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From: nannahof65/25/17 11:10 PM 
To: All  (1 of 4) 

Hi, my granddaughter (12), is still waiting on a formal diagnosis.  We have had some tests done, now just waiting results.  Recently, things seem to have gotten worse with her.  We first experienced a problem with her in May 2016, since then we have been trying to get answers.  

Up until the last (maybe) 2 1/2 mths, she has been very affectionate, love cuddles, (on her terms) and would love spending time with us.  Now, since then, she doesn't want to interact with us, communicate, unless she has to and now, NEVER have any TOUCH at all, even an 'accidental' brush or slight touch of a finger, will make her 'cringe' and shy away.  She says, 'people confuse me', 'I don't understand people', 'I don't understand emotions'.

Is it possible it is a worsening of the condition, a further part of the condition becoming prominent or is it her being (almost) a teenager and just choosing NOT to want us near her?  Her mother is extremely upset and feels rejected and her heart breaks, everytime her daughter rejects her and can't understand what is happening and neither of us know how to help each other or our little girl.

I am struggling to hold the family together at the moment, and still no-one, seems to want to help, without the 'formal' diagnosis.


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From: Lochfinis7/10/17 10:11 AM 
To: nannahof6  (2 of 4) 
 6302.2 in reply to 6302.1 

IMO, you need to connect with her in her world. Whatever she likes doing, you need to like doing it too, immerse yourself. If she is into gaming and lives Zelda for example, you play it with her and you learn all about the games. If she is feeling different and on the outer because she can't understand, then you need to do the changing and break into her world and she will come back to you. 


From: Merrill (sudsywudsy) DelphiPlus Member Icon7/27/17 9:36 AM 
To: nannahof6  (3 of 4) 
 6302.3 in reply to 6302.1 


It is important to investigate if she is being bullied,  mistreated and/or disrespected at school.   She might be acting out when she comes home due to difficulties at school.  




From: nannahof67/27/17 6:13 PM 
To: Merrill (sudsywudsy) DelphiPlus Member Icon  (4 of 4) 
 6302.4 in reply to 6302.3 

Hi, Merrill

Yes, she was being bullied at school and that is how we found out about her condition.  She tried to commit suicide and we took her to the hospital, and they noticed some things that they thought might indicate 'asperges'.  That was in May 2016.  We have been trying to get a  formal diagnosis since then and are still waiting.  She has had IQ and Cognitive tests and are now waiting on an appointment with a pyschiatrist to try and get a diagnosis of exactly what is going on.  


She no longer goes to  school, but studies at home through distance education.  But, some days, she just does not want to do things.  She can't handle people, and just wants to be by herself. Some days, she is good and is sweet and behaves really well other days, she just doesn't want to co-operate with anyone and I can see the frustration in her.  I don't know if she has any control over these times or if she just sees the world as a scary place and is reacting to it.


It seems, mostly, that if she is not under any 'pressure', she can handle things, but if she has to deal with things she doesn't like or is pressured to 'perform' a certain way she can't cope.


We are doing our best, so hopefully we get to the bottom of things soon




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