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Thread: 12 Year Old Diagnosed and help wanted

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    Default 12 Year Old Diagnosed and help wanted

    I am new with posting anything. Please excuse mistakes.

    First of all, I have read many posts on this site, and I must say, you are all very brave and strong. I admire the great attitudes, and will to fight this disease.

    After 5 days in hospital, a bone biopsy, spinal tap, xrays, ecg, and a million-or-so blood tests into veins that kept disappearing, my daughter was diagnosed with SLE on June 1. Immediately, she had 3 days of 1 GRAM pulse treatments. Then put on 40 mg.prednisone, 200mg plaquenil, 1 mg.folic acid, 81mg ASA(she has antiphospholipid antibodies), 400 IU of Vitamin D, Multi vitamin, 1500 mg. Calium carbonate.

    Things are getting better with this terrible beast. The Rheumatologist, has lowere her prednisone down to 25mg.daily. Our family got excited. My daughter is hoping that her once beautiful hip length hair will stop falling out in clumps, and that her face and tummy will stop getting bigger. I tell her that she looks fantastic, but as she just turned 13 a few weeks ago, all I get is "Mom, stop lying to me".

    I am looking for anyone who has "been there, done that", or any helpful life hints with this.

    Thank you

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    I am very sorry to hear about your daughter's plight... 13 is a hard enough age... I couldn't IMAGINE going through all this at that point in my life... I'm throwing enough temper tantrums about it at almost 25!!!

    I was recently diagnosed with lupus too... (a month ago) My hair was also almost to my hips... When I was diagnosed and I knew that the hair loss wasn't just going to stop as soon as I stopped stressing out, I decided it would be better to cut my hair shorter... (I am also a former hairdresser) It doesn't stop or slow the hair loss... BUT when you're pulling it out and it's long like that, it looks like a lot more hair than when it's shorter... For me, it's a little less traumatic... Just as a consideration...

    Also, you might want to consider a professional shampoo line called Nioxin... It's kind of expensive, but it's SUPER concentrated so she won't need to use much... My hair is to my jaw line and I use less than a dime size amount... If you use this, you should use the shampoo AND the scalp therapy... There are other treatments that you can use in this line as well, and styling products that help, but for a basic, just to try it kinda thing, the shampoo and scalp therapy are great...

    Before all this started I couldn't even use it because I already had so much hair and it was keeping me from shedding ANY hair (you're SUPPOSED to lose at least 100 hairs a day) and I was starting to look like Roseanne Rosanna Danna!!! It takes a month or so to start actually showing that it's working, but it helps... It should at least slow the hair loss a little bit... Now, everyone's chemistry is different, so it might work better for some than for others, but, to give her one less thing to stress over it might be worth it?

    Hopefully this can help... I know hair is the least of her or your concerns at the moment... But, if she can not stress so much about one thing, it might help...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Thank you so much, SoleSinger. I will look for the shampoo and scalp treatment. I am not sure if they sell it her in Canada, but my daughter and I will look tomorrow.
    Last month, I asked my daughter if she wanted a new hairstyle, but she told me that she wants to wait. She will be starting her first year of high school in a few weeks. I think that she wants to see what everyone else is doing to their hair.
    She hasn't been in school since the first week of May, when she started feeling like crap, so she is feeling out of the fashion loop. She has never cared about what she wore or what style was in or not. I have this feeling that this will change. Because her physical appearance has changed so much she really wants to fit in. She had lost 37 pounds within 8 weeks, and the doctors recorded her as anorexia while she was in hospital, but know she has gained that weight back plus about 15 pounds.
    Anyways...thank you for your reply and hopefully talk to you on the forum.

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    I don't have any useful advice at this point mommymc, but I wanted to express some sympathy for your daughter and respect and admiration for you. Your daughter is not lucky to have this particular disease, but that's offset by having a caring mother who is willing to go look for genuine answers.

    Sending all good wishes and thoughts your daughter's way.

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    Katalanta, thank you for your generous words. It is very much appreciated. I feel that sometimes I can't find enough answers to the million or so questions that I have. Thank you for taking the time to reply. Claire

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    My daughter is still on high doses ot prednisone. Does anyone have any experience on how long it took them to get the prednisone down to 15-10mg. a day?

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    They told me I'd probably be on my current dose of 80mg/day for at least 6 months... depending how my labs come out...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    SoleSinger: Thank you for the post. :angel: I suppose I am ignorant in hoping that my daughter's pred. could be down to a low dose by Christmas, after reading your post. I am truely sorry. I know that this disease affects everyone differently, but I just keep thinking about getting my little girl back. If I may ask, do you have any internal organs that are affected by SLE, is this the reason of the dosage for you? I am just wondering. I know there are different protocols for children and adults, and for the severity of the disease, but I am also wondering about different countries using different methods?

    Prayers, Mommymc

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    I have kidney involvement. What dosage is your daughter on? I don't know if different countries use different methods... I understand about wanting your daughter back... I often find myself saying "I want my life back"... But, then I realize, this IS my life now... It probably won't EVER be back to what it was before... I'm sorry to be a downer, but, it's a possibility... I better stop talking now, before I depress you.

    I hope your daughter feels better!!!! My thoughts are with her!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    SoleSinger, first of all, you are not brining me down !! The reality of Lupus, brings me down, not kind hearts like yourself who are willing to share your innermost thoughts, feelings and advice. I know that most people want to help others, and are genuinely (sp) kind.

    My daughter is presently at 25 mg. of prednisone, (20 at breakfast, and 5 at suppertime) She was on 40mg for the first 6 weeks or so after being on 1gram treatments for 3 days. I wonder if her dosage is because at the moment, thank God, there are no internal organs involved. Reading other posts, she was fortunate that she was at BC Children's Hospital with superb Dr.'s. Compared to others it seems, it didn't take long to diagnose her. Her first blood work was April 28 and she was diag.on June 1. So I suppose I do have somethings to be grateful for.
    You are very courageous, and brave.. remember everything good is possible.

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