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Hendrixt Show full post »
Ellesmum
Like you and Sandie I also had that ‘regression’ still do sometimes and I’ve spoken before about reaching the baby in d sometimes and treating her as I did when she was a toddler and unwell- tucking her up in blankets on the sofa with a cuddly toy, soothing voice and making hot buttered toast, I’ve even ‘fed’ her warm milk from a (sports) bottle before now. I guess it’s soothing when you’re confused and scared to have mum make it all better again, it was a valuable method to have in my toolbox sometimes.  

Agree with giving the school the print outs, I did that too. 
Ellesmum
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Tica
A support worker supervised my d having morning snack and a member of our family went into school every day for two terms to supervise lunch. This was a big commitment on our part, but I didn’t want the risk of lunch not being eaten, so me, hubby and grandma managed to cover it between us. The school provided a room we could have sole use of for the hour. Even then, snack was not always supervised properly and I had many email exchanges with the support worker about this. Even lunch with us didn’t always go without a few slip ups, d hiding food in her school bag and spitting food into her aluminium water bottle - she has a clear plastic one now...
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Hendrixt
Yes Tina - the advice is very practical and comes from someone who’s obviously been on the front line. Using her book I got D from eating a couple of blueberries a day to eating something 6 times per day a couple of weeks before we got her into CEDS/ CAMHS. 

Ellesmum - we do that sort of comforting all the time - D also sleeps with mum now every night. It’s reassuring to see her cocooned in her mums arms- wish we could make her feel that safe all the time 😪

Scarlett - Is the route through the school SENCO then, I didn’t know that, didn’t even know what a SENCO is. Ive been trying to ring the council’s parenting & Families Team but they don’t answer the phone or respond to their voicemail. Should I go through the school instead - the school are really trying to help - just feel that they’re struggling to make it work. What sort of argument could I make? For example is it possible to argue that her Mental Health difficulties (ie anorexia) require her to eat twice at school. If this can’t be done then we have to take her out if school, therefore this is impacting on the ability to learn.
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tina72
Hendrixt wrote:
Ive been trying to ring the council’s parenting & Families Team but they don’t answer the phone or respond to their voicemail. Should I go through the school instead - the school are really trying to help - just feel that they’re struggling to make it work. What sort of argument could I make? For example is it possible to argue that her Mental Health difficulties (ie anorexia) require her to eat twice at school. If this can’t be done then we have to take her out if school, therefore this is impacting on the ability to learn.


Yes and yes!
It has impact on her learning, it is a chronical disease (more than 3 months to recovery) and here the kids that suffer from a chronical disease have a legal right to get help in school so I think it will be the same in UK (or at least should be - I hope someone from UK will come up with more information about that soon).
In US that is called 504 I think, here it is called "Nachteilsausgleich", maybe it helps to google the translations for that in UK.

If she would have broken her arm she would get help in school, if she would have cancer she would get help in school and now she has AN and needs help with eating in school, there is no difference for the legal system.
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Thanks Tina. I’ve made a call to our Information and Advice service to find out how to go about it. I’m just waiting for someone to call me back. 
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tina72
Be the squeeky wheel until they help you. Your d has a legal right for support.
Maybe that here helps:
https://www.gov.uk/illness-child-education
https://childlawadvice.org.uk/information-pages/supporting-children-with-medical-needs-in-schools/
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Thanks Tina I’m squeaking like mad already! Im going through the information you’ve sent and also now receiving support from the Special Educational Need Disability Information, Advice & Support Service who are helping me to engage with the school, including their SEN coordinator to make sure that the school access the appropriate funding and fulfill their legal responsibilities to provide the appropriate care. There is a lot of good will from individual staff but I’m afraid we can’t rely on good Will alone. Thanks very much for the link 
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tina72
Do never rely on good will alone, you are totally correct with that 🙂.
If they send someone to supervise meals there please have a personal talk to him/her and make sure he/she knows all the tricks about hiding food. Here a girl in IP hid food directly under the eyes of the nurses...all other girls noticed it but the nurses were blind for it. You need to know all the ED tricks to be able to see them.
Keep feeding. There is light at the end of the tunnel.
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