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Help for a Friend?

post #1 of 2
Thread Starter 

So what is my friend's daughter's condition? No one seems to know, very strange case. My friend adopted her from China when she was three, mostly because she's deaf, and Mei (the daughter) is deaf as well. However, she has been found to have a whole host of other problems as well- epilepsy causes seizures every night, she has eating sensitivities and has many bowel, intestinal, and stomach problems that has required many surgeries. She has neurological disorders that keep her functioning at a two-year-old's level. She is incredibly hyposensitive when it comes to pain and things like that, but hypersensitive to food textures. She has very little strength for walking, although she can walk. She is still not toilet-trained, even though she is 9 years old. The family is afraid of her ending up in group home or being institutionalized, although this seems viable at this point. The family is struggling with caring for Mei with only a single mother and an aupair (spelling of this word- IDK, sorry- it's like a nanny from abroad) present and a 13-year old also deaf daughter having to take over most of the chores and caring for herself and Mei, as well, since mom is busy working, and when she's not, she focuses on Mei. A doctor has suggested that this could be a genetic disorder having to do with a reaction in the body because of inaccurate vitamin absorption, or something like that. They are not willing to seek help and support beyond family, aupair, and doctors.

 

So, thank you for reading this and please help my friend, I don't know what to do or how to help.

post #2 of 2

Ways to help... Maybe offer to help her; fix some meals, help the 13 year old with chores, or do stuff with the 13 year old.   Is there any organizations in your area that offer respite care?  They might be specialized enough to help care for the younger child.  

 

Some types of epilepsy are associated with developmental delays like Lennox-Gastaut, which has seizures that are hard to treat with medication.  Her neurological disorder could be linked to the epilepsy, and it is not unusual for it to be comorbid with other conditions.  Is she being treated with an aed for the epilepsy?  Some of the medications can have side effects like abdominal pain and also disrupt absorption of vitamins; you can find drug and epilepsy information at epilepsy.com.  

 

Hope Mei feels better sooner than later; glad she is in a loving home.

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