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mommymc
08-17-2005, 10:43 PM
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 :D

SoleSinger
08-17-2005, 11:04 PM
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...

mommymc
08-18-2005, 01:14 AM
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.

Katalanta
08-18-2005, 06:14 AM
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.

mommymc
08-18-2005, 10:29 AM
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. :D Claire

mommymc
08-27-2005, 01:52 PM
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?

SoleSinger
08-27-2005, 09:14 PM
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...

mommymc
08-27-2005, 11:43 PM
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

SoleSinger
08-28-2005, 12:33 AM
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!

mommymc
08-28-2005, 11:54 PM
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.

SoleSinger
08-30-2005, 03:48 PM
Her dosage probably also has something to do with her age and weight and all that too... They told me that in the beginning they usually want to hit it hard and then bring it down from there... But, I guess "hitting it hard" is different for everyone!

Once I finally got some REAL medical attention, they diagnosed me pretty quickly, too... It took them less than a week... Which was really impressive, I thought... So, I asked over and over HOW sure they were... 98% sure works for me, I guess...

Thank you for all your kind words. They mean a lot!

Between you, me and this board, I don't feel very brave at all...

Thank you again! I hope your daughter feels better soon! I hope she's liking high school!

mommymc
09-01-2005, 09:06 AM
SoleSinger:
I forgot to thank you for the advice for Nioxin shampoo. So, thank you. We did find it at our local Wal Mart. We are using L'Oreal Extra Gentle Kids 2 in 1 shampoo and conditioner. we have noticed that my daughter's hair isn't coming out in such great clumps. Hooray!! I have also found that if I don't comb her hair with a large combed pick until after it has been dried on cool setting with the blow dryer, that less hair falls out.
Thanks again.
Everything good is possible !! :angel:

SoleSinger
09-01-2005, 12:48 PM
No problem! If there's anything else I can help with just let me know!!

Wow! I didn't know Wal Mart sold Nioxin! I thought it was only at salons! Cool!

Glad that her hair is sticking around a little better!

:)

Myrna
09-17-2005, 02:33 PM
mommymc:
My heart is with you as I read your story about your daughter as I too am a mother of a 15 year old victim (she was diagnosed at 13.) I also lived around the Lupus disease all my life as my mother is too a victim and has been for 30+ years.
It is very difficult to deal with the changes that Lupus has in store for our girls lives. But you have to keep telling yourself and her that you're willing to fight it. That's the only thing that keep us going. My daughter started off at 80 mg of pred in January of 2004, by Nov of 2004 she was decreased to 0!! We thought that was great...but it wasn't...she started losing weight very fast and became ill within a couple months. By the time April 2005 came around she had lost 30 lbs and need to be hospitalized. To make a long story short she is now on cytoxan (for six months) plaquenil, pred, vasotec, and others just to keep her going. Her pred now is at 20mg and I'm in no rush to get it lowered, I do believe that rapidly lowering her was what got her sick in the first place. They are so young and the swelling that comes with the meds definitely makes in impact on them, but I can tell you that all though it is hard in the beginning, she will adjust.
I understand when you say you want your daughter back, I felt the same way. The become very depressed, angry, and lose some of their self-esteem with this.....but I've grown to realize that this is my new daughter, the one the Lord decided to give me and the one I will take care of and love.
I will pray for you and your family for quick healing and hope that you can soon find some peace for your little girl.

Much love and blessings,
Myrna

mommymc
09-17-2005, 07:25 PM
Myrna:

Thank you so very much for sharing your very touching, personal story with me. You are very strong to have such a possitive outlook on your life. I admire you !!

It is very comforting to have a 'mom' know how hopeless I feel sometimes. Everyone has been so great on this board !! But being a mom, who always makes the 'boo boo's' better, who can't fix this one, leaves me with a feeling of dispair at times.

I am starting to know my daughter as she is now. She is still my child and I will always love her and do my best by her.
I hope to talk with you again. Thanks for listening, and replying.
Claire McDonald