F.E.A.S.T's Around The Dinner Table forum

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Amoma
With the article http://www.aroundthedinnertable.org/post/ABC-News-great-piece-on-very-young-anorexia-patients-6225609

I thought it would be useful to start a thread for those with early onset. Regarding unique challenges and issues facing the youngest sufferers up to age 13. 

YOU ARE NOT ALONE

I know for us the protracted supporting through growth is a tremendous thing to deal with.

For example we had a dip in weight two weeks ago and are back on the feed train. And status quo...
A challenge for those during puberty, the biggest growth phase of life outside babyhood.

For us this means stepping out of stage 2 and focusing on full nutrition to support gain and growth not on independent eating....

Maybe you are even younger, managing refeeding with a young one and looking for tips. MAybe your young one has issues at elementary school or with young friends that you need support through.
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YogurtParfait_US
To all in this category, hello and welcome!

Also, though that was a great article, the word KILLS in the title, um, isn't quite accurate! Anybody knows a kindergartener who was killed by AN?

xox,
YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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mamabear
I am a member of this club.... Started at 9 and diagnosed at 10. Now 12 years 9 months....

7 inches of growth so far.... Two periods now..., just went from 32a to a 34 a in bras...

6000 calories needed to try to keep up with external and internal growth... Now with period metabolism seems to have slowed enough that we are getting weight gain weekly at 6000 cals.

All food supervised. We let her have a milkshake in her room for the first time in months with friends the other day... I found it in her closet. Ed is NOT happy about growth and weighing the highest of her life.

This takes years....and the article goes a good job of articulating the unique struggle of this age group.

If I can offer any advice to newcomers it is to stay vigilant always... to accept that this age group in particular have such different needs because of growth.
Persistent, consistent vigilance!
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Onedayatatime_USA
DX at age 11 1/2 & WR at age 12. Still WR for 3 months with 7lb buffer Gained 34 lbs in 5 months & 1 1/2 inches so far. My advice trust your gut, read ATDT, Food is Medicine. Don't give up when the reward may be just around the corner
Having fun in Tween Land.
DX--11 yrs 5 mons (5/12), WR--12 yrs(12/12)
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Amoma
I know YP that word made me cringe a bit. But if it gets people's attention then that is okay. I do know that for the young ones that a descent into very acute can happed very quickly. That's what happened to us.....physically she became compromised (cardiac) within 3 months. Young ones lack fat stores...and even a few pounds loss can send their bodies into unhealthy state.

To be honest we are struggling a bit. With the weight dip. I think it is a function of age she will be 12 in April. So much as you experienced mamabear, that age is so hard to keep up with. I am having to look at monitoring more, feeding more, and dialing back sleep overs and sport to keep up with growth. Sucks . We hadn't gone through this since refeeding at 10. But I keep remembering mamabear that you said this time right before or on the cusp of puberty is the biggest nutritional time since babyhood. She wants so badly to be "normal".... 

If you have littler ones they are still going through growth spurts quite dramatically..

It is never niggling to stay at a specific weight with the young ones. It is a moving target.


Oh and tween drama at school too. Hope to use those distress skills.
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Amoma
I wanted to link a thread that contains a blog entry by Dr. Sarah Ravin one of  US best clinicians using evidence based treatment regarding AN and the very young. It is a very hopeful and uplifting article and contains many gems of information that highlight pediatric presentations.

BTW the thread was authored by Maria a long time mentor whose D was dx at 9 and is now age 16 well into recovery, not having relapsed during that time period.

http://www.aroundthedinnertable.org/post/Dr-Ravins-blog-Helping-Little-Girls-Overcome-AN-5568890
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mamabear
Do not even get me started on the mean girl drama... It sucks...and hormonal shifts in mood make things trickier. Amoma just keep going and even when her weight is up again... Do not slow down. That is my advice. This past year was like watching a newborn turn into a walker.
Persistent, consistent vigilance!
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gobsmacked_US
I know this is for younger kids, and I will step out in a bit. I just want to say that I honestly related more to parents of younger kids with my daughter, who was dx'd at 13. She is still, at 16 (and closer to recovery than to illness), on the young side compared to her peers, in terms of her relationships and behavior.

The big difference between my daughter and your children is that mine had had her period before AN set in, she was already wearing a bra, and despite being weight-restored to a good weight, she has not grown more than an inch since then. We have not had to worry about puberty as it related to recovery, and we have not had to worry about playing catch-up.

Her puberty and illness are intertwined, though, so I have had to deal with all the "what is AN/what is normal teen behavior" stuff, because I'd never dealt with a teen before AN hit. She was a child, and then all of a sudden there was depression and periods and restriction and bras, and then on the other side, she was a teen. It was very confusing to me.

I just urge you to continue bringing your behavioral issues to the group as a whole, as I think we can all benefit from discussing them, whatever our kids' ages are. Many of us are going through similar things behaviorally. AMoma, I know you and I often compare notes, and the emotional stuff isn't that dissimilar. All that drama and those hormonal shifts -- I'm not sure that is particular to younger kids.

I don't mean to sound like I think this group isn't a good idea. I think you certainly have different physical manifestations of this illness to discuss, and of course I cannot begin to put myself in someone else's life and know what it is really like. I just hope that people like me, who identify more with the families of younger adolescents when it comes to behavior, will still get to share in your wisdom.

Perhaps the cut-off is more about pre-pubescence than about age?
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YogurtParfait_US
I also have benefitted tremendously from posts by parents of older kids, teens, and young adults, because the principles of feeding are the same.

I think one benefit of this thread is to help parents of younger ones perhaps be able to find each other more quickly? There are very few of us ...

YP


"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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mamabear
Gobsmacked I completely get what you are saying...and agree a million percent.

I think for me the emphasis on age/ puberty has everything to do with how the refeeding process goes. There is no 100 percent known " goal" because we have no idea how much growth there is still to go or when it will stop.., does that make sense? For ex. My D was four feet eight inches and 68 pounds at her sickest and has grown 7 inches and put on 40 pounds. She finally hit her period but is not even close to done growing... She is still a gawky gumby kid with size 11 feet. It is the feeding for that colossal growth that has been my personal Achilles heel in all of this. Every time I think her weight is ok for a minute, she grows again or her boobs get bigger or whatever. So in a nutshell... I wish I would have just gone balls to the walls the entire time and never backed down because we have never been able to get a buffer on her. It has taken enormous calories to keep up. Never once... ever... Has any professional talked to us about any if this. Dietician s have looked at me like I am nuts.
Persistent, consistent vigilance!
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Amoma
Oh gosh I didn't mean to exclude anyone or not comment on other threads...that wasn't my intention at all. And yes I have very supportive friendships with some whose ED kids are 19, 16, 22 etc. and feel commonalities that this disorder makes us all face.

I think atypical presentations (like pediatric) do exist, and do present some of their own unique issues, like mamabear brought up. And I am sensetive to other atypicals:  For example, my brother had AN and see that for boys their own unique issues are compelling to gather support from like care givers as well.

And with the publicity of the ABC News piece if any carers of pediatric sufferers are lurking just wanted to create a safe place to land....

We are a large and compassionate community on ATDT....

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gobsmacked_US
I think these are all really good points. Just for some reason I feel like my daughter's behavior has been more similar to your children's behavior than to some of the children her own age.
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Amoma
Could be very true and very real. Dont they say that AN regresses some children emotionally and if they got it at the cusp of puberty then that makes sense! Maybe you can take the cut off age in the tag line out using your mod skills and just have it be for younger ones....What do you think?
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JDon
Gobsmacked I see where you are coming from & agree with you in many ways, probably because my daughter was also diagnosed at 13 (although in hindsight had probably been getting sick at least 6 months earlier after having just started puberty) and so in some ways resembles more closely the younger age group than the older teen. She is still growing although not as fast as the very young (in fact one incentive for her to eat was to "catch up" to her peers who had outgrown her. We also have had to weather the teen hormone/behaviour storm as she stopped periods almost as soon as she started them so since weight restoration it has been hard to determine what behaviour is ED & what is "normal" teenage unreasonableness
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gobsmacked_US
JDon, yes, that is it. Our d was dx'd at 13, but looking back was clearly sick at 12 and possibly earlier.

Girls in my family get their periods early, usually around 11/12. I got mine at 11. She got hers at 12 (and she only lost it AFTER she started gaining weight again, for just one month, which was interesting).

AMoma, how about "support group for parents of children and pre-adolescents"? That will make this more about physical development, and those of us whose children sort of fit into pre-adolescent, at times, will feel like we can fit in when we want to :-)


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Amoma
that sounds good Gob change away!
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gobsmacked_US
Hmmm... Can't figure out how to do that, so I'll leave it as it is!
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Amoma
In Dr. Ravin's blog entry she touches on some of the unique ways children and preadolescent ED patients present

"Teens and adults with AN usually have a list of “safe foods” which are low calorie and low fat – such as salads, fruit, rice cakes, and nonfat yogurt – and they tend to fear high calorie foods such as ice cream and pizza. However, sometimes young children’s food rules and food fears make no caloric sense. For example, I have worked with children who will willingly consume any beverage, including milkshakes, but who refuse to take a bite of solid food, even a carrot stick. Other kids will have a narrow list of safe foods which are familiar but not low-calorie (e.g., chicken nuggets, pop tarts, and grilled cheese sandwiches).

 Young children become medically and mentally unstable much more quickly than teenagers. Post-pubescent teen girls and women, even slender ones, start out at a higher body mass and have reserves of fat. Prepubescent children are already light and very lean. A loss of even a few pounds is enough to cause severe medical problems and extreme cognitive distortions in a child. It is not uncommon for a child to go away to summer camp completely healthy and return three weeks later in grave danger"

I know this was true for us. Some of the food rules made no sense early in refeeding...D (9) would eat a mondo grilled cheese cooked in butter with 4 slices of cheese, but pasta would send her into a ball in the corner. She would drink no water.
And we definitely saw severe cognitive distortions...

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Amoma
How have those with young ones navigated the ubiquitous sleep over? This sleep over phenomenon is also squarely a young one issue....and challenge for those with ED/
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YogurtParfait_US
My daughter has been to one sleep-over since AN. It was when she was about 1 month weight-restored.

I told the mom about Olivia's anorexia and asked her to help Olivia plate an appropriate amount of food, and to supervise her and call me if she didn't finish and I would come and get her. I said, "I know it sounds extreme, but this is a life-threatening illness and she is eating now. I don't want this to jeopardize that."

She ate both meals. When I picked her up the grandma said, "Olivia was very cute. As she was eating her breakfast she said, "I have to eat everything on my plate. And, she did."

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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anotherbite_CAN
Also part of the "little ones" club. D dx at 10 spent 11 bday ip. She is now 12 and a half. We are in recovery at moment. Wr for 16 months. We have had a lot if growth (7 inches like mamabear) and we have maintained a buffer. If she loses this buffer it shows up in her mood. I have found that that teenage angst is a signal that she needs more fat in her diet. I would not generalize on this though....it's just what I have found with my girl. Her mood is generally even and is she is "off" it's anxiety linked to something specific or she needed a little "bump up". That is partly why I pushed her over the high end of her range. The extra has made a difference for us.

My mission this year was to keep her world small and stress free. I wanted to give her a couple of years to get her mojo back before the stress of high school. Ed morphed for us....it went from food to clothes to makeup/face stuff to acute generalized anxiety. We worked through it all piece by piece and she is in a steady place at the moment. Still growing so still eating a lot. 12 year olds are hungry all the time. When her friends are over it's like locust have passed through the kitchen.

Initially we did all sleepovers here and I fed the kids just like I fed her (she hated! if I plated her more....she didnt mind if her friends did not finish their plates but they initially had to have the same amount as she did). We did nighttime smoothies so I made for everyone. When she initially began doing sleepovers at friends (post w/r) the rule was the parents had to know and only one meal away (so I would pick up after breakfast in time to fit in snack). I would add to make up anything lost. There are no restrictions on sleepovers now and I don't panic if she misses meals at a sleepover as she will intuitively make up when she gets home. This is new though (me flowing with missed meals) and does not occur generally.

Something has shifted for us in the last few weeks. It finally feels like ed has left the building. It feels like I am living with a 12 year old without an ed. We are 16 months post w/r though. 16 months of phase 1 more or less. I think the course of CBT that we did for the generalized anxiety may have helped. Even though her eating has been great for months and months there was still "something" in the background....it finally doesn't feel like that anymore. It is a long haul.
D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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anotherbite_CAN
One of the up sides of her getting ill so young was that her friends really didn't have a clue and weren't that interested in 'what' she had.  They were goofy grade 5 kids, even the most sophisticated of them really wasn't aware of the stigma (or conversely, the 'exotification' of anorexia).  In many ways her peers were oblivious.  They knew she had an but they didn't totally get it.  They were 10/11...and were very concrete.  AN= she can't eat and she has to eat so meals take a bit longer and her mum is gonna make sure she finishes.  They were fine with that: clean and simple.  She was able to live in a little bubble (a bubble of hell to be sure)....but, she did not have to wade through a moat of meaning and judgment.  I think it would have been very different with her friends if she had been an older teen. 
D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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Amoma
this update makes me do cartwheels and back flips anotherbite_CAN. Especially hopeful is the part where you say "ED was not in the background any longer". How joyous for your girl!!!

Also hopeful is the approach relationships with peers at this age as providing normalcy....

We have a sleepover tonight again. We have moved through a space where in the beginning I had to
1. provide mom made food for her to eat at SuzieQ's house and tell mom to please text me what she ate.
2. Then onto to going over what Suzie Q's mom would provide for dinner and breakfast well in adivance so D would know, something familiar to what would make at home. Mom would text me what she ate.
3. Then on to Suzie Q's mom will provide dinner and breakfast for you (unknown ahead of time) and text me what she ate
4. Next on to sleep over and weigh in a couple of days having the scale provide feed back, not SuzieQ;s mom
5. Then onto sleep over at Friend Frances's house who is new and not aware of ED, and weigh in a couple of days let the scale provide feed back.

That's where we are today. A little nervous because she had a dip in weight two weeks ago, but anotherbite_CAN has me hopeful that the level of competence will be there. We shall see...
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mamabear
I have actually found that my D has much less anxiety around eating with her teacher alone for lunch at school than eating with her friends in the 7th grade. There is SO much social drama involved in the lunchroom....who eats where and with whom and who is mad at who and who is "in" and who is "out" of the group and all of that crap. D said to me the other day that "It is kind of nice to be out of all of that because I am not there at lunch." NOT that she does not WANT to eat with her friends- but that is just simpy not an option at this point in time. The latest is that the "group" has now split off into the "crew" and the "group". H asked D last night which one she was in (joking) and she said "I am in the "croup"- I am in both.......and we laughed and giggled. So STUPID. T

hat is another aspect of this age group that I personally find so tricky- the stupid social strata of middle school. I am 39 years old and I still remember vividly how yucky that felt. So far D has handled it all incredibly well. She just tells them that she needs her medicine every day and that is why she eats with the teacher. Some kids know and some kids think it is a heart thing........and frankly they are more concerned about which boring reproduced Hollister shirt they are wearing and how their hair looks than my D and her ed.
Persistent, consistent vigilance!
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mec
I'm a graduate of the young kid club. When I came here, I was the only one with a 9-10 year old. I believe Midwest Mom came after me and then it started picking up with frightening frequency. At any rate, we "did" ED from 9-11 and re-fed at 11 with re-feeding and growth from 11-13.

My d didn't do too many sleep overs when she was ill or in refeeding/recovery. I only let her do sleepovers at homes where the Moms were good friends (one a nurse and another one my neighbor) and I knew would keep their eye on her. I think it went OK though she often acted very weird socially, so it was painfully obvious at sleepovers that something was not right with her, more so than when she was just at a party or social event for a couple of hours. At other times, we fed her before she went over and picked her up at 10 or 11 and fed her a late night snack when she got home.  
21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
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