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Thread: Children of Lupus Patients? Support Forums?

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    Default Children of Lupus Patients? Support Forums?

    Hey everyone- My aunt, who I am very close to, has been living with Lupus for about fifteen years and is a single mom to a twelve year old daughter and an eight year old son. This illness has been very hard on her kids, particularly her daughter who now takes medication for anxiety and often acts out by verbally attacking her mother and having fits of anger. The anger fits are then followed by what seems like false remorse and fake tears. My aunt, who already has a gentle personality, has a hard time finding the energy to deal with it, let alone knowing exactly how to deal with it. Our family is very worried that her daughter will continue to treat her mother this way and eventually become a very bitter and angry adult.

    She's seen therapists and takes her medication but so far there has not been an overall, steady improvement. I was hoping to find a place where she could talk to other kids about her feelings or at the very least, a good book about the situation that may help her.

    Any ideas? Thanks so much everyone!

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    Hi Bananalee,
    Welcome to the site. My name is Kathy and I have SLE, Lupus. My husband and I have raised two children. My son is 25 and my daughter is 23. I had problems with my daughter when she was a teenager too. I found out that my daughter acted out and mean towards me, because she was afraid. My twin sister talked to her and I to this day do not know what she said to my daughter, but what ever it was it sure turned her around. I hope that your neice will start treating her mother better. I will have your sister in my prayers.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Bananalee. I agree with Kathy on this one My son was very angry with me when i first got diagnosed and my PCP had a talk with him and he has come around. From what my pcp told me he was angry because mommy was getting all the attention and he didn't like that. But I hope things get better with your aunts daughter . God be with her and help her daughter get through this. Also I am glad you are concerned about your aunt. Some people get shut out by there family members . You are a good person for being so concerned.


    Godbless

    Sandra
    The boundaries which divide life from death
    are at best shadowy and vague.
    Who shall say where one ends,
    and the other begins?

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    My daughter acting differently when she found out I had Lupus. She went into denial and whenever I felt bad she would say, "Oh, Mom,
    You are fine and are exaggerating." She never did come to the realization that I was really sick. Perhaps if she had had a lupus support group, online or at a physical address, she would have come to the realization that Mom was not well. She would not even let me talk about being sick with Lupus. She would say, "You are sick all the time and I am tired of hearing about it." I would then have to button my lips.

    Other than that, she was really a sweet girl, and I really did understand her point of view about the Lupus. I really believe she has Lupus herself because she gets sick all the time and has since she was a teenager. I mentioned this to her and asked her if she wanted to be tested, etc. She said, "No. She would rather just live her life and not know, at present, if she has Lupus or not."

    Has this happened to other's in the group? Wanting a daughter or a son to be tested and getting the response I got.

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    Hi Kasey,
    I am going through the same thing with my daughter. I don't think that she has Lupus, but I do think that she has Antiphospholipid Syndrome and boy she refuses to get tested for it. I think she has this because has a history of a miscarriage and a tubal pregnancy before she had her beautiful little boy. Whenever I mention it to her, she says oh I do not have Lupus or anything like that. Worse is when she lies and tells me that she has been tested and does not have it. I guess there is not much you can do except pray and hope that nothing bad happens with them.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Here are a couple of websites that have several links to articles for youth dealing with a parent's illness:

    http://www.tpronline.org/issue.cfm/A...FRg6awoddRHR1g

    http://www.restministries.org/life/parent-is-ill.htm

    Hope you find these helpful.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thanks, Susie for the websites and thanks Kathy W. for your reply. At least, I know I am not alone.

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    You are most welcome. I hope you find some ways to help you in this!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    My son is 18 years old and when i first told him that i had Lupus he said that it was fatal then i talked to him about it and i thought that all was well then i realized that he wouldnt talk about it and when i was talking about it he would shut it all out he just didnt want to know and he just didnt want to talk about it,then this year in July he started a lupus group on facebook and he now is such a piller of support for me.

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    Hi Sak,
    That is so nice of your son. He is getting the word out and that means so much to those of us that have this illness. I am so proud of him that he is so supportive of you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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