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
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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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