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trusttheprocessUSA

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Reply with quote  #126 
So I have to be honest. I have paralyzing PTSD and it makes me extremely sensitive. I have been avoiding coming back to ATDT for support because my anxiety has risen when I read some of the opinions. I usually update because I notice how many care givers are checking in on this thread. I don't want to disappear. It no ones fault this is the most terrifying disorder and we are all scared. 

I need experienced wisdom not opinion at this point. If you haven't dealt with a YA trying to learn how to become independent and feed themselves after slip please refrain from giving me advice. I know how scary this is I am on the front lines. IT IS TERRIFYING - my therapist and the therapist at UCSD says its nerve wracking, HA!

So I have: our ED Doc helping to guide me, my ED therapist in Portland, our FBT therapist here at home, a highly trusted recovered person, and a mom from UCSD who is an advocate. I in contact with UCSD for their T-Fam program for kids transitioning to adulthood from FBT. They all know that a YA craves independence and must acquire the tools to become independent and take care of themselves. My son has had most of his food made for him by me. He is learning how to make his own meals and choices. The situations, beach week, orientation, and tomorrows trip to the beach with friends is an experiment to see if he can feed himself. If we don't try this how will he learn? I am his safety net, his first responder, his savoir - now he needs an opportunity to prove he can do this for himself - he is motivated and willing. He is weight restored and eating well. The idea is for him to choose his life over ED - 

Believe me - I would have never considered this on my own. But if I try to keep him under my control he will not put up with it for long and then where will I be - If he fails we'll catch him, if he needs a high lever of care well get it. This feels harder than the first time. 


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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
melstevUK

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Reply with quote  #127 
ttp,

I can understand how you feel overwhelmed.


But you have said something that is a bit of a contradiction in terms of your worries.   If he eats things like pizza and fries and cheesburgers - wow, just encourage him to to this!  The traditional image of 'junk food' is focused on the idea of it not being 'healthy'.  But in terms of your s's recovery - if he can go along with eating all the fast foods that other students may eat (because in general they are cheap) then encourage him to do this!  These foods are generally not considered healthy because they are high in calories - but your s really needs this!

It's understandable why you feel so hyper-anxious around what is happening and the decisions you have to make.

Right now, looking at the 'bigger picture' - your s seems to be eating pretty well, he is only an hour away from you  (very easy for you to keep an eye on him), you can encourage him to eat with friends he makes (likely to be cheap fast foods - yay to that), he absolutely did not want to get into the drink and drugs scene during the beach week.

In my opinion you have an s who has an idea of how he wants his future to be, he can start studies away from home and you are close enough to be able to assess how he is getting on, and he has a wise enough head on his shoulder not to go off the rails.

Let him go and monitor.  My d went away to study at a much lower weight than your s, she had to have a hospitalistation during her studies, but she had an idea of a future she wanted to get to.  If your s has an idea of what he wants his future to be - encourage him and support him and step in if the ed gets in his way again.  You are all going to be all right.

Hugs. x 

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mjkz

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Reply with quote  #128 
Quote:
I need experienced wisdom not opinion at this point.


All you can get on here is experienced wisdom.  The people posting in your thread are people who either have dealt with or are currently dealing with exactly what you are trying to deal with.  I would say we all have varying degrees of PTSD from dealing with the trauma of it all.  If you are looking for people to just say yes to everything and not give experience or warnings about things to look out for, you are in the wrong spot.  That's what you have professionals for (I'd love to say just kidding but some professionals are like that).   You came back here for a reason.

Every single slip up they have and helping get them back on track you will find exactly the same struggle:  How to help your loved one while at the same time maintaining their independence.  That starts in adolescence and continues through their entire lives and is especially important in kids who struggle with eating disorders.  It is hard to hear that your kid is not "normal" and may not be in the same place as his/her friends because of the struggle with an eating disorder.  It does stunt their growth in certain areas as you have seen with this relapse.  I personally have found that a lot of professionals don't get that.  Then again they are not there to see your kid regress while refeeding.

If we aren't giving you what you need, maybe you need to take time away.  Most of us have found we have to slow things down for our kids that have suffered with an eating disorder and not do things "normally".  My daughter like Mel's was at a much lower weight when she headed off to college and she was successful in college but got really sick doing it.  She was not ready to head off at 18 like other kids but live and learn.  I wish I had found this place before then so I could have better prepared her or had her stay home longer.  Anyway you have a team in place and in the end you have to be the one that chooses.  None of us have a personal stake in what you end up doing.  Anything we offer is because we care and hope to see both you and your son (and your entire family) not only survive this but thrive.
Torie

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Reply with quote  #129 
Hi TTP - Sorry you are faced with such tough decisions.  Ugh.  Whatever you decide, I know you will keep a good eye on your son
and be there to support him.

I just wanted to ask if you have looked into tuition insurance.  I'm trying to sort it though, myself, just now.   Let me know if you want to compare notes on that.

Thinking of you.  xx

-Torie

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Foodsupport_AUS

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Reply with quote  #130 
Sorry that PTSD is creating such anxiety for you with your son. I think those of us who have been around for a while know that we seem to live in a perpetual world of hyper alertness and fear. We can only offer what we have learned from our parts of this journey. Each of us of course have a different take, some have found that rapid weight restoration and maintenance worked for them, others have tried multiple options without success. 

What I can offer as the parent of a now nearly 21 year old is that our ability to control their lives gradually wains the older they get. If they are going to grow up and be independent we need to at least let them try in order to fail. We can hope there won't be relapses or slips or trips but the nature of this illness means there probably will be. Us learning to deal with these and learning how to intervene while offering age appropriate care is really important. We can't treat them as though they are 12, nor do I think we should, even though sometimes their development is somewhat lopsided. 

Your son learned a lot  while away at beach week. My D missed so much of her teen years that when she started at university I worried about her ability to cope with exposure to sex, drugs, alcohol, relationships. Things she had little experience of as she missed out on all that normal teen development stuff. I found that suggesting small steps has helped me and my fears as much as it has hers. She knows that I am there to fight with her as long as she needs it. As it turns out after 2.5 years at university she is coping well, making friends, managing to reach her goals. 

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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.
atdt31_US

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Reply with quote  #131 
Quote:
Originally Posted by trusttheprocessUSA

I talked about us more openly discussing his ED and how to manage it like type 1 diabetes. I talked about when he needs to be re-fed it is dis-regulating and causes upset and weird behaviors not his fault but that's the way it is and sometimes it takes a long time to regain the lost weight - longer than he might think.   He genuinely seemed in agreement with that.



I love this -- I have been inching toward this type of approach the older my d gets, but had never thought of it in these concrete terms.  Managing it like Type I Diabetes -- good way of looking at it and putting it on a level the kids can maybe understand a bit too.

Also, just wanted to wish you well!  Totally feel your PTSD and fear for your s.  No advice, just well wishes and virtual support!


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Mom of either pre-diagnosis or non-ed underweight 11 yoa kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006.
Kali

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Reply with quote  #132 
Hi TTP,

I understand your anxiety well since I am the parent of a college age d. 

Every time we send her off I experience anxiety, however, staying in touch, frequently visiting, encouraging her to remain in treatment AND trying to do some nice things for myself have helped both to keep her safe and keep my anxiety down. 

I hope you can find a good balance for you and your son in this next stage of his life.

Best wishes,

Kali



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trusttheprocessUSA

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Reply with quote  #133 
thank you !
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
Torie

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Reply with quote  #134 
Thinking of you, TTP.  Hope things are going OK.  xx

-Torie

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

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Reply with quote  #135 
Hi TTP,

I can totally relate to all the emotions you are going through right now!  The PTSD this damn illness leaves for the caregiver can be so paralyzing.  My D also had a blip during prom season her senior year of high school.  We had started with a new therapist that winter and were leaving all decisions up to her.  She told our D that she would give her recommendation as to whether or not she should go away to college in July and we agreed to abide by her decision.  After the prom blip, my D worked really hard to get back to where she needed to be to go away and the T said we should let her go.  For background info, the away school is about 3 hours from home and she was also accepted at a local college as a back-up plan. 

My H and I felt fairly confident that she was in a good recovery but we also know how quickly things can go south!  The T said that we should allow D to go away but to have safeguards in place -- we visited her almost every other weekend and we got tuition insurance.  Our D knew that we would bring her home if she started to struggle or lose weight.  I guess what I had to come to realize is that with this illness the person can always have a chance of relapse, after one month, one year, 5 years -etc, you just don't know IF or when.  We had to let our D leave the nest to see if she could do it.  I am not saying it was easy for me and I am sure many folks on here would have recommended she stay local for a semester or two.  I am happy to say my D did so well at school but I was a total mess back home.  I would log onto her financial acct through the school and look at what she charged for food every single day.  I could not see what she ate but I could see where she ate, the time of day and how much she spent.  I was so paralyzed with PTSD and the thought of having to go through it again kept me awake most nights.  My D thrived at school and I was a mess back home the entire year.  Her sophomore year I was much for relaxed.  She will be a junior this fall.  I still have PTSD even though both my D's are doing so well.  I think I will live with it the rest of my life, always on the lookout for signs or symptoms, but I have learned to better manage my anxiety. 

I know you will make the right decision for your son and your family.   If you let him go and he fails, you will know what to do! 
Kali

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Reply with quote  #136 
Hi,

Quote:
I would log onto her financial acct through the school and look at what she charged for food every single day.  I could not see what she ate but I could see where she ate, the time of day and how much she spent.  


I've been doing the same thing as well! When d. went back to school I checked after lunch every day to make sure she had been in the dining hall. Plus I monitor her bank account to see what she spends on food. It made me feel better every time I saw a charge for food or a meal eaten. 

TTP it is a good way to reassure yourself that your son is eating, if you decide to send him off. Most schools have an online account where you can actually see the number of meals eaten. Also, I recommend having a joint bank account so that you can go in and see if he is buying food or eating out.

Warmly,

Kali

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Torie

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Reply with quote  #137 
TTP, how is it going?  Thinking of you. xx

-Torie

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HateEDwithApassion

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Reply with quote  #138 
Having a young adult with an ED, in whatever stage of recovery is challenging and scary because we no longer have complete authority over our child to "make" them get well. That's really hard, and I do understand, trust, that it worries you. I also understand that dilemma of wondering if you are doing the right thing. We read advice here and wisdom, but in the end, you have to make a choice for your own child and be the parent in your own life. It may be the right decision and your child will blossom in the independence and having a purpose that is beyond their "sick" identity. Or it may lead to a blip. Noone on this forum knows that - you don't know what's coming - so you make the best choice you can and then adapt if a change is needed.

In the end, our children do become adults - even if at a delayed maturity level, and they do need to be able to live as adults. I think it's okay to give them that chance, and hope they soar, but be ready and not shocked if they do end up needing extra support again. I'll be anxious to hear your story as he attends school. I hope you'll continue to share it with us who have YA as well.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
deenl

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Reply with quote  #139 
Hi hateED,

Kartini Clinic's blog today was about relapse. It might be interesting to read.

https://www.kartiniclinic.com/blog/post/relapse/?utm_source=mailchimp&utm_medium=paid&utm_campaign=relapse&mc_cid=d9b8bfdd02&mc_eid=bf9fdc48e2

Warm wishes

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
HateEDwithApassion

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Reply with quote  #140 
Thank you, Deenl! I'll give it a read...


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
momon

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Reply with quote  #141 
Hi TTP

Just want to send you a hug and my best wishes for your peaceful growth.

We are urged, also, to let d move ahead and take some risks toward her advancement. It's hard to do but in my bones I know that we are far enough along the path, that it is time to give her more independence. For us, it's just in certain areas, nowhere near the level of change and independence for your son, but I can relate to the fear of letting that happen. I have a lot of faith in you and your team, and your son too... he's going to get there for sure! 

Hugs and sharing the trust for a great future for our kids!
trusttheprocessUSA

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Reply with quote  #142 
Well tomorrow will be 4 weeks since my son left for University (just one hour away from home). We have many supports in place. His therapist saw the possibility of him being able to manage in college when I couldn't see it at all. All I knew was he wanted to go and I wasn't sure he would ever want something this badly again for a long while. His therapist told me he has no co-morbid brain disorders and that he had been able to do what was asked of him all summer long.  We all agreed if he couldn't make it at college (we have a specific contract in place) he'd come him. So far he loves it. Its clear he has so much navigating to do but so far he is managing it. He has 3 friends from high school who attend and he knows a few of the soccer players - this has made all the difference for him. He eats breakfast in his dorm room and he has snacks there too when he needs them. He eats in the dinning hall with his friends - and he is eating food I NEVER would have expected him to be able to eat - EVER. He is maintaining his weight - 

Of course I am not sure what the future holds but today I am amazed and grateful. 

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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
Foodsupport_AUS

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Reply with quote  #143 
It is great to hear how well he is doing. Great work from him and you for being there for him.
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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  #144 
Trusttheprocess,

I'm so happy to hear that your son is doing well and is enjoying his transition to college!
Great news! Enjoy your visits with him and be proud of your role in helping him become the healthy young man he has grown into!


Kali

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Torie

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Reply with quote  #145 
 Yay!!!  So glad to hear the positive report!  As another member of the ready-or-not-there-they-go club, I know what special joy there is in seeing them seeming to manage university.  Fingers crossed for us all ... please keep us posted. xx

-Torie

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

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Reply with quote  #146 
Awesome TTP.  Hope it continues!!!
toothfairy

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Reply with quote  #147 
TTP
I am soooooo happy for you all xxxxxxxxxxxx

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
trusttheprocessUSA

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Reply with quote  #148 
Thank you all for your support and cheering us on.
The "ready or not there they go club" Yes! this. I have been asked how I feel now that he's gone and I don't know it's so strange - I have never known a parent who would have set their child off after the terrible summer we had. Brain disorders are complicated. The fear and shock of his slip recovery were so overwhelming I couldn't see anything else. I got some great advice " you can't do this alone" and that is true. I gathered all of the support I could and here we are. 

One gentle step at a time my fellow warriors.

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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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