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Hebrides

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Reply with quote  #26 
Thanks, Sotired and mjkz, for your experience of appeals against sections - nothing more has been said either by staff or d on this front, but I am at least a little reassured that it would seem unlikely any appeal would be upheld. 

I am finding d's continued almost total lack of communication over the past 3 weeks (refusing to speak on phone - after always wanting to talk each day; not responding to texts, fb messages, other than the briefest of answers to essential practical questions) immensely hard to bear. My instinct tells me to continue sending her supportive messages, reminding her of our love for her, and our belief that things will get better etc etc and that to stop doing so would send the wrong message entirely ie that she is not worth communicating with and we are abandoning her. That's not as bad as the refusal to speak - I feel as though I am losing my grip on how she is day to day, and although I try to touch base with the ward staff each day, it's not the same as speaking to d and hearing the tone of her voice...

We had a pretty grim visit midweek - family session, with d curled up in a ball on the sofa not engaging at all, other than a few shoulder shrugs, nods and head shakes, followed by an afternoon where she seemed angry and tetchy, and didn't want to play games or have any kind of conversation with us. I have been with her for the last 2 days, and while she has been less frosty, any attempt at all to talk about anything other than the mundane, everyday, practical stuff was shut down by her immediately. She continues to not eat ((taking all her meal plan through supplements with the occasional ng feed) and is still on 1-1 observations. In order for there to be any hope at all of home leave at Christmas,which she of course desperately wants, she would need to be off 1-1s at the very least, I assume. I know it's not the end of the world if it doesn't happen,but we would of course love to be able to bring her home, however briefly.

Sorry - reading this back just sounds like a big whinge. I suppose my positive belief that she and we can get through this is getting a little frayed and cracked - and that is the most frightening thing in the world. Deep breath - and carry on.

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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Reply with quote  #27 
Dear Hebrides,

Whinge away whenever you need to thats one of the things that the people on this place understand!!

Keep communicating your real D is inside their listening although ED noise is trying to drown you out.

Even when our D moved out of home we kept the communication happening. Mostly it was my wife doing the communication with me doing it when needed.

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mjkz

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Reply with quote  #28 
Definitely not whining even if it feels that way.  Sounds like you are doing all the right things and will just have to wait out the silent treatment.  Has she said why she doesn't want to talk to you?  Is it just the family or is it everyone? 

Quote:
I know it's not the end of the world if it doesn't happen,but we would of course love to be able to bring her home, however briefly.


That might be a good topic for conversation.  How safe would you feel bringing her home if she isn't talking?  Maybe talking about what she would need to do to get home leave would be more concrete and touch her more than just everyday stuff or "normal" stuff that has no meaning to her while inpatient.
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Reply with quote  #29 
Caring for our children is very hard. I can see from you words that you are feeling heartbroken at the moment and are struggling to have hope. We all hit that wall sometimes. It is why we are here to let you know that it will not last for ever that she will continue to heal however slowly it happens. 

I think you are right about insisting on letting your D know every day that you care. My D also felt undeserving and pushed every one and every thing away when she was in the depths of despair. She will hear you even if at the moment she cannot acknowledge what you are doing. The other ray of hope there is that despite her current inability to eat there is continued nutrition going in and hopefully she is gaining weight. Prolonged weight restoration does help their brains to heal. 



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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.
Torie

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Reply with quote  #30 
Quote:
Originally Posted by Hebrides
My instinct tells me to continue sending her supportive messages, reminding her of our love for her, and our belief that things will get better etc etc and that to stop doing so would send the wrong message entirely ie that she is not worth communicating with and we are abandoning her. 


I'm sure you are right.

Your real d is in there somewhere, and she hears you.  I think it was PsychoMom who used to put little bouquets in her d's room - doesn't need to be anything fancy, but maybe that would give a bright spot for you both.

I think it's especially important to, as you say, keep expressing your belief that things will get better.  

You are a wise and strong mum (mom?), and your d is lucky to have you.

Hang in there. Things really will get better. xx

-Torie

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

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Reply with quote  #31 
Hebrides,
Virtual hug, Your D is in there, keep the communication. S did not speak to me most of his time in IP.
It is so gutting, but with the messages, she knows you are on her side....
UUGGH,
Please take care of yourself XXXX

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Hebrides

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Reply with quote  #32 
I hadn't realised it's so long since I was here - time flies when you're in the middle of a roller coaster!

In about an hour I will be setting off to the unit for D's MHA tribunal - if she wins, technically she has the right to discharge herself. She didn't get leave at Christmas (although we spent a happy day with her on the ward). Since then she continues to struggle with low mood, suicidal thoughts etc and to not communicate with us much (other than practical stuff). It seems she is talking to staff - though of course we don't know how honestly. On the positive front, she has worked so hard to get her obs level reduced, and to get ground leave (with staff and with me), and local leave with staff, and the unit have said they really want to keep her there and work with her. Since Christmas she has pretty much been taking all her diet orally (before it was all supplements).

On the negative front, I/we have had some truly awful visits and family sessions - silent treatment, curling up in a ball, shrinking away from any physical contact, sharp tongue, refusing to play games/do anything together etc. She continues to refuse any meds. And another absconsion on the first day back in education after the Christmas break - we were on our way to a family session, half an hour away, and I spent that time in bits (good thing H was driving), convinced she was heading for a bridge and that we would never see her again. Thankfully the police brought her back again, but she would not speak with us - no great surprise. There seems to be so much conflicting stuff going on for her - wanting her section overturned (so she can discharge herself) and yet absconding, for example. And while there is no doubting there have been positive steps, H and I cannot bring ourselves to rejoice at them and take them at face value. What if it is all a smoke screen? It wouldn't be the first time...

The psychiatrist reassures me that she thinks it extremely unlikely that the appeal will be upheld, given D's history, both recent and since she became unwell. But there's no denying my anxiety levels are pretty high, I have an almost constant headache, and muscle tension throughout my body. D has consistently refused to talk to us about the appeal - but she knows we know about it, and knows I am going. Not clear yet whether she will say she doesn't want me in the hearing... Assuming it does not go her way, I am almost even more anxious about her reaction afterwards - I guess if it's tempestuous, my best bet may be to beat a retreat to my hotel room and let the staff deal with it...

Hanging on - just about.

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Foodsupport_AUS

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Reply with quote  #33 
Thank you for your update. What a roller coaster! Keeping fingers and toes crossed that the tribunal sees sense.
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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.
mjkz

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Reply with quote  #34 
UGHHHHH!!!  Sorry.  Just had to do that.  I can only hope the tribunal sees what everyone else does.
Torie

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Reply with quote  #35 
Oh my, talk about stress!  Sure hope it went well - looking forward to the next update.

Thinking of you. xx

-Torie

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Sotired

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Reply with quote  #36 
Oh Hebrides-I remember all of this happening to us and the stress your mind and body go through.
I don't think she can ban you from the hearing as you are still her legal guardian and she is not yet 18?if she can im pretty certain that you can send a statement to be read in the court detailing what is happening from your point of view and what you feel would be best for your d.its finding ways around things sometimes and the problem is no one even gives us a hint usually of what we CAN do, only what we can't.
Even though there is struggle and pain still, I can see that your d seems to be making progress.to be eating and drinking, to let herself be saved when she ran again, and having the staff want to work with her is a huge plus.
Regarding what to do in bad visits-we learned as we went along that sometimes it was best to just turn and go,letting staff know as we went that the visit was getting cut short because that was for the best.we could travel for half an hour and then be returning home after less than five minutes.we would text that we loved her and that we would try to visit again in a few days.one time after several visits that had gone poorly I took my odd sock pile in and did that while she sulked.she had the option to help but she didn't want to,so she raged and sulked and I folded while her dad and brother rested.right at the end she came right and we played cards for a bit.but if I had just sat there I would never have coped-I had to have something to distract me from all the pain and anger being thrown at me.
There's nothing wrong with taking in some form of work if that's what it takes to get through the visit.when she was in hospital I would take in magazines with crossword puzzles.i would do those while she rested.again, if things got really bad, I would let the watch and nurses know and once she was safely under watch I would leave(and cry of course).during good visits we would go out with d in a wheelchair-just a walk together in the sunshine,or wind,or a few memorable times getting caught in the rain-but time away from other people's eyes made it a nice time,even if we were just wheeling around the hospital grounds.
I took meds myself during this time and an anti anxiety tablet as well.it didn't stop the night sweats or the body tension, but it helped me get through some bloody tough days.
I am sure the tribunal will go well.please look after yourself hon, that's very important.a cuppa and some crappy tv or a magazine or a book that doesn't need much attention....a quick massage to help with tension....a catch up with a supportive friend...a walk on the beach or round a lake...something that soothes your soul and eases tension.
Hope this helps,

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Reply with quote  #37 
Hi Hebrides , good to hear from you sorry it's still so hard. Taking the positives your d is eating now which is a big step. . How did appeal go. This is a horrible illness. Are you getting enough time for yourself as it is such a long road you needs lots of little breaks .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
toothfairy

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Reply with quote  #38 
Hebrides,
Hope you are ok x

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
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Reply with quote  #39 
Good luck Hebrides and often think of you since your response to me around Xmas time. My D did come home but it was a disaster and she has moved to an HDU and has been on 1:1 since. Food is getting better and there are NG feeds have stopped for the past couple of days. However after two weeks of grace my D is starting to kick up again with staff. It just seems never ending and I am guilty of feeling so so anxious every time there is a trough like this. I told her off last night which was unusual for me - I said that she can't be violent anymore and it is unfair on everybody and that she can't move hospitals again (which is what she is now looking for). I know that this is probably the wrong thing to do but she seems to have lost her boundaries. 

I'm sure they won't uphold your D's representations at her tribunal and you'll get the result that she so clearly needs. 


toothfairy

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Reply with quote  #40 
Hebrides, thinking of you often..
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Hebrides

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Reply with quote  #41 
Thank you all so much for your care, concern, advice and support. It means so much to me through these dark days/weeks/months/years...

So... the tribunal happened, and ruled that d's section should stay in place. Big relief - for us and all d's team. It was, of course, a pretty formal procedure, but the judge was very kind and spoke very gently to d. The thrust of all the reports and submissions was that d IS making progress in the right direction, and is working collaboratively with staff, so coming off the section now could jeopardise that process. The solicitor read out d's statement, which said something along the lines of "I know I'm not well and need more treatment and support, but would stay in hospital as an informal patient if discharged from my section". Yeah, right. I for one do not believe she would have done so, given the opportunity. Thank goodness she wasn't.

The bad reaction I was expecting didn't happen Friday or Saturday - she was ok with me, and pretty bright all round. Strange... but then it kicked in 2 days later and things have been awful (again) since. Extreme low mood, expressing suicidal thoughts/intent, tying ligatures several times a day... Staff were keen to keep her off 1-1 obs if at all possible, given she had only recently worked so hard to get off them, but had no choice this last weekend and had to reinstate them. Everything -clothes, wires etc is locked away again, and this time she has no bedding on her bed - because she tried to tie the sheet around her neck... It is heartbreaking (again) and I am (again) very anxious that the unit will feel they cannot manage her. I will be there tomorrow so will try to talk with psychiatrist if she is free. One positive - d has agreed to try a different antidepressant (she has refused any meds point blank since mid Nov), has agreed to a low dose of Diazapam daily (for the short term) and is accepting, and sometimes asking for, promethazine prn. And through all this turmoil, she is still taking all her diet orally.

It was her older sister's 21st birthday at the weekend, and we know d had told staff she felt so guilty for ruining the day (as she also feels about ruining Christmas) - I so wish she could hear us when we tell her nothing is ruined, that all we want for those special times is to be together, which is what we did (we fetched older d from uni for the afternoon - thankfully it's only 45 minutes away).

I am trying to look after myself - h is away all week so I have planned to meet friends a couple of times and managed a couple of hours in the garden this afternoon. I do still feel utterly exhausted, almost paralysed, all the time, and am trying not to beat myself up for not being able to rattle through jobs etc like I used to, but it's not easy. As you all know...

On the advice of the psychiatrist, h and I have just planned a few nights' away (Florence![biggrin]) in a couple of weeks - since we were unable to celebrate our silver wedding and my 50th back in the autumn. Am going to have to work REALLY hard not to worry about d while we're away....

Hoping beyond hope that d turns even a tiny tiny corner soon...

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
toothfairy

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Reply with quote  #42 
Oh Hebrides,
OMG, Gutted for you.
Horrific, just Horrific.

I am hoping so hard for you that the meds kick in and she turns a corner.
Hopefully the low dose meds kick in soon.

Could they not have enforced the meds since Nov, given she is 17? 

I really hope somebody/something can help her soon.
Thinking of you, keep going and look forward to Florence to re-charge.
Belated Happy Birthday.. XXOO

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
mjkz

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Reply with quote  #43 
Relief!!!  Glad they kept the section and it does sound like she is making progress although she took a step back.  Remember it is truly one step forward and then one back. When you deal with it everyday, you don't see the progress as easily as you can from a far but some good things:
-Meds!!
-Still eating!!
-Working with the staff.
-Acknowledged know she was unwell even if just to sound good.
-Asking for prns-huge!!

Tell her nothing but fun stuff about the birthday and that you missed her but you know she will be there next year-that you have faith in her ability to get herself out of this and back into life which is waiting for her out there.
Izzo

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Reply with quote  #44 
Hello Hebrides. 

Glad to hear that the section was kept. I agree with mjkz that she is making progress although I know where you are at with the ligature tying - it's just so upsetting to hear it. Small steps all the way. With a D in a similar position/mental state I constantly have to remind myself of the progression even though the line is extremely bumpy. It's fantastic that your D is still eating through all of this and agreed to try a new medication.

Just to add that since my D moved to a new unit there is no choice about taking medication - i.e. that if she doesn't take it voluntarily she will have to have it down a tube. I think they need a second opinion to do that but it has happened and I hope the meds will kick in. I think it's a section 16 but don't quote me on that. 
Hebrides

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Reply with quote  #45 
Thank you, mjkz and Izzo, for reminding me of the positives - it gets so hard to see them in the midst of everything else. Thank you too, TF, for being there.

So I did talk with the psychiatrist yesterday, and it was the conversation I was dreading. She feels they are not giving d the help she needs and wants to explore transfer to a general psych ward that may be better able to treat the depression/self-harm and explore the suggestions of ASD and BPD (though with the caveat of still being in the grip of AN...) The psychiatrist knows and we know things need to happen differently from last year, when d had a month in a general unit to treat her depression/SH after 8 months in an ED unit, but it ended up being a step down to home and involved no treatment at all - and we were rewarded with full-blown relapse after 24 hours. 

Although she didn't speak, d was visibly upset at this news, and very cross with me afterwards - she did say "this is where I need to be" but also said "i'm fine" when I reminded her that attempting to tie ligatures constantly was a massive concern and definitely not "fine". Then she told me I had no idea what it's like (true, I can only guess) and stormed out of her room. 

It's clear nothing will happen too quickly, and the psychiatrist told her they will continue to support her and work with her, and that this plan is not set in stone - if d can begin to make some commitment to change... I just don't know if she can, and if we keep telling her she has the power to halt this process and stay where she is, is that going to heap pressure on her and then make her feel even more of a failure if she can't manage it? So hard knowing how to get the right measure of compassion and understanding for where she's at in combination with trying to encourage her to stand up to her illness and do the right thing for her recovery...and all this made so much harder by her refusal to talk to me about any of this.

Not sure I'm looking forward to my weekend visit this week...

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #46 
Quote:
I just don't know if she can, and if we keep telling her she has the power to halt this process and stay where she is, is that going to heap pressure on her and then make her feel even more of a failure if she can't manage it?


Hebrides I'm a firm believer in calling a spade a spade and being very upfront with my daughter.  When we have been in similar places, I have been very honest with her about the fact that she is the only one that can change her future course and that she doesn't have to be perfect but demonstrate willingness to change and curb her behavior.  She might not be able to fight the urge to try to tie a ligature around her neck but that is when the emotion peaks in intensity.  There is a lead up to that and she is more than capable of going to staff and asking for help before it hits that peak.  Same with cutting and purging.  I never tell her "I told you so" after if she is truly not able to do what she needs to do but I also don't let her try to blame someone else.  I'll tell her that it was her behavior that got her transferred and now we have to work with where we are.

If she thinks she needs to be where she is, then maybe talk to her about what she can do to help fight the urges and use the support she has with the staff to fight the urges.  As for you having no idea-that goes both ways.  My daughter pulled that card out often and my reply was she didn't know what it was like from my side either and not talking to me or working with me just made that harder.

She got off 1:1 before so she can do this.  It would be a shame for her to have to move to a unit that might not be able to treat the eating disorder.
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Reply with quote  #47 
Hebrides, my daughter is at a unit that specializes in both the SH behaviours and suicide ideation AND treating the eating disorder. However I am based in London. Would this be too far for you? Since she has moved to this unit it is the first time that I can feel that my D is in safe hands. 
Hebrides

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Reply with quote  #48 
Dear Izzo - I'm so glad your d seems to be in a place that really has the potential to help her. You have been through so much already you and she deserve to have a good team to work with. Our d's sound like they are on quite similar journeys...

We are up in Yorkshire, so London probably isn't a viable option - which unit is she in? I could at least look at their website...

I'm about to set off to be with d for the weekend and am just hoping we can have some time where she is able to be calmer so we have the chance to talk a bit.

Wishing you as good a weekend as it can be too.

Hang in there - you're doing an amazing job.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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Reply with quote  #49 
Hebrides, good luck this weekend, thinking of you.
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
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Reply with quote  #50 
Hebrides,
How are you doing?

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
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