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howdidwegethere

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Hi there This is my first post. My daughter (17) was diagnosed with AN 3-4 months ago. She is currently being seen at the Young people’s ED clinic at the Maudsley in SE London. Despite raising concerns a year before, it took a very long time for us to get care with much derailing by health professionals along the way. She anow has osteoporosis which we have been told will not improve even if she recovers. The care at the Maudsley is good but unfortunately the disease is now entrenched and she is not engaging with treatment. She has refused family therapy, meal plans and intensive day programme. We are waiting for a bed in an in-patient unit and have been advised the wait will be 10 weeks. We have been living with this for 18 months now and I have stayed strong during all of this time but I reallly don’t feel I can take any more. I know when we go in for the weekly session on Tuesday that she will have lost more weight and I won’t be able to bring her home another time and watch her waste away anymore 
I would appreciate advice about how to manage during this ‘limbo’ period as my daughter continues to lose weight and her health continues to deteriorate. The unit she will most likely be admitted to is Wisteria Ward at St George’s Hospital / Springfield site, I wonder if anyone has any experience of this centre? If so, how was it? How can we make sure our daughter gets the best out of this admission? 
WE have also been advised that in 4-5 months time when she is 18y she will have to ‘transition ‘ to an adult inpatient unit. I would appreciate advice also in how we can manage transition process and make sure it all works as well as possible for our daughter. 
Final question (so many questions) - I think she is on on-line anorexic forums as she is always a few steps ahead of us. How harmful are these sites? Any advice (Idon’t think we would be able to block them/remove phone and laptop at this stage)? I look forward to your kind replies
Torie

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Reply with quote  #2 
Hello and welcome.  I'm really sorry you needed to join us here.

In your shoes, I'd pretty much beat down the door to try to get that 10-week wait reduced.  I'm on the other side of the pond, though, so I will leave it to others in your neck of the woods to discuss dealing with treatment providers.

I wonder if you have seen the fabulous video by forum member Eva Musby. It was a huge help to me, so I'll post a copy of it at the bottom of this post.

If you are paying for your d's phone, you have every right (and responsibility) to make sure she isn't on sites that are dangerous for her.  As they say, parenting is not for cowards and nowhere is this more true than when dealing with AN. 

Please feel free to ask all the questions you like.  We're glad you found us. xx



-Torie 

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Kali

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Reply with quote  #3 
Hi Howdidwegetthere,

I'm sorry you have to find yourself here but hope the experience of other parents who have walked in your shoes can bring you some comfort and give you some practical ideas about how best to help your daughter

My daughter was also 17 when diagnosed. Today she is 20 and doing very well.

How did we get there?

3 months of residential treatment and then 3 months of day treatment, and then outpatient treatment ever since. And a lot of blood sweat and tears on the part of her family and supportive friends. Was she resistant? Yes. Was she suicidal? Yes.

I remember being where you are now, waiting to have her admitted, when things were at their very worst.

My only goals at that point were to keep her from hurting herself (not successfully) and to get as much food into her as possible (not very successful due to purging and over exercising). We were down to about 400 calories a day right before she went in and that was with me trying my hardest to get her to eat. My goal was to keep her from losing any more weight and I was able to do that.

She did seem to understand on some level that she needed help even though, that this was no way to live so I was able to tap into that to get her to go into treatment. I had taken her out of university and it bothered her that she had had to leave, and I was also able to tap into that to get her to buy into treatment. After 3 months of supervised meals and weight restoration in residential, she never refused to eat in front of me again. At that point I was able to make sure that 3 meals and two snacks a day were being eaten. And after that happening for a long time, she is now back at university again and feeding herself, has friends, and is again able to do well with her studies and her job.

So I would say: try as hard as you can to have 3 structured meals and 2 snacks a day while you are waiting for her to go in. Try to increase the portions she is eating or add more high calorie ingredients to her food. Olive oil, rapeseed oil, cream, are your friends. What are her "safe" foods now? Serve those for the time being and increase the portion sizes and add some of the high calorie items. There is a product called benecalorie which is a tasteless colorless additive which has 350 calories in a very small footprint which can be added to sauces, soups, etc, to bring up calories. Try to keep her out of the kitchen while you are preparing her food.

As far as her computer are you able to get into her computer when she isn't home and see exactly where she is visiting since you think that she may be on some sites which are not appropriate?

If you let us know how mealtimes are in your house right now, other parents can hop on and let you know how they handled it also.

I have heard, anecdotally on the board, that there are some sufferers who were able to bring their bone density up after being refed and maintaining a better weight. My understanding although I'm not a medical professional is that  bones are still filling out and growing until about 20 years of age, so you have time to try and improve her bone health.

warmly,

Kali


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Foodsupport_AUS

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Reply with quote  #4 
Welcome to the forum. Sorry that you have had to find your way here. I am sure you are so frustrated that precious time was wasted in getting your D a diagnosis all the while she could have been treated. 

There is good evidence that the best treatment for adolescents first off is FBT. In the UK I think it is called FT-AN. It does not sound as though this is what you are being offered. This would charge you with the need to refeed your daughter rather than leaving her in charge of her illness. As much as I would agree with trying to shorten that 10 week wait it is worth looking at what you can do to help yourself. Perhaps she doesn't need that admission. There are some resources in our Learning Center about refeeding and this document from Australia http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf is fantastic. The beauty of FBT as a treatment is that your D does not actually need to engage with treatment at all at the start. She initially just needs to eat. 

As for on-line forums - they are a big issue. They tend to "normalise" ED thoughts and behaviours. I would restrict access to them as much as is feasible. This could involve blocking sites on home internet, and also potentially removing phones from use if needs be. 



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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.
tina72

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Reply with quote  #5 
Hi and welcome in this forum nobody wants to be member of,

"She has refused family therapy, meal plans and intensive day programme."

As she is not legally adult, who gives her the right to refuse that? Is that the case in your country that a non adult coud starve herself to death and there is no parental authority? My d was 17 when diagnosed, too, and we had the right to require treatment and to require FBT from her.

Did you try FBT at home with a meal plan or did you ask her wether she wants to do that? She will not want any therapy in this state. Never. You have to decide that for her.



"I think she is on on-line anorexic forums as she is always a few steps ahead of us. How harmful are these sites? Any advice (Idon’t think we would be able to block them/remove phone and laptop at this stage)?"

These sites are very harmful and dangerous and I would stop that asap. You say you cannot remove phone or laptop. Why? What about cutting internet access? That would allow her to phone someone but not visit these sites. If that is not possible with her phone, give her a simple cellphone which can only do phone calls. You are in charge for that. If she would visit dangerous sex sites or chat with some drug dealers I think you will cut the phone.



We always think we cannot do that with a "nearly" adult. Is she behaving like an adult? No. She is sick. She cannot think in a normal way. Parenting an AN child is no normal parenting. You pay for phone and internet. You set the rules. If she can not use it for good, then you need to cut it.

You have some power left. Use it BEFORE she is 18. Your time runs away...



Tina72
Foodsupport_AUS

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Reply with quote  #6 
With regards to her bone density, it is imperative that she is weight restored, and has normal periods as soon as possible. Although she may have lower bone density than her peers, this does not mean she cannot increase her bone density nor does it mean she will always be classified as osteoporotic. The key factor is weight gain. This article explains some of this https://academic.oup.com/ajcn/article/86/1/92/4633077



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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.
howdidwegethere

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Reply with quote  #7 
Thank you all for taking the tIme to reply.
I found this forum as I am reading Eva Musby’s book.
I think those of you in America (and elsewhere) may not realise that in the UK, people give there own consent for treatment at 16 not 18 years old. This is one of the reasons it took so long to get her into any level of care- we kept being told she had to agree to a referral but no one gave us any advice as to how to support her to come, it was just made clear to her by all involved, including adolescent mental health practitioners, that it was completely her decision. Health professionals (a GP & a gynaecologist) told me that a 16 year old not having periods for 8 and 12 months respectively was ‘normal’.
A private psychologist kept trying to persuade me that my daughter’s social anxiety around eating etc was due to Asperger ‘s syndrome.
Also when I say she refused family therapy and meal plans, I mean that she said if she had to follow them she would refuse to eat at all. She only eats in her room - I have some idea of how much by what leaves the kitchen. I used to weight boxes etc to see how much was gone and try to add up but have stopped that now as really it felt like I was behaving a bit like her and it wasn’t really helping me.

Shockingly, in the UK, individual autonomy trumps all else even in the field of mental health for young people.
I feel so let down, hopeless and helpless but need to concentrate all energy on trying to get her the care she needs.
Foodsupport_AUS

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Reply with quote  #8 
In Australia there are similar rules for consent as in the UK. Here you can give consent to treatment at ANY age, and if someone is competent they can also refuse to consent to treatment as a minor. The current rules in the UK are these https://www.gmc-uk.org/guidance/ethical_guidance/children_guidance_30_33_refuse_treatment.asp

Even within these guidelines though it is important to recognise that a minor is still a minor - as parents we supply all sorts of things for our children, and we have the right to manage those things as we see fit. So it is tricky when they first become ill at this age and say they won't go to treatment however we do have coercive powers as parents and we are allowed to use them. It is along the same lines as how we manage teenage sex, drug use, smoking and school. They don't necessary agree to what we think should happen, however we are not without influence either. We get to set boundaries and to decide what we think is appropriate behaviour. 

I am sure that someone putting to your daughter that she can refuse treatment has not helped in this regards. The idea that although she has no control over her illness she can not have treatment that she finds challenging makes things even harder. You still have some choices though, and can definitely influence her in terms of out come and what is going to happen. Motivational interviewing skills come to the fore here - https://www.amazon.com/Skills-based-Learning-Caring-Eating-Disorder/dp/0415431581  Set clear boundaries and consequences for what you expect to happen. 

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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.
Kali

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Reply with quote  #9 
Hi Howdidwegetthere,

My d. was diagnosed at 17 and is now 20. Yes, on paper she is/was allowed to exclude us from her treatment and she did try to do just that at one point, but I made it clear that the boundaries were firm that I was responsible for helping to keep her safe until such a time as she could do it herself, and if I had to I would drag her kicking and screaming into recovery and she was stuck with me and my opinions on that were never going to change and that we required all papers to be signed so that we could communicate with her team as necessary. We have leverage because we are her parents and you do also.

No system in any country seems to be perfect for ED treatment, and it is unfortunate. In the UK however someone can be sectioned if they are deemed a danger to themselves. Here in the US they can be held for only 72 hours and evaluated if they are suicidal and often they are released after that.

Quote:
Also when I say she refused family therapy and meal plans, I mean that she said if she had to follow them she would refuse to eat at all. She only eats in her room - I have some idea of how much by what leaves the kitchen. I used to weight boxes etc to see how much was gone and try to add up but have stopped that now as really it felt like I was behaving a bit like her and it wasn’t really helping me. 


Ok so in this situation. You will need to be very calm, compassionate and firm with boundaries. You could try this: you don't share info about a meal plan with her. You could try making one yourself containing enough calories and food groups. Do serve 3 meals a day and at least 2 snacks and bring up the amount of calories she is consuming. She needs to stop eating in her room and come down to the dinner table. She may be doing this because she is very uncomfortable and becomes anxious eating in front of other people, that can be one of the symptoms of the disorder and that will need to be addressed. So when you serve meals, make sure they have enough calories. Serve yourself the same portions and foods and sit and eat with her. Don't stare at her plate but make conversation and use distraction. Calm music playing in the background, make the table feel special with some flowers or a nice plant. Talk about some fun plans for activities you can do together for example. Do your best to make the food look really attractive and taste yummy. Make interesting conversation not talking about food or anything unpleasant. Is she still attending school? Some parents have found that they required food to go in for breakfast before they would let their kids go to school, and then met them for lunch and made sure they ate. 

Can you get in touch with her team at the Maudsely and work out a situation where you can bring her to A & E if she refuses to eat and they can be called? Usually here drs have admitting privileges to hospitals and can be kept in the loop by the ER but I'm not sure how it is in the UK but you could find out from them how best to handle any food refusal for 24 hours.

I found that when my d. did not eat for most of a day and I promised to take her to the ER, that was able to help motivate her to eat and I never actually had to follow through on that promise. There is an ER near us which has an ED unit in the same hospital so I would have taken her there and asked that the ED dr. who we had seen before be notified. Since she had been there for an evaluation once and hated them, that was enough to keep her eating.

As they say, "Fake it until you make it".

warmly, 

Kali

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yellowcaty

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Reply with quote  #10 

Hi howdidwegetthere

We are in the uk and my daughter is waiting for a hospital bed. She did have to give consent, but fortunately nobody gave her the impression that she could do otherwise. This wasn’t to deceive her, she was just told how ill she was and how much worse it could get without help. It is just a shame that your daughter is aware that she can refuse. My daughter’s doctor did make it clear that if she refused treatment in hospital or tried to discharge herself then they could section her, if they deemed her to be in danger.

Sending you lots of love and support. I haven’t got much advice as we are still in the middle of this horrendous struggle, but I just wanted to let you know that you are not alone.

Yellowcaty
howdidwegethere

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Reply with quote  #11 
Hi there
Thank you all for the advice,
Saturday night I had hit rock bottom and decided that if she has lost more weight this week I won’t be able to bring her home - just can’t watch her waste away any more.

Yesterday, D told us that she would like to be given the opportunity to try the intensive day programme on which she had previously refused a place. We think this is positive (said she didn’t want to become ‘institutionalised’) but worried that is could also delay treatment as may lose the waiting list place for inpatient care. Husband also suggests could be another delaying tactic and he might be right).

I said I would e-mail the therapist prior to our 4pm appointment tomorrow so she could discuss with the team. She didn’t want me to do that - always wants to do it herself, be in total control. Even if she goes to the day programme, she still won’t let us do any meals etc at home. She says she will do it herself but has had four months of this without any success, just more weight loss. I have done the e-mail.

My husband and I have put a plan together to present at the appointment tomorrow. It feels risky but not sure what else to do as we are desperate . We are going to say that if she doesn’t let us support her as advised by professionals, we are not best carers for her right now and She can’t live at home anymore unless she is prepared to accept out support and live by our rules. These will be all the things she has rejected up to now - supervised eating, meal plans , respect for other household members etc and also trying to block the anorexia forums. If she doesn’t agree I will have to go through with it which will be devastating.

Would really appreciate advice on blocking the sites as we are not at all technical. We will need to get an IT person to do it.
Any advice. We’d also really like to know the names of these sites - I am only aware of one ‘my pro ana’. If you know of any others please let us know. Also how to get professional IT person to help block sites.

silvermoon

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Reply with quote  #12 
Hi, quick reply re blocking sites. It might be easiest to check the search history from laptop, jot down the website addresses and telephone your internet provider and ask them to block them. We are with Sky and managed to do this through their shield service on their website, through our account settings. We blocked the most common ones.

Do you have any technical friends to ask
To help you?

Wishing you well, it's a tough journey, grateful to have found this forum to feel less alone on the long days.
Torie

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Reply with quote  #13 
Quote:
Originally Posted by howdidwegethere
My husband and I have put a plan together to present at the appointment tomorrow. It feels risky but not sure what else to do as we are desperate . We are going to say that if she doesn’t let us support her as advised by professionals, we are not best carers for her right now and She can’t live at home anymore unless she is prepared to accept out support and live by our rules. These will be all the things she has rejected up to now - supervised eating, meal plans , respect for other household members etc and also trying to block the anorexia forums. If she doesn’t agree I will have to go through with it which will be devastating. 


I'm so glad to read this!  Even after she is back home after treatment, she will still need your firm support and resolve to keep eating so it is essential that you take a firm grasp of the reins and require her to accompany you on this journey back to health.  Good for you!

I highlighted the "as advised by professionals" because it is entirely possible that the "professionals" will undermine you, as has happened to so many here (raises hand).  I think it is best to make it clear that YOU are in charge and that, while you respect and consider the advice of the professionals, the decisions are made by YOU - the person who knows her best, loves her most, and has to do the lion's share of the heavy lifting.

I wonder what you mean by "respect for other household members."  Honestly, if she eats what you require, doesn't purge (exercise, vomit, etc.), and refrains from violence (to self or others), I'm not sure if it is realistic to expect anything more than that.   Her brain just isn't working properly right now, and eating more will only make ED more frantic.

Finally, I want to say I agree with everything Kali said EXCEPT that I would not necessarily require my d to come to the table.  I think it might have been Colleen who said she would have eaten on the roof if that's what it took.  She does need to eat WITH YOU, but to me, the location is flexible.

So sorry you are faced with these horrible dilemmas!  You're doing right by your girl, though, to put you foot down and require that ED get the heck out of your house.  Your d just isn't strong enough to do that herself.

Stay strong!  xx

-Torie

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tina72

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Reply with quote  #14 
"respect for other household members"
That is something which comes automatically with WR again. We did not hear any thank you or please for a long time but suddenly it was there again.
ED damages the part of the brain which is for empathy. They seem to see only themselves. Empathy for the others is something against ED and so it is locked out. But you will see it again if her brain is working well.
Tina72
tina72

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Reply with quote  #15 
Block websites:
That is easy with windows hosts. You only need the name of the site you want to block and it is led to another IP adress then which is an empty one.
You can do that on pc and cellphone.

https://gadgets.ndtv.com/internet/features/how-to-block-any-website-on-your-computer-phone-or-network-588357
or
https://www.pcworld.com/article/249077/web-apps/how-to-block-websites.html
or
https://www.wikihow.com/Block-a-Specific-Website-Without-Software

Auf Deutsch:

https://praxistipps.chip.de/windows-einzelne-webseiten-sperren-so-gehts_27111

https://de.ccm.net/faq/10857-zugriff-auf-bestimmte-webseiten-blockieren

I don´t know by now how to block bad contacts on Whatsapp. Any advice welcome (although not needed at my house at the moment [wink]).

We did not need to do that because my d left pro-ana websides when we asked her to do that. So I don´t know all of them.
Maybe we could open a new threat and collect them? But could be triggering and a list for patients use although...difficult topic.

Tina72

howdidwegethere

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Reply with quote  #16 
Thanks to all of you for your kind advice,
We instituted the plan and D is now eating downstairs, all meals on the ‘restoring regular eating plan’ approximately 1400 calories. Went badly to start with but I took laptop and phone and slept in her room for a night. The mantra is if I can’t keep her safe, she can’t be at home.

Went well for three days - This is progress - not in her room and eating what is put in front of her. Gave phone back but not laptop. We are watching the Commonwealth Games (not sure about that as sport obviously but therapist said ‘give and take’).

Wobble today - seems very tired and in bad form- I expect having to fight the anorexia is exhausting.
Wouldn’t eat yoghurt. I have taken phone again, won’t give back before tomorrow. Threatened with A&E and gave time period to eat it and she did it. I was thinking I would sleep in her room again tonight -would that be too punitive? I am worried about her mood today so it is concern more than punishment.

I don’t know where this is all going but do feel we did the right thing making the stand so thank you all so much.

We are still struggling with the blocking of the websites. We had hoped it would be possible to give our internet provider some key words and ask them to block on that basis. They will only block sites that we give them the names for. I anyone has any names of any sites, we’d appreciate it. I understand it is impossible to block all as there are so many and new ones popping up all the time,

Thanks again for help so far


tina72

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Reply with quote  #17 
Hi,
great progress that she is eating downstairs and that she eats what you put in front of her! And great that you made her eat that yoghurt although she refused it first!
If you are concerned, sleep with her. I do not see that as punishment and inside your d will be glad for that because you keep her away from AN that way.
You are doing the right thing. Keep on swimming. Increase intake, close loopholes. She will get better soon. It needs time.

Did you try to block the websites you know with windows hosts?
Did you check the pc history to see which sites she has visited?

I think we should not collect names of websites here because that might trigger patients lurking around here and might function as some advertisement for these sites and that will be the last thing we want.
So if anyone has ideas which websites howdidwegethere should block, please write a privat email.

Tina72
howdidwegethere

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Reply with quote  #18 
Thank you so much Tina.
We can’t get into PC as we don’t have the password.
I’m sorry - I am new to all of this - didn’t cross my mind that it would be a bad idea to get the list in open forum - you are obviously right.
Hopefully some people will send me the private e-mails.
Foodsupport_AUS

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Reply with quote  #19 
Well done on making some steps forward. 
I was not quite clear - with the yoghurt - did she eat it in the end or continue to refuse? If she ate it, I would suggest that she get her phone back - life stops until you eat, can also be life starts when you eat. It is very important when trying to get her to eat that there is not a punishment component, rather the goal is to use whatever it takes to get her to overcome her anxiety and eat the food that her body needs. 

The same goes for sleeping with her, it is never a punishment, it is about protecting her from herself. 

I have sent you an email. 

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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.
tina72

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Reply with quote  #20 
Quote:
Originally Posted by howdidwegethere
Thank you so much Tina. We can’t get into PC as we don’t have the password. I’m sorry - I am new to all of this - didn’t cross my mind that it would be a bad idea to get the list in open forum - you are obviously right. Hopefully some people will send me the private e-mails.



If she has Windows 7 or 10 on her PC you can start it without password.





https://www.techadvisor.co.uk/how-to/windows/how-access-laptop-without-password-3662274/

https://www.nytimes.com/2016/02/16/technology/personaltech/starting-windows-10-without-a-password.html

https://www.isumsoft.com/computer/how-to-unlock-a-locked-computer-without-password.html

Hope some of that helps.
Tina72

Torie

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Reply with quote  #21 
Wow, Tina, didn't know you provide such good tech support on top of everything else! xx

-Torie

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tina72

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Reply with quote  #22 
Thanks, Torie, I hope it works, I didn´t need to try it myself.
As hubby has technically two left hands I am the pc nerd here in the house. A very basic pc nerd. I learned everything through Youtube and thats why I looked there to solve that problem. I most cases that works.
Tina72
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