic doesn`t work any more (I agree) and only alternative is IP. And how good it would be to meet other kids who have the same issues as he has. Well then he started crying, broke together and slept for 1,5 hours. I`ll leave out the whole phone discussion - lastly landed at "You would decide against IP even if it was our strong recommendation" "Yes, we agree that day-clinic is not the right setting, but we will first try it on our own".
The thing is, she was not able to give me any reasonable arguments pro IP despite of "he has to accept his sickness" and "there he has a bed of its own and some room for retreat". It`s just like they can`t even imagine us doing this on our own and maybe offering advice, help or at least guidelines.

Tomorrow official discussion there together with husband. Hopefully last day for my son.

I`ll keep you updated.
Stella

PS: regarding guitar: son prefered "as a sign of freedom" to carry his guitar from the car to the guitar lesson himself,since not so embarassing ;-). He didn`t mind at all me being in there and - since my son is quite good by now - I had my best 30 minutes of the day relaxing and listening to his great teacher and him playing.



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Mamaroo
Hi Stella

I'm not sure why they want you to hand back control so early or why they want you not to watch him so closely. And in the next sentence it is precisely what they're asking for when suggesting IP.

My d was in IP, because she was medically unstable, and she was discharged as an outpatient, because she was too young for the day clinic. We were able to refeed her at home and at school while going to medical appointments once or twice a week. So unless your son is medically unstable, he doesn't need to be inpatient. Also I read that he is eating what you give him, so if you can stay at home and supervise his meals, then that us better, since it is the next step to normal life.

As for the clothes, I bought my d a t shirt, which fitted as well as the next size up. I cut off bot shirts' labels. So when I saw the shirt is getting tight, I would swap it on laundry day. The belt would just get 'lost' and buy a new one.

Sending you lots of hugs 🤗🤗🤗🤗🤗
D became obsessed with exercise at age 9 and 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. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
All you describe is totally normal for sad bad treatment in Germany.
Take him home. You are doing all that is needed much better than they do. You are more expert than they are. You have a good gut feeling of what he needs and how to avoid difficult situations. Do not let him go IP here if possible. My d only learned bad things from the other kids there...
Keep feeding. There is light at the end of the tunnel.
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Stella
So today we took him home. Had another talk with the people there. In the beginning they wanted to hear again our son's opinion on IP which we explicitly did not agree to since we did not want to put him under even more pressure and since we are the ones who are in charge, not he. They reluctantly agreed, but couldn't help from interrogating him in the end again whether he knows what our plan is, that day clinic advises not to do so and that he may always decide for IP.
Wow. If it wasn`t for the kid being there in the room we surely would have gone mad, but so we just took our son and dissappeared.

Later on I talked to our therapist who he has been seeing during the last year once a week. She´s been in touch with the day clinic since she´s also connected via other patients. She told me that she has a bad gut feeling on ambulant treatment and would recommend IP as well. Well, I told her that we are going to try it first at home but that I could understand if she didn't want to share our way. Lastly she proposed to meet us in 14 days and to see how things went then. She has never heard of FBT, but is at least willing to look it up.

The sad thing is what she told me about the guidelines she has to follow. As far as I understood her the aim is to take away control from parents with the goal to save the relationship between children and parents by passing all stressful items to professional staff. It seems also that they are not used to parents in our town who are not following advice in such a clear way. She also told me (which she probably wasn`t supposed to) that day clinic or IP would have had the guidelines to call the youth welfare service if my sons weight would have been a little bit lower.

To be clear: my son is medically stable and has earned weight rapidly until last week. 30 Minutes ago he told me that since last week he was allowed to go to school (next door to day clinic) alone (!) twice a day and that he used the way whenever possible for vommiting.  So here is the explanation for no further weight gain in the last week. In IP he wouldn`t have got an 1:1 control and he would have gone to (the same) school as well.

It can only get better. Tomorrow we'll start our own program with blind weighing. Would you recommend we also see an pediatrist in future (as day clinic suggested) or should we stay with our GP whom we trust and who is almost a friend of us?
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tina72
"The sad thing is what she told me about the guidelines she has to follow. As far as I understood her the aim is to take away control from parents with the goal to save the relationship between children and parents by passing all stressful items to professional staff. It seems also that they are not used to parents in our town who are not following advice in such a clear way. She also told me (which she probably wasn`t supposed to) that day clinic or IP would have had the guidelines to call the youth welfare service if my sons weight would have been a little bit lower."

Take your feet and RUN. This is not a good therapist. It is embarrasing enough that she never has heard of FBT before.
They also threatened us with Jugendamt but with no power. If he is medically stable like our d was when we took her home they can do nothing.

I would recommend very much to contact Dr. Roslyn Binford-Hopf in Königstein/Taunus. She is the only licenced FBT therapist in Germany and she does Skype sessions. You will not need her very often but in case of problems with doctors or Jugendamt you can always say "here, this is our therapist, she is highly recommended and a licenced therapist here in Germany." We got rid of all these bad guys just by waving that flag...

And come back here as often as needed, we can help you a lot. I have learned more about AN and refeeding here than in hospital, with German therapists and with FBT therapist together...🙂
Keep feeding. There is light at the end of the tunnel.
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Stella
So here is an update from our side, a lot of good stuff, some unexpected and some still to work on:

The good stuff:
  • after one year of more or less stagnancy our sons weight has increased (for us) surprisingly well: est. real weight beginning of June: 30 kg (72% WFH), mid july after day clinic 34 kg (81% WFH), yesterday 40kg (96% WFH). YAY! We changed to blind weighing, helped a lot with anxieties.
  • Mood. I think since the end of July we've seen rapid changes in S's mood. Real changes, not the ones he's pretending to make us parents happy. Realized the first time end of July when I was outside the room (cooking!) and S was doing a puzzle and listening to radio. Instead of being nervous due to me cooking devil's meals he was singing to the radio, totaly relaxed.... Right now, he's laughing to jokes younger brother is reading out and asking for another one. Not possible three month ago.
  • Behaviour. Getting so much better, only rare fallouts, which we can handle.
  • Cognitive capabilities. Almost as before ED. He reads and reads and reads, hasn't done so for a year.
The unexpected:
  • Holidays. Yes, we were afraid and went nevertheless, 2 weeks. And it was great for the whole family. Swimming and having fun in the sea every day gave S a lot of self esteem and body consciousness, not at least since he could show off with his excellent swimming/diving abilities in front of his brother. We were even eating out, which worked well 2 days and not so good on 1 day - but this pizza was extremely cheesy and very unappealling. On the other side almost no weight gain during this time, we thought due to swimming and accepted it, as no regress nether. Afterwards S told me he had been throwing up twice in the first week during unattended moments in the garden. Thinking positively, at least he was able to stop it himself.
  • Sleep. 6 to 6,5 hours have alway been perfect for me. Currently I need 8 hours, which is fine for me as I`m sleeping with S anyway. S on the other side is going back to his old "sleeping less than any other kid in my age"-habits (not intended, he simply just can't sleep more, doesn't need it). It's already happening that I'm going to bed before S.
  • Own attitude. Since a few weeks I somehow feel confident that ED will be broken somewhen in the near or far future and we "just" have to sit it out. I am confident that the memories of all these worries we have right now will be fading away then, similar to the memories of the stressfull aspects of baby time with my sons.
  • Even though husband and I can almost never communicate alone, we found that we are a good team. Unlike before we rarely question any decisions the other one makes and everyone has its areas of responsibility (mine being weight-gain!). This simply saves energy.
To work on:
  • ED is still here and surely will be for a while. S still needs me at night (for control and proximity) and S is saying himself that he still needs our helping control, especially in bathroom. After meals, we cannot leave him unattended. During the day he is always with husband or myself.
  • School is starting next week, no PE. We live closeby and will be able to come and supervise snack. Of course we are afraid of throwing up in school, but my son agreed that I may do "smell-checks" (I hate it, I'm sure some of you know what I'm talking about) and will be adding extra food at even the smallest case of suspicion. Hopefully this is scaring enough for ED. If weight goes down, no school.
  • Continuing weight gain.
Thanks for reading, it's so helpful to know that people do understand.
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scaredmom
Well that is great to hear!
You are all doing so well!
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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Foodsupport_AUS
Great to hear that your son is doing so well and there has been marked improvement. His lack of sleep however does sound concerning. Sleeping poorly can be a sign of other things happening and it may be worth checking things out. https://www.sleepfoundation.org/excessive-sleepiness/support/how-much-sleep-do-babies-and-kids-need
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.
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sk8r31
So many positives this summer for you & your family!  So very heartening to hear how well things are going.  And I sense your confidence has grown, and you'll be able to manage, no matter if there are little 'blips' along the way to full recovery!  Congratulations on all your hard, hard work to get to this point.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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tina72
Hi Stella,

thanks for this wonderful update! You are doing a very good job there!
This made me laugh:
"S on the other side is going back to his old "sleeping less than any other kid in my age"-habits (not intended, he simply just can't sleep more, doesn't need it)."
I think wether all ED kids do not sleep much or is it part of them being highly intelligent in most cases? My d never slept much in her life, only in the dark days when she was sick she wanted to sleep 10 hours and more to avoid eating. When she was a baby she never slept, not in the day, not in the nights. She was 5 years old when she slept through a whole night first time...
So I know what you mean that you go to bed before him 😂...
Use this time now for more self care. You must be very exhausted. Self care is very important and we are all not good at that....
Keep feeding. There is light at the end of the tunnel.
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Stella
Thank you all for your replies and your support, it feels really good.
@Foodsupport_AUS : Thanks also for the link, S seems to be still within limits, but in the lower range of course.

In fact, sleep has always been an issue. When he was 1 year old, we had to limit his day sleep to 30 minutes because otherwise he wouldn't sleep in the evening before 11PM. We had a hard time until we found this workaround. When he was 1,5 there was no more day sleep (and no break for us).
Before ED he went to bed 10.30/10.45 PM, and managed to sleep within minutes. Quite late compared to some of his peers but every(!) morning he was awake and happy before us and without any alarm at about 6.15/6.30 AM.

At the same time when ED started (but we didn't know yet), he also heard or read somewhere that kids should have more sleep (healthy!!!). So he insisted on going to bed earlier at 9.45/10 PM. But of course he wasn't able to sleep, came back to us every 10 Minutes crying that he can't sleep - on some days until 12PM. This lead to very strong anxieties on his side. He was so afraid that he may not be able to sleep, he wanted to go to bed earlier (wasn't allowed before 9.45), didn't dare any artificial lights after a certain time etc. I talked to him to trust his body in terms of sleep and needed to promise him every day that it's not a problem if indeed he would be tired the next morning. We had this for 1,5 years.
Difficult to communicate to other parents :-)   I remember a very emotional discussion with the mother of a classmate of him, who is still 100% convinced that all kids don't sleep enough, sleep is the solution to everything and whose own kids have to go to bed at 8. I do like this mother but I will never again discuss with her on sleep or mobiles for kids.

With the real refeeding going on since June this anxiety started fading away as well and is almost gone by now. Now he's the one asking to stay up longer and this always makes me smile. With school starting again next week there will be more rules from our side and I'm sure that he will need more sleep then.




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tina72
We also stopped sleeping during the day at age 1,5 and I can remember how the other mums at the playground looked at me when I waked up my d after a 5 min nap... but without that she would not sleep at least 5 hours in the nights. We were totally exhausted at that time. She was not crying, she was totally happy in the nights at 2 a.m. singing in her bed...

Would be intersting to know if other ED kids had problems with sleep as a baby/toddler too.
Keep feeding. There is light at the end of the tunnel.
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