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Hendrixt Show full post »
ValentinaGermania
Hendrixt wrote:

I’m relieved that we’re not the only ones who have this level of caution as I think some people see us as a bit paranoid. We are exactly the same. Every contact with a relative is carefully scrutinised and we discuss what the risks are and how we will deal with it. Often we will let the person know what subject matters to avoid and what not to say. 


People might think the same about us here but I do not give anything on it now. Her new GP tried to say something like that in the first appointment there (that I am too controlling and that it is not normal to accompany a 18 year old to the doctors). I just turned the photo of his 2 little girls on his desk around and said to him: "Unless you have not sat besides the bed of one of those lovely girls watching her nearly dying we cannot talk on same level."
He never said something like that again. He was not trained in EDs either but learned something about it and read some studies and he might not understand FBT in total but he said to me recently "whatever you are doing there, keep doing it, as it seems to work. Your d is the first ED patient I did not saw relapse in the first year after diagnose".

Hendrixt wrote:
”We trust her friends more than any relative (she has a small group of lovely friends) and we are more relaxed about contact with them. They were the ones who initially raised the alarm when they noticed she wasn’t eating at school. If it hadn’t been for them we would not have discovered her illness until much later and they seem to know how to act around her. They have been present with her during all school meals which have been done under supervision of a teacher (who’s adult sister has had AN for years) in a separate room. 



Great that she has such good friends! That is really a gift.
Here the teacher had an ED background herself and therefor was a great help supervising snack. Sad enough that this is not the case in all schools...
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
tina72 wrote:


People might think the same about us here but I do not give anything on it now. Her new GP tried to say something like that in the first appointment there (that I am too controlling and that it is not normal to accompany a 18 year old to the doctors). I just turned the photo of his 2 little girls on his desk around and said to him: "Unless you have not sat besides the bed of one of those lovely girls watching her nearly dying we cannot talk on same level."
He never said something like that again. He was not trained in EDs either but learned something about it and read some studies and he might not understand FBT in total but he said to me recently "whatever you are doing there, keep doing it, as it seems to work. Your d is the first ED patient I did not saw relapse in the first year after diagnose".

Our D is only 13yrs so people are more accepting of our protective approach but even if she was 23 or 33 I think I would be the same. Amazing how you drove the message home with the photos - I bet your doctor will never forget that. Doctors in England only get about 2 hours training on ED so you are lucky to get one who is able to properly manage a patient with AN, although I am sure that some GPs will take a particular interest in the subject and self-educate. A lot of GPs over here believe that a patient has to be seriously underweight to receive a diagnoses of AN and delay referral to specialist ED services until the patient is very poorly. With our GP we were lucky as he did'nt heistate to make a diagnoses and urgent referral. 

tina72 wrote:


Great that she has such good friends! That is really a gift. 
Here the teacher had an ED background herself and therefor was a great help supervising snack. Sad enough that this is not the case in all schools...


Yes we are lucky - there is the odd slip up - they are young after all but they are a godsend and we encourage as much contact with them as possible. One of the incentives we use is that, eventually she will go on a sleep over with them - but not just yet.

Our school has, overall, been very good but in the beginning it was a bit patchy, with us having to repeatedly go into school to feed our D [she was not so ill that she needed to be absent from school]. The teacher who was our point of contact was very well intentioned but for the first couple of weeks she struggled to get other staff to cooperate, even the teacher who had a sister with ED sometimes told our D that she could go into the dining hall to eat unsupervised [resulting in nothing eaten]. The teacher talked about getting other staff to 'volunteer' to supervise her eating and she gave the impression that any support for my D was being done on a good will basis. However, I did some research and found that there is legislation and statutory guidance setting out a school's legal responsibility to cater for a child's medical needs whilst in school. So, for example, if a child has diabetes, the school is legally responsible for administering  insulin. As we know food is the medicine for our ED children. I discovered that parents can request that a 'Healthcare Plan' is drawn up setting out exactly what the school's responsibilities are in terms of catering for a child's medical needs whilst in school. What I found out led me to question the school's approach of using staff on a 'voluntary' basis. I requested a meeting with the Head Teacher and other senior staff. At the meeting I did a bit of educating them on the ED and pointed out to them that they had a responsibility to provide appropriate medical care and that a Healthcare Plan should be drawn up. Following this I draw up theHealthcare Plan myself which the school have agreed. I have also assisted the school in applying for additional funding to help with the plan. After that meeting the supervised eating has run very smoothly and the staff involved are no longer referred to as 'volunteers'.










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