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

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meadow

 

Hi, I last posted a few months ago and was thrilled to be able to update that my daughter (8yrs at diagnosis of AN) has been doing really well for some time now...… we had absolutely amazing support from this forum during refeeding back in 2016 and it's nice to be able to check-in with positive updates.  There were plenty of times when we couldn't see an end to the awfulness and when we found it hard to believe she would ever be able to make a full recovery. 

I'm pleased to say that d is still really well - she's 10 now and nearly in her final year of primary school, and is happy, healthy, loves eating and is keen to try lots of new foods.  Some of you might remember us and the fact that her diet was restricted down to just five items when she was at her most poorly.  It's just wonderful to see her completely back to her old self, and when she says 'I'm hungry' it still makes me beam!

When I last posted I mentioned that I'm writing a book about anorexia in the very young.  I'm a child psychologist as well as being a parent to a child with ED, so I figure I'm in a fairly unique position.  I've been getting on with writing since then and have made a bit of progress.  I'm  doing a section on school and was wondering whether any of you would be willing to share your experiences.. I'm interested in anybody's stories, but particularly the experiences of parents of the little ones.  These are the things I'm interested in...

Did your school have any suspicions/concerns about eating behaviour before your child got diagnosed?  (e.g. in our case the teachers were completely shocked and reported that d was 'absolutely fine' at school).

Did you notice any change in your child's schoolwork while he/she was unwell? 

Were the school supportive? 

I absolutely won't put anything in the book without getting permission from you - and these questions are more for my general interest than to be written about explicitly. 

Thank you so very much, 
Meadow






 
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tina72
Hi Meadow,

great to hear that your d is doing so well! I remember reading your posts.
I cannot help with information about a young one because my d was diagnosed at age 17.
But maybe it helps you in any way if I answer your questions about school also:

1) School did not get what was going on although my d lost more than 10 kg and at least the PE teacher MUST have noticed that. Funny joke aside: later I was informed by another teacher that this PE teachers job was to look out for ED in the kids. I told them to ask another teacher to do that 🙂.
2) No change in schoolwork before diagnose. She was always very perfectionistic and ambitious. I have no idea how she managed to write all the tests in that bad state looking back. We saw a change in schoolwork with her first tests after coming back to school after IP. It took about 3 months for her to get on the same level as before. She was very tired after school and could not do her homework directly after school as she was used to before IP.
3) School was not supportive before diagnose and IP but really supportive when she came back. We had a reduced schedule, I could decide when she was able to go and when not, it was not mentioned when she came later because breakfast or lunch took longer, she could decide what tests to write and what not, when to stay at home and when to go. She had no PE for the rest of the year but school offered to give her a normal PE result when she writes some theoretical pages (which was very easy to do). Her teacher was very supportive and did supervise morning snack perfectly 🙂.

Hope that helps and thanks for taking time to write that book, I am sure the parents of very young patients would appreciate that a lot.

I wish you and your d all the best and hope that ED will never set a foot into your home again!
Keep feeding. There is light at the end of the tunnel.
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debra18
I emailed you. Please let me know if you got it.
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meadow
Hi

Thank you so much Tina, and I'm really glad that you had some supportive experiences with school afterwards at least.  I hope your d is doing ok?  I really appreciate your response.

And thanks Debra - good to be in contact. 

Meadow
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Mcmum
Hi Meadow,
Great to hear that your daughter is doing so well.  Those words "I'm hungry " must be music to your ears!
Our son was 9 at the time of diagnosis last August. 
With regard to school :
1. We and school noticed that something wasn't right but didn't relate this to eating.  At parent's evening in the spring, the teacher said that my son stared blankly at her and didn't seem to connect.  I had also experienced this flattening of emotions and facial expressions  and was worried about it but didn't know what to do. 
2. My s was keeping up with work but had no interest in it. His love of reading dropped off and his vocabulary shrunk. It was like he regressed but was smart enough to keep up. He is bright academically but didn't appear to be so during this time.  
3. He was grumpy when we collected him from school and went from being a child noted for his humour to being quiet, sad and withdrawn.  School didn't comment on this. We just worried like crazy.
4. He had stopped eating completely at school.  No one noticed.  I still struggle with this! 
5. School became concerned when the time came around for swimming.  My son looked skeletal by this point and didn't have the strength to get out of the pool. By this stage, my daughter and I were trying to convince my h that our s had anorexia.  He was in denial.  School called me in. My s broke down and confessed to dumping his food.  We had a doctor's appointment the next day and then fully launched ourselves into the world of anorexia. 
6. School supported a reduced day, camhs appointments, supervised lunch and snacks and so on. They still do. Things are not perfect - but generally they have been supportive.  
Please do email for more information.  I put this on here in case there are other parents of young children.  My son is growing, eating, regaining an interest in everything again and makes me laugh.  A lot 😀
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tina72
meadow wrote:
Hi

Thank you so much Tina, and I'm really glad that you had some supportive experiences with school afterwards at least.  I hope your d is doing ok?  I really appreciate your response.
Meadow


My d is doing very well, thanks for asking. Did her driving licence, finished school last year, started university in October (on half schedule and still living at home) and has a pretty good social life. She is totally back to her normal and eating even more variety then before ED moved in 🙂. ATDT saved her life.
Keep feeding. There is light at the end of the tunnel.
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krae
 Meadow, I also can't help with a young one as my d was 14 when diagnosed. I can say that her school has been fantastic. D was out of school for most of 2018 and went into Senior School this year - yr 10 - 12.

Last year after alerting her pastrol care teacher and counsellor, when D did attend school it was with full support from her teachers knowing her situation. All teachers in all the subject she took were advised not to comment on her appearance or make any remarks regarding food and eating, even tho they weren't given the full details.

Her pastrol care teacher was particularly fantastic, as she had noticed that a lot of the girls weren't eating at school and introduced a toaster and muffins/toast/wafffles for 'Early morning tea'. This worked really well with the pastrol care class. D didn't benefit as she was too ill to be at school for most of the time, but it hopefully helped some other young ladies to realise that food is necessary to live and learn.

I have always had the full support of school, in particular, my daughter's counsellor has been a great support for myself and d through out the last year when things were really bad. She initiated a school visit from our CAMHS nurse, with my consent, to educated the councelling, health and well being staff at school in ED.

If d was able to go to school there was a plan in place to keep her safe and ensure  that she would eat with a nurse and then be walked to her class, fully supervised. No stops on the way, although d has never purged (to my knowledge).

They have a program called FLEX which allows d to go to school 4 days a week 9am til 1pm, but also allows some subjets in mainstream schooling. Currently d does music in mainstream. I will say we are finding it difficult now after first term, where she has completed all work asked of her for the semester. It was said that she could transition back into mainstream when ever she felt able. That is not proving to be the case and is causing a lot of anxiety. FLEX apparently only offers basic subjects which is not what we had previously thought it would be. Still working on this issue. D is very bright and now I'm finding it hard (I'm a very poor single parent). I wish I had the money to get her a maths tutor as all she wants to do is get back to 'real maths' not essential maths that they are giving her, and not being able to provide her with enough work.

Sorry got slightly off the point there. My frustration with how the education department can help is making me upset.

As for support I would give her school a 10 out of 10!
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tina72
krae wrote:
  D is very bright and now I'm finding it hard (I'm a very poor single parent). I wish I had the money to get her a maths tutor as all she wants to do is get back to 'real maths' not essential maths that they are giving her, and not being able to provide her with enough work.


Krae, I do not know if it would be worth a try but my d learned a lot of the missed subjects with youtube tutorial channels. They are often very good and can replace a tutor you must pay for. Just an idea, I do not know if there are tutorials available for the stuff she is doing at the moment...
Keep feeding. There is light at the end of the tunnel.
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deenl
krae wrote:
 D is very bright and now I'm finding it hard (I'm a very poor single parent). I wish I had the money to get her a maths tutor as all she wants to do is get back to 'real maths' not essential maths that they are giving her, and not being able to provide her with enough work.


Hi krae,

My son is also excellent at maths. We use a free program called Khan Academy for maths and science. He works away at his own pace which is such a relief as the class pace has caused him problems all his school life! There are a few different ways to set up the program so encourage her to explore a bit. You can email me if you want.

Warm wishes,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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krae
Thanks Tina, I know my d is always on youtube and I think it may be the way to go for her. I know she will get there, she's only 15, and now has so much that she wants to accomplish. I think at the moment we are in a situation where d is ready to get back to learning but the school are not up to speed on what she can achieve. She is so bored and has told me that she watches ice skating on youtube in her FLEX class! Still young days here with her weight, but as I've previouxly said on other threads, she is so much more there mentally than her being WR. State not Weight has been the case here. On saying that she is in a healthy BMI, albeit at the low end.
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meadow
Hi, thanks McMum - yes, my daughter's school didn't notice she wasn't eating her lunch either!  It's sounds as if your school were pretty  observant otherwise though and I'm glad things are improving for your son. 

I believe ATDT saved my daughter's life too Tina.  Great to hear your update.  I think you joined the forum around the time things started to really improve for us.  And thanks a lot Krae too.  It's amazing how much variation there is in different parts of the country.  What a shame FLEX didn't turn out to be what you expected, but on a positive how great that the school welcomed advice from CAMHS.  Re maths, I don't suppose there's any mileage in linking in with the home education community?  It's not something I know much about and I imagine you don't have lots of time available for hunting around... so please just ignore if that's not helpful!

 
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krae
deenl thanks for the info about Khan Academy. Apologies I would have replied earlier but our internet has been down most of the day. I will attempt to get d to explore that option. Ho[efully it can assist her.
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Mamaroo
Hi Meadow

I'm happy to hear that your d is doing so much better.

My d became ill at around the age of 9 (year 4). First signs were increased anxiety which corresponded to the start of puberty and a feeling of boredom. I also moved her to a new, larger more academic school, which provided extension classes, which was supposed to help with her feeling of boredom. However, later on she complained of being bored more and more and was her primary answer when our care coordinator asked her how she was. Looking back, I would say her feeling of boredom had more to do that something in her brain wasn't working properly (even before any weigh loss or restriction had occurred). She became visibly ill during the long school holiday between year 4 and 5 and towards the end of the holiday I took her to a dr and asked for a medical certificate to exclude her from sport at school. So she was excluded from physical education and swimming lessons, which helped to slow the weight loss. The school also offered the services of their school psychologist, but since she believed in the 'control' theory, her help was useless. My d deteriorated quickly and ended up in IP for two weeks and was admitted to the hospital's eating disorder program, which required that she only attended their appointments (no outside dr, dietitians, psychologists etc), which was a very good thing.

The PE teacher still made her exercise (walking around mainly), so the team at the hospital visited the school (PE teacher and associate principal) to discuss her illness and to exclude her full time from PE. I remember the associate principal wasn't too happy about the meeting as it implied that they didn't look after my d well enough. Luckily the PE was stopped and my d was also excluded from health classes. Her teacher taught those classes when she had her weekly dr appointment. After about a month or so it became clear that my d was not eating at school, so it was organised that I meet her in the car park during lunch and recess to supervise her meals. They allowed me to park there so that it would not be necessary to sign her in and out the whole time. They were also very flexible when my d was later for school or even left school early. She was given extra tasks to do in the library during PE. Even though they really did try to accommodate my d, they found it very hard to separate the illness from my d and I got the feeling that she didn't receive the same level of sympathy than my older d did when she broke her arm. She was punished when her school books were out of place and wasn't given school work they did when she was at medical appointments. Eventually I lent her teacher the book "Brave girl eating", which made a huge difference as she was much more sympathetic. 

My d struggled with school and would beg me to take her home at recess and promised that she would follow her meal plan if I took her home. So I did and she completed her meal plan without complaint. The hospital, on the other hand, thought that missing school on such a regular basis, wasn't good and a second meeting was held to get my d to stay in school. Her teacher volunteered to stay in class during recess to 'supervise' her. She wasn't required to check that she ate, the scale would tell weather she ate or not. And she did, so she managed to stay in school for the whole day. At least now her teacher was on board. Because my d missed so much school her friend asked to be moved to another desk and she was sitting alone for some of the time (which was a fair request, can't blame the friend). My d was placed with a girl who frequently threw tantrums and had other behavioural issues. At that time my d got anxious about the weight gain and started cutting. The girl saw that, told her mum and instead of telling me, went to the school who contacted me and demanded I return to speak to them immediately. She made a big scene and I took my d home. When the hospital found out what had happened they organised a second appointment to educate them how to handle her anxiety. By that time I had enough and decided to move her back to her previous (small) school the following year (year 6). I wanted her to recover sufficiently so that she just slotted back to school as if nothing had happened. Luckily she still had contact with her friend there, who was really supportive when my d was so ill. Her started her new (old) school without a problem, only 2 teachers were aware of her illness. I didn't supervise her, she ate with her friend and the scales confirmed this. 

Academically wise, my d did really, really well when she was ill. Her handwriting was perfect and her grades as high as ever. Previously she was an above average student, not a top student. She had to sit the national testing (NAPLAN) as well and despite missing a lot of school before the testing, did very well. Now she is back to her normal above average self. Her handwriting had deteriorated to previous standards. But I don't care, she is back to her happy, social self and is eating without a problem. 

If you want any more info or detail, please contact me, I'm sure I'll remember more details as soon as I press the post button :-)
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
Jojo2271 wrote:
My d was diagnosed 8 weeks ago.
School have been awful, they are very clear that they will not provide any support at all when she returns to school (long way off).
They are good at liaising with her IP unit school but as for pastoral care it is nil. 
Pastoral support staff's first response to me ringing to tell them d now in hospital was "well we won't be able to help with any meal supervision, and if she can't do pe she'll be sent to library, unsupervised" 


I would float them with Eva Musbys helpsheets for schools...🙂
I find that quite strange that they refuse any help so blunt. Are there no laws that school MUST support kids with chronical diseases (and ED is one)? Here there is a law that kids with chronical disease must get special support and should not have any disadventage from that. In US there is also something like that I think it is called 504 there after the paragraph in law. Does UK not have that?

School academics did not suffer here until IP. It was during refeeding months later when all the depots in the body were empty that she had a little setback with grades but she got back to her old level within some months and graduated as best student one year later (although she was not in school at all for 4 months and only half time for about 3 months). I just want to say with that that school is really not most important point on the list during refeeding. They will get that later when the brain is fully nurished again without any problems.

"Her pe and national level hockey coaches now say they noticed she lost weight and her energy and performance had dropped off but no one apparently thought to talk to her or us or her form tutor."
The pe teacher of my d did not see that she lost more than 10 kg. Later I found out that she was the one that school had instructed to have a look for ED kids. I asked school to please instruct another teacher for that 🙂.

"It breaks my heart that if someone had flagged things early it would have given me the confidence that my niggling concerns were right"
We really need those early flaggs in our society. ED is so tricky and the parents are often a bit blind to see it (my hands up, too). The older they are the less you see them in underwear or under the shower...Her pe teacher saw her in a tight sports dress. I never saw her in that dress at home. I only saw her in baggy clothes and wide shirts. Her face was the last part that got thinner so I had no idea what was going on until it was obvious. When I first saw that skeletton body at the doctor I was shocked. And then the doctor told me that this is puberty and she will start to eat when she is hungry...what a joke.
We all think we should have seen it earlier and we should have helped them better. But this self blaming does not lead to anything. Try to look forward. You can now give her the best treatment that is available. You can now help her to have a better future. It does not help any of you to look back and think about all these "what ifs".
Keep feeding. There is light at the end of the tunnel.
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