View Full Version : Hello new here ... daughter has Lupus

09-09-2006, 09:29 PM
hello :) i just wanted to say hi. my daughter is 15 and was diagnosed when she was 12. along with lupus she has Chronic ITP, antophospholipid syndrome, rhumetoid arthritits and IBS.

she does pretty well most of the time. i just have a really hard time trying to get her to take her meds. i just had her in the emergency room last weekend because i thought she was developing blood clots in her calves because she popped up with some half dollar size bruises that were almost black overnight. after CBC they said that her platelets had dropped again and thats why she was suddenly bruising. she is usually in the 65-70,000 range and they dropped to the 40,000 range. she is okay and has an apointment with her rhummie monday morn and an appointment with her hematologist after that.

do any of u have trouble taking ur meds or just hate it so much that u just dont do it? as much as i have tried to help this girl she just hates it so much that she would just rather NOT take them.
i have made her charts, yelled at her, talked to her nice, cried and screamed but nothing works.

anyhow, thanks for reading my ramble :) have a great weekend.

09-09-2006, 11:11 PM
Hi Tina,

First of all - welcome! You've certainly come to the right place to meet your "wits end" :o :o !

I'm sure it has alot to do with your daughters age, and activities, etc.; and we girls know how important our social lives are when we're fifteen! I know it's a tought job; but it is so very important for her to take those meds. Believe me; there is hell to pay when you have to play the catch up game....and sometimes it can be dangerous - if she's been on prednisone.

Our awesome moderator, SaySusie; as well as many others here - can share with you their experiences with their daughters. As for me; what I finally had to do to keep track of taking my meds was this: I bought those weekly (breakfast/lunch/dinner/evening) pill boxes. I bought mine at Walgreens. I had a TERRIBLE time remembering to take my meds, being absent-minded and busy are not a great combination for someone who lives on so much medication :wink: . I eventually bought 4, and I fill them all up at one time; and I lay one out - right on my kitchen counter as a reminder - and it keeps me on track. I'm sure if you wanted to add a little "fashion" flare to it, you could buy those cute stickers to put around it????? Listen to me, I'm a single mom who has only raised a son - so I'm a little rusty on the girl things. So if you're shooting me the "rasberries".....that's quite allright (smile).

There are plenty of knowledgeable people in this "family" who can be of more technical help than i, lord knows - I'm having enough problems trying to understand my antiphospolipid doohickeybobs :) !

Need to run, it's getting late.

So kick off your shoes, you've come to the right place to find friends who are the kindest folks you'll ever meet. We're glad you're here! Don't worry mom, this is a great place to find comfort, reassurance, encouragement - and yep, we laugh a little around here too !! :lol: :lol:

Please take care, and stay plugged-in, you'll love it here.

Much love,

09-10-2006, 06:50 AM



09-10-2006, 11:27 AM
Hi Tina;
I understand your frustration, A major problem for teenagers with Lupus is the change in their appearance and their ability to participate in activities with their friends. Often Lupus can cause appearance changes on their face and this becomes a very real issue to them (even if they never voice it to you). The characteristic rash and puffiness of lupus, or the acne caused by steroids cause your teenager to question how she looks to the world (and how she looks to the world is of great importance to her). Going through the teenage years is a stressfull time fraught with emotions that are like a roller coaster, even for healthy teenagers. But, to have to deal with a chronic disease on top of everything else can cause extreme stress and severe emotional crisis for a young teenage girl. You care greatly about her taking her medication..she cares greatly about not being able to do the things that her friends do and not looking or feeling her best or having to deal with the cruel questions from other teenage girls. These issues are her driving force, not her overall health right now. That may not make sense to us as parents, but it is her reality and we must accept that and help her, keeping these realities in mind.
As parents, we will always tell our children that they are beautiful, you'd be surprised how little weight that carries right now, she needs this acceptance and support from her peers. However, it is still important to discuss all of these issues as openly as possible with her because these issues are a major source of her stress and worry. Because of these many issues and the many adjustments necessary for a teenager with lupus, individual counseling may be necessary and has proven to be helpful to some adolescents. Support groups are an ideal way for teens to get the peer support and acceptance they need. Teens who attend these groups report a decrease in feelings of isolation and are better able to accept their illness and to take care of themselves.
Here are some books/publications/websites that may offer you some help also:

For Inquiring Teens With Lupus: Our Thoughts, Issues & Concerns:
Created and published by Hospital for Special Surgery Charla de Lupus (Lupus Chat) Program, New York City , NY , 2003. Illustrated in neon-bright colors, 20 pp. This booklet discusses subjects that matter to teens in language they can relate to, such as what lupus really is, how to share feelings with family and friends, changes in body and mood, and what the future may bring. Above all it offers encouragement and the power of positive thinking. Made possible by the generous support of Rheuminations, Inc. Call (866) 812-4494 for ordering information.

Author: Jaclyn Law, a young woman with lupus
This webzine for older teen girls provides insight into living with lupus through the stories of author Jaclyn Law. It also contains links to a variety of websites with information on lupus.

Author: TeensHealth and The Nemours Foundation:
Geared towards teens, this site describes lupus and its causes, signs and symptoms, treatment, and how to help a friend with lupus.

Ontario Lupus Foundation
Author: Ontario Lupus Foundation:
In this site, lupus patients can connect with other patients their age. The site also contains information on lupus, coping and living with the disease, and dealing with the reactions of friends and family.

Lupus: Everything You Need To Know
Dr. Sasha Bernatsky, Dr. Jean-Luc Senecal
Firefly Books Ltd, Richmond Hill, Ontario
Book 160 pages. January 2005

Let me know if these are at all helpful or if you need any more!!
Best Of Luck

09-10-2006, 12:52 PM
Tina I can relate to your daughter. I was diagnosed at age 11 and as I got older I did not want to take my meds. I was in remission for a long time and felt I was "normal" like everyone else and didn't need my meds. It took it's toll in the long run and eventually caught up with me. Being that age and dealing with this disease is very hard. You just want to fit in and be like everyone else and that's not always possible. Even us adults can be stubborn at times and not want to take our meds because we want to feel normal. My mom was annoying and still can be :D about me taking my meds but continue to be that annoying caring mom. She may get mad at you and frustrated by you asking "did you take your medications" but she will benifit from it in the long run. Glad to hear that your daughter did not have any blood clots. I hope her platelet count comes up soon. :D