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KLB Show full post »
Enn
So a couple of questions:
Is this consultant a medical specialist ie internal med or ED specialist?
If not ED specialist can they find one to consult with? That way there is a broader team of experts to help your son together.We had a social worker with the team that does only ED and she helped us too while IP and the medical and psychiatric team.
Would they,could they consider meds when he gets agitated about exercise? That would help him and you. Also if he is very agitated physically he could pull out the ng. Don’t want to scare you but if his need to move and go and not have an ng is so strong I want you to be prepared. I think you should be honest and bring up the troubles you had with the medical team so far and that you expect and deserve a lot of support when it is time to go home. Have them ,with you and h’s input, draw up a plan for every eventuality you can think of. Also ask for support for you and h. Someone to talk to for you both may help, if that was not done before. I reached out many times to our Ed social worker on the phone for help. I did not need to go in and so could be home with d and no distrupt her schedule . I found that helpful.
There should be an expectation that he will only be discharged when is weight is x kg up and treatment for exercise compulsion clearly laid out etc...
And when you need to bring him back to hospital his admission will be expedited .
Thinking of 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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KLB
teecee wrote:
KLB
I certainly think it’s a start and if you are able/willing to help with the care then great. He is still your lovely S and will find comfort from you being there even if ED doesn’t let him show it. If things go rapidly down hill at least he is in the best place for them to see that and evidence it. This will strengthen your case if further threatmebt in a secure setting is required.


Thanks teecee. I hope you're right that he'll find comfort in us being there.

edengirl wrote:
KLB
We too began this horrible journey with our D about the same time you did with your S.  So many similarities.  She is also very athletic- has had to face that soccer and cross country will no longer be in her life until we get her well.  I was actually telling my hubby about your story last night as we were reeling from yet another panic attack with our D.  Looking into the eyes of someone you gave birth to and seeing not a single sign that they are "still in there" is heartbreaking.  I also take comfort in reading these posts and reminding myself that people have actually made it through this and had their children return to them.  We all have to hold on to that to survive this.  Since we are new at this also I don't have any real wisdom to offer you but please know there are other parents just like you and your husband out here who are fighting the same battle...you are not alone.  Keep fighting....you are an inspiration to many of us.


I'm so sorry to read you're in this nightmare too with your d and thankyou so much for your support. I have my fingers crossed that your d comes back to you as soon as possible.
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teecee
KLB
I don’t think it I know he WILL find comfort from you being there. What struck me from talking with my D about her ‘crisis’ months was that she couldn’t vividly remember what went on but she always felt our presence in a supportive, caring way and that made her feel safe. He will feel it...believe me. You are so strong and amazing parents...believe that. Xxx
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KLB
scaredmom wrote:
So a couple of questions:
Is this consultant a medical specialist ie internal med or ED specialist?
If not ED specialist can they find one to consult with? That way there is a broader team of experts to help your son together.We had a social worker with the team that does only ED and she helped us too while IP and the medical and psychiatric team.
Would they,could they consider meds when he gets agitated about exercise? That would help him and you. Also if he is very agitated physically he could pull out the ng. Don’t want to scare you but if his need to move and go and not have an ng is so strong I want you to be prepared. I think you should be honest and bring up the troubles you had with the medical team so far and that you expect and deserve a lot of support when it is time to go home. Have them ,with you and h’s input, draw up a plan for every eventuality you can think of. Also ask for support for you and h. Someone to talk to for you both may help, if that was not done before. I reached out many times to our Ed social worker on the phone for help. I did not need to go in and so could be home with d and no distrupt her schedule . I found that helpful.
There should be an expectation that he will only be discharged when is weight is x kg up and treatment for exercise compulsion clearly laid out etc...
And when you need to bring him back to hospital his admission will be expedited .
Thinking of you.
XXX


He is a general paediatric consultant, not an ED specialist. He'll be liaising with the dietician to manage S's medical care. We asked if s would be seen by CAMHS whilst on the general paediatric ward and the answer was a bit vague, and along the lines of it won't be much use whilst he is in this state, but they will liaise with the consultant. Im not sure there is such a thing as an ED specialist here. We did talk about medication and they will use it if/when he becomes agitated and they feel there's a risk and they're definitely going to be giving him something to help him sleep while he's with them.

When I asked if he would go onto an inpatient program once medically stable they would only say they'll monitor his progress and review at that stage and there are very limited beds available (read no beds), which of course we already know. This is why they're desperate for us to try to do it at home. There's nowhere for him to go. The consultant did say that he wouldn't discharge him until he was happy that s's heart rate was consistently normal and that would likely require several kilos of weight gain and bed rest. Although he's not an ED specialist he seems very helpful, and has some knowledge I think?

I don't know much about ng tubes. Could anyone point me to some useful, informative resources?
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Enn
I think that doc sounds good. Ng tubes are nasogastric/ nose to stomach and can be used to feed or suck stuff out of the stomach. They are not permanent and are generally taped to the side of the nose. Feeds are either bolused ie you give liquid feeds down them a few hundred mls at a time or continuous ie like a drip like 8 hrs at a time a larger amount. They are put in at the bedside and not truly invasive. Like a straw. Dieticians in hospital are very knowledgeable about what would be best for him for ng feeds. In Canada the dietitians generally are in charge of ng feeds. I hope that helps. I know this is such a difficult time for you and you are learning so much while he is in a good place..
All the best
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
As I read your post again, you say they are desperate for you to do it at home as no beds . In my opinion I think he is a severe case as evidenced by his behaviour so who are those beds for but for someone just like him?? Just saying .
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
KLB wrote:
Should we have pushed or be pushing for something else? Do you think this plan is sufficient?


A diagnosis.  He needs a diagnosis.  (Apologies if that has already been done and I missed it.)

And nutrition.  He needs adequate nutrition NOW (not just tomorrow) and every day, every meal, every snack from now on.  How do they plan to make that happen?

Can YOU (not your son) meet with the dietitian?  Like the other "professionals" we encounter, they can be great or they can be very damaging.  Personally, I don't see any reason for a child to meet with a dietitian.  You are the mum, and it is your job to plan and prepare his meals.  His only job is to eat what you serve.  It should not be his job to be in the meal planning business.

At the risk of being too blunt, AN has the highest mortality rate of any mental illness and comparable to childhood cancer.   That's how seriously they should be taking this.  (I can't tell if that is happening or not.)

Geez, I hope I don't sound too hard.  I'm pulling for you so hard it makes my brain hurt. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
There are definitely some positives  I can see from your post regarding where your son is. It is common in a number of countries for children to be admitted to a general medical unit for medical instability. I am not clear KLB from what you are saying if they are insisting on him eating full meals now? If not then the plan is inadequate. Medical instability means your son is at  risk of serious heart complications from his eating disorder. A day to wait for treatment is too long. 

When my D was admitted to hospital there was a baseline meal plan that was started for all children with eating disorders and a protocol that was to be followed immediately on admission. Three meals, three snacks, timed meals, no exercise/bed rest, all trips to the bathroom/toilet supervised etc. Meals not completed were to be supplemented with meal replacement and nasogastric tube to be inserted if this could not be completed. If meals can be completed orally it makes a lot more sense for your son to be fed orally but he absolutely needs the nasogastric (NG)tube if he can't do that.  At the hospital my D was at there  were  a series of meal plans  - 1. re-feeding for those at high risk of re-feeding syndrome, then meal plans 1, 2,3,4,5 and 6. Each plan had around a further 500cal per day  added and the patients worked up through those depending on weight gain. (aim was a minimum of 1kg per week) . The dietitian assigned the meal plan to be used and then that was used until the next weigh in, when they assigned the next one. Calories/exchanges were not discussed. There was a list of meals /snacks that could be chosen, and there were 3 "dislikes" permitted that were permitted to be avoided- can ie. can choose something else. 

Something similar to this should be happening now.

It is great that there is a plan for weight gain and medical stability now.  Here in Australia for  younger children and adolescents this is the only higher level of care available. Otherwise it is back to us re-feeding at home. Some kids with a single hospital admission realise  that they never want to go back. It is worth considering if your son is coming home with you a plan for making your home just like the hospital - it may be what he needs to get better. Others will need support that you just can't offer. 

As for CAMHS now the main reason for getting him assessed now is to assess his degree of suicidality. Hopefully this was as you say just a self calming thing but if this was a genuine attempt he went very close. If he is suicidal he may not be safe to go back home. 


D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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KLB

Today s had an ng tube inserted for the first time after refusing breakfast. I had to leave the room because I couldn’t handle the distress it was causing him. I just couldn’t bear it. I know I should have stayed to comfort and support him and I feel horribly guilty about it now but I couldn’t fake it at that moment. I had to come home and give myself a good talking to. Hubby and Uncle 1 are both with him at the hospital. He’s had all his calories via the ng today, which has made the exercise compulsion go completely out of control so hubby & Uncle 1 have had their hands full. They’re going to start him on meds tomorrow, likely olanzapine to see if that helps reduce the level of compulsion/anxiety.  

We saw the dietician who immediately prescribed the ng feed and produced a meal plan. She’s starting him with 2000 calories a day and will increase by 500 every week until he’s consistently gaining a minimum of 1 kg/week. I’m not sure that’s enough to start with but it’s definitely more than he was getting because if he doesn’t eat it will go in via an ng and we didn’t have that option before. She would like him to reach a bmi of 18 before being discharged from the hospital (currently its 15.8) which would mean a gain of 6.5kg. She did say he might be considered medically stable before that happens though, and it would depend on beds as to whether they could keep him in for longer or not. I know the consultant said he would like to keep him in until he’s gained several kg’s so I’m hoping that means the same as the dietician said. She also said if there was an ED unit bed available she’d recommend he went there if he’s deemed medically stable before he reaches bmi 18 rather than staying where he is. This process is so complicated and confusing but basically she wants his bmi to be 18 before going home but she can only recommend that, its ultimately the doctor’s decision. I asked what weight she thought would signal weight restoration and she said she didn’t know at this stage, it was too early to tell, which I guess is better than a blanket one weight fits all statement. Thankyou Food Support Aus because I read your post just before I went in to meet her and felt much more able to ask questions and for certain things to be put into place.

I’ve spent the day torturing myself by reading up on exercise compulsion/addiction and anorexia, relapse rates and looking for information about swimmers/swimming in particular. S would be starting back with his swimming performance training programme this coming week after a season break. We stopped his season early in August and said to him if he could gain weight and show us he can eat consistently we’d consider letting him go back. How naïve we were! End of September and he’s in a worse state now then he was in August. I wonder if this is why s’s exercise compulsion/anxiety has been so strong the past week or so. He knows training is starting and he’s not going to be there. We’re going to have to speak to his coaches and let them know exactly what’s happening. And his school. We haven’t spoken to them either.

Hubby should have gone back to work on Sep 17th for his 8 week cycle until 12th Nov but he managed to get someone to cover this whole cycle for him so he’ll be home until 10th Dec at least. He’ll probably have to do that cycle as we can’t really afford for both of us to be off long term. I’m dreading him leaving, I’m not going to lie.

Torie - when we see CAMHS this week I'm going to push for a proper diagnosis as we dont really have an official one yet. Thank you.

Also thank you to everyone else here that's commented. It means such a lot.I hope all of you are having a positive day.

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ValentinaGermania
Hi KLB,
do not feel bad about not being able to see that tube going in. I had to leave the room when my d was weighed in hospital for the first time because I could not stnad to see her naked. You will get better with this and he was not alone there so you need to care for yourself at that point and that´s what you did. I would have done the same thing.
Try to talk to the coaches and to school if possible soon because you will need their help. The school can help you a lot, if they need ideas what to do you find some guidelines for schools on Eva Musbys homepage. School has enrolled the red carped for my d and helped us so much with transition, that was the only thing working in our system here in Germany.
I am sorry to say that he will not be able to go back to swimming team for a very long time but I am sure you know that already.
Dietitian seems to be good. They will need to calm him down in the next days but it will get better when the food gets in. Try to make him eat small amounts of real food in addition to the tube so he will not forget how everything tastes.
Please keep us updated. We are with you in our thoughts.
Tina72
Keep feeding. There is light at the end of the tunnel.
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debra18
Is there anything you can use as a distraction and to help reduce his anxiety? You said he likes water. Maybe music that has sounds of nature and water. Also find something you can use to reduce your own anxiety. I enjoy coloring and it has helped a lot for me before and after meals.
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Torie
Oh gosh, it sounds like a super difficult situation for all involved.  Ugh.  But it is really great that he is getting the help he needs.  I can't tell you how relieved I was to read that they have started an ng tube.  He needs to see that the nutrition IS going to go in, one way or other - he has no choice in that.

I agree with Tina that it would be good to try to have "him eat small amounts of real food in addition to the tube," or at least come as close as he can.  Someone here had a d on an ng tube for a while, and she said the foods that he continued to be exposed to him were easier than the foods that vanished for that time.  Even if you can't get him to take a bite, it still helps for him to see the food, to smell it, to have it near him, to hold a forkful in his hand (if you can get him to do that).

I'm also really glad that your h is able to take off this next cycle of work.  Yay!  The first steps on the journey back to health are a really tough road.

Thanks so much for taking the time to update us.  I'm sure everything is still an overwhelming blur at this point.  

Please remember that we're with you in spirit. xx

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

KLB, 
What an eventful few days! I like your medical team and the dietitian. 
As for a diagnosis, have you asked the medical doctor? They really should know what it is? I think you know what it is- I did too but when it was spoken by the team, it made it real for me. 

"I wonder if this is why s’s exercise compulsion/anxiety has been so strong the past week or so. He knows training is starting and he’s not going to be there." Great observation- it could well be. 

I hope you draw comfort that they are going to put the weight on him, give meds to help the anxieties, and keep him until he is stable. It sounds like they are including you and H's concerns? I hope so. 

December is some months away, when H is supposed to leave and hope S is in a better state when that happens, so that is is less stressful for you.

All the best
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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pettelly
Wow, you've really been through it. How awful for you all. 
I remember my D having a psychotic episode after eating what she thought was too much. I had to call an ambulance in the end and we were blue-lighted to a psychiatric hospital. I couldn't quite believe how in the course of 2 months we had gone from a healthy, fully functioning girl to this, where had we landed? It was surreal. 
My D refused meds and medical team allowed her to make this decision (not something I agreed with) but she did occasionally need olazapine to control the psychotic episodes post eating. It worked but completely knocked her out so not sure how she could have functioned on it although I assume she was on a higher dose as she only took it for acute episodes.
Honestly, this DOES get better. You're at the bottom now but you're getting help, he'll put on weight and you'll start to see your old S back. It's a long road for sure and we've been on it for 14 months now but my D is mostly back. We still have work to do to really get rid of this beast but nothing like where we were a year ago. I know it's hard to see but stay strong and it will happen. 
The advice here is phenomenal and I am grateful every day for the wonderful community here. 
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teecee
Big hugs from Yorkshire too.
I think you know what I’m going to say about you having to leave when the tube was inserted. Avoid being hard on yourself...we don’t have to force ourselves to watch things that are sometimes too traumatic for us. It’s ok to give yourself a break. I know for a fact he probably won’t even remember who was there when he recovers.
Secondly I’m so pleased H is with you for the next few months. In my experience so much can happen in weeks let alone months. Things will be much further forward by then.
Xx
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