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Old 05-17-2007, 06:53 AM   #1
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Question Lupus in 14 year old...........NEED SUPPORT!!

hello,
My daughter was diagnosed almost 4 weeks ago with class 4 lupus and it hit ehr kidneys hard.........the ONLY symtom she had was she started puffing up for about 10 days and I took her to the Dr......they did blood work and EVERYTHING was out of wack.........we went to the hospital..........waited on the double-stranded DNA.,...had the biopsy of the kidney done to show it was class 4 but MINIMAL permenant damage........she had to be put on dialysis as her BUN was 117 and her creatinine was 2.6............after 3 weeks of high doses of steroid, cytoxin and 4 high blood pressure meds they sent us home for a few days..........we go back on Tues for another round of steroid and Cytoxin.....will be the 3rd round in 4 weeks..........yesterday at dialysis her BUN was UP again to 70 and her creatinine was all the way up to 5.1.
I am begging for any insite into anyone who has a daughter who has gone thru this and how long or if she was able to get off dialysis......... I am an emotional wreck but try very hard to be so strong for her............she is so scared and are we.
I appreciate any information anyone can give me.
Thanks!

 
Old 05-17-2007, 04:31 PM   #2
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Hi -

So sorry your daughter has this diagnosis and that it's causing so many problems so soon. I can only imagine your worry and concerns.

I'm not a doctor by a long shot, but wonder if a rheumatologist or especially a teaching hospital (where doctors train) would have the answers you need. Don't be afraid to corner the doctors you have and ask them your questions. It is their responsibility to make sure you and your daughter know and understand what they know.

If you haven't already done so, please look at the stickies at the top of this thread as that is excellent information. Auto-immune problems can mimic each other for a time, so as you read , do consider what seems to pertain to your daughter and what does not. Perhaps look at this information with your daugher. You can copy and print what's here to show your doctor, too. Highlight what is pertainent to your daughter's situation and show it to the doctors. They need to hear from you both what you've seen or noticed that can give them other clues.

Wishing your daughter well. Hugs to you!

Barbara
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Old 05-17-2007, 08:25 PM   #3
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Re: Lupus in 14 year old...........NEED SUPPORT!!

BarbaraH -- I am so sorry! I have a 14 year old daughter as well, but I am the sick one in the family, not her. I will be praying for both of you and that you will get great, knowledgeable doctors and great care at the hospital.

 
Old 05-18-2007, 10:56 AM   #4
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Hi -

Sparkle, I'm not the one with the sick daughter, it's FusionQueen, but I'm sure that God will direct your prayers to her daughter as you intend!

Cheers! Barbara
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Old 05-18-2007, 09:46 PM   #5
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Thumbs up Re: Lupus in 14 year old...........NEED SUPPORT!!

I am very sorry to hear about your daughter - I too, was diagnosed with Lupus Nephritis (renal/kidney failure) IV, 2 weeks after being diagnosed with Lupus and have recieved 5 treatments of Cytoxan - however, it made me so sick my Dr. is changing me from that and is going to try Cellcept to see if I do any better on that.

My concern for you and your daughter though, is she is already on dialysis - that is stage V(5). She has progressed from stage IV - stage V is when a patient has to have dialysis and/or transplant, and she is now on dialysis. My kidneys haven't worsened, have improved a little, but overall my health has been bad, my WBC plummetted to 500 due to the Cytoxan, I've been in an almost constant state of being in a flare - my Dr. calls me a 'very active' case...all I know is how I feel which isn't so great.

How much Cytoxan are they treating your daughter with?? My Dr. took a very agressive approach and gave me amounts way above normal - which probably saved me, but at the same time made me sick too - which is why he's having to change my regimen because my body just can't take anymore. My first dose was 1500mg, my second 1800mg, my third 2100mg, my fourth 2500mg, and my fifth 2900mg - which I was told was and could be a lethal dose (and which put me in the hospital after my immune system totally crashed). Although my Dr. told me he was going to go above the amount, I was honestly surprised by the other Dr.'s responses at the hospital I was admitted at to my Dr.'s amount of Cytoxan that he gave me. It was an eye opener in a lot of ways - I trust my Dr., but I am scared I'll be honest - he wants to stick with the Cytoxan but it's messed me up so bad he HAS to go with something else that is still being studied as far as Lupus patients and that is the Cellcept. So, for me it may be like taking a step forward and three back - only time will tell.

My thoughts and my prayers are with you and your daughter - I understand her fear to a certain extent - but even she has gone further than I have as far as being sick, and I know I have been scared in my own way...I can only imagine how she must feel, both physically AND mentally.
I am 33 - she is only 14 - she cannot possibly understand what is happening to her because I don't even think I understand what is still going on with myself - it's an emotional roller coaster that feels like it's out of control.

I hope and I pray she stabalizes soon, and that you get answers soon - she still has her whole life ahead of her and deserves to have it long and in good health. Keep us posted on how she is doing - this board has helped me in many ways - I read a lot more then I post - but it has been a place of support even if the posters didn't realize because I just read and didn't speak up. Take care, both of you are in my prayers....

 
Old 05-19-2007, 06:22 AM   #6
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Quote:
Originally Posted by raginstormcloud View Post
I am very sorry to hear about your daughter - I too, was diagnosed with Lupus Nephritis (renal/kidney failure) IV, 2 weeks after being diagnosed with Lupus and have recieved 5 treatments of Cytoxan - however, it made me so sick my Dr. is changing me from that and is going to try Cellcept to see if I do any better on that.

My concern for you and your daughter though, is she is already on dialysis - that is stage V(5). She has progressed from stage IV - stage V is when a patient has to have dialysis and/or transplant, and she is now on dialysis. My kidneys haven't worsened, have improved a little, but overall my health has been bad, my WBC plummetted to 500 due to the Cytoxan, I've been in an almost constant state of being in a flare - my Dr. calls me a 'very active' case...all I know is how I feel which isn't so great.

How much Cytoxan are they treating your daughter with?? My Dr. took a very agressive approach and gave me amounts way above normal - which probably saved me, but at the same time made me sick too - which is why he's having to change my regimen because my body just can't take anymore. My first dose was 1500mg, my second 1800mg, my third 2100mg, my fourth 2500mg, and my fifth 2900mg - which I was told was and could be a lethal dose (and which put me in the hospital after my immune system totally crashed). Although my Dr. told me he was going to go above the amount, I was honestly surprised by the other Dr.'s responses at the hospital I was admitted at to my Dr.'s amount of Cytoxan that he gave me. It was an eye opener in a lot of ways - I trust my Dr., but I am scared I'll be honest - he wants to stick with the Cytoxan but it's messed me up so bad he HAS to go with something else that is still being studied as far as Lupus patients and that is the Cellcept. So, for me it may be like taking a step forward and three back - only time will tell.

My thoughts and my prayers are with you and your daughter - I understand her fear to a certain extent - but even she has gone further than I have as far as being sick, and I know I have been scared in my own way...I can only imagine how she must feel, both physically AND mentally.
I am 33 - she is only 14 - she cannot possibly understand what is happening to her because I don't even think I understand what is still going on with myself - it's an emotional roller coaster that feels like it's out of control.

I hope and I pray she stabalizes soon, and that you get answers soon - she still has her whole life ahead of her and deserves to have it long and in good health. Keep us posted on how she is doing - this board has helped me in many ways - I read a lot more then I post - but it has been a place of support even if the posters didn't realize because I just read and didn't speak up. Take care, both of you are in my prayers....

Wow you have really been thru alot!! I know they started
my daughter on 275 of Cytoxin and her second dose was 350......it is per your body size.....One thing I can fine NOTHING on the internet is about the different classes.....where did you find that information......our DR told us class 5 was in a category all itself and treated with different meds..........but with all the dr lingo thrown at us over the last 4 weeks .....who knows what we year anymore. Dialysis is hopefully temporary!! Just until the kidneys kick in. Her biopsy says over 95% reversible! I am worried about her emotional state as well.........like you are saying it is so difficult at 30 but at 14......i wish I knew what she was thinkng at all times.
I wish you the best and Know you will get better. We have researched CellCept and think it has a wonderful track record and profile! I hope it is your magic bullet!

 
Old 05-19-2007, 09:24 AM   #7
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Re: Lupus in 14 year old...........NEED SUPPORT!!

That is true - Cytoxan is supposed to be per your body size - but my Dr. went above that...I have a friend here that is in the same stage as I am but never got more then 1500mg which is what I was started on (she was started on 500mg and I don't weigh 3 times more then her lol). According to my doctor and the doctor's at the hospital I was admitted to when my WBC crashed, 1800mg is actually the MOST recommended amount even with body size taken into account and believe me when I say taking those amounts for ME made me pretty sick - but I believe if I hadn't been treated as aggressively, and as aggressive as mine is I wouldn't have had the results I have had even though it crashed my immune system.

I'm posting some links here with some information I found useful - hopefully you will too. I'm still learning so much, and I was diagnosed in December of last year - I've been dealing with this for 5 months now. Hopefully, you'll get some better understanding and information from these - I'm still working on it myself.

[url]removed[/url]

[url]http://www.emedicine.com/med/topic1597.htm[/url] - this one breaks down the classes very well - my Dr. is the one that told me that a patient is considered stage V when dialysis and/or transplant is needed. If you read a little further down past the chart, it does go into that.

Last edited by moderator2; 05-19-2007 at 11:20 AM. Reason: posted commercial website

 
Old 05-26-2007, 12:07 AM   #8
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Smile Re: Lupus in 14 year old...........NEED SUPPORT!!

Hey hun, was wondering how your daughter is doing - has she improved any??? I've had her on my mind and have constantly been checking this post to see if you've updated yet - both of you are in my prayers...take care and God Bless!!!

 
Old 05-26-2007, 05:38 AM   #9
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Re: Lupus in 14 year old...........NEED SUPPORT!!

NO no improvemnt wiht the Kidneys....we just gone home from round 3 of steroids and cytoxin....she can not have any more for a month as she has had 3 doses in 4 weeks.........today we go for an ultrasound of the kidneys to see if there is any blood flow.....her origional biopsy showed 95% reversible and they are not rsponding to the meds and no one knows why. I pray the kidneys have not just stopped.........she does dialysis every other day right now. This has been just heart breaking for us....I was more worried about her life down the road no that the kidneys would not work.......they say they can come back if there is blood flow. No guarantees of anything and she is so sad! at 14 you should be having fun and she is puffed up her hair is falling out(they told me it would not)she has the hemo cath.....I just sit and cry when she is sleeping...........but stay very strong for her.
Wish us luck today on the ultrasound. I still feel they will come back!!

 
Old 05-26-2007, 06:37 AM   #10
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Re: Lupus in 14 year old...........NEED SUPPORT!!

(((((((((fusionqueen)))))))))),
In my opinion, there is nothing worse than having one of your children become teribly ill . I am with you in believing for the best outcome, and my prayers and thoughts are with you and your precious daughter. God Bless you both.

 
Old 05-26-2007, 08:29 AM   #11
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Fusion - I'm going to step out of bounds here for a little bit, but I'm going to give you my honest opinion - if my doctor hadn't been so aggressive I don't believe I would be here today...although it about did me in. Your daughter sounds to me like hers is very aggressive too - and it needs to be treated aggressivly. I'm sure your doctor is being precaucious, but I'd ask him to consult, if he hasn't already, with other doctors to see what kind of more aggressive treatment may be used, and go over the risks, etc. My doctor shocked a lot of other doctors by doing what he did - but he consulted with doctors at Vanderbilt (cancer center in Nashville), and had the guts to go for it. For all the hell I've been through, I'd do it all over again because again, I don't think I'd be here otherwise. Also, tell your daughter I've lost most of my hair too - don't worry about that, although without being a hypocrite easier said then done I know. I'd rather be bald and alive, then the alternative. But I won't lie - it is very difficult to look at myself in the mirror, I refuse to have my picture taken, and my self esteem is pretty low. I look nothing like I used to - I used to consider myself pretty - I've never been beautiful - but now I look like a bloated I don't know what. But I'm alive. That means as long as I am there is a chance down the road for this to get better - and that makes it worth it. My heart, thoughts and prayers go out to you both.

 
Old 06-03-2007, 09:54 PM   #12
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Dear Fusion, I was diagnosed with lupus and lupus nephritis when I was 13, way back in 1971. At that time the only treatment was prednisone and then azathiprone (sp?) Anyway, I don't think my kidneys were in quite as bad a shape as your daughters but other thigns were wrong and they told my mother that I would have died in a week if they hadn't figured out what was wrong with me. As you can tell by the time lapse I am still here and kicking! Well, i haven't done so well in the last few years but since my early 20's I started studying Chinese, lived in China in the 1980's, (not the smartest thing in some respects, but hey I survived!), got 2 Master's Degrees and have had a great life and still do. We can't know what is going on inside your daughter's head, but I think that sometimes my illness has been harder on my parents and other family members because they didn't know how I was feeling. That is not to say that I didn't have a lot to deal with and that I struggled somewhat with having to forgo somethings that other teens could do like anything that took some energy! But I did learn at a young age that not everyone is going to like you, life can be short and that you can do almost anything if you take it slowly and try to use your limited energy wisely. I don't know you or your daughter but I would say that let her talk about her illness if she wants to, seh may feel more comfortable talking to someone else or a support group for kids with chronic illness. And, if she doesn't want to talk about her health, let her do that too. I can only speak for myself, but I did not want to be defined as a person solely by lupus. I am an artist, a gardener, a good cook, a sister and a friend, and I happen to have lupus.

If your daughter would like to email me, please give her my address, I'd love to hear from her.

Ruth

 
Old 06-17-2007, 07:23 AM   #13
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Re: Lupus in 14 year old...........NEED SUPPORT!!

I thought I would just update you all.......We took our daughter from Omaha to Children's Memorial in Chicago. WOW are they they BEST of the BEST!! Here was to be on dialysis 3x a week for the summer and just "watch" to see what he kideys would do......our rheumy was going to mix cytoxin and methotetrate(sp?) on her( a no no we learned) ...........long story short.......she is OFF dialysis after only one week in Chicago......her kidneys are outputting over 2000 CC a day now and we have a plan in action. She will get Cytoxin once a month for 6 month plus a weekly 1 gram Steroid pulse but then lover..20mg a day steroid dosage....the pulse will be weekly then bu-weekly then monthly.....just depending on her labs. At 6 months she will get another kidney biopsy done to see where she is at then decide on more Cytoxin or cellcept as an option. I can NOT believe the difference from one Dr to another. We feel we are getting the best for our daughter and I would tell EVERYONE to get atleast 2 or 3 opinions as Lupus is a strange disease as we all know and every Dr will have a different plan and you need to find the one for you......We are amazed with no dialysis ....as the nephrologist here said her number were only improving from the dialysis not her......heck even her blood count is normal after a week an no Epogen!! We are on the right path and know it will be more expensive to travel to Chicago but there is no price you can put on my childs life or your own. We also know she is by no means out of the woods and she is on a ton of med for high blood pressure, plaquenil, ect but we are so happy to see her recovering!
I hope you are all doing better and this give you hope that there are some wonderful DR's out there.......just a phone call away!!
Hugs!!

 
Old 06-17-2007, 12:26 PM   #14
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Re: Lupus in 14 year old...........NEED SUPPORT!!

Fusion Queen,
Way to advocate for your daughter! I would imagine that they have seen more cases similar to hers in Chicago than they have in Omaha. I am relieved and happy to hear that your little girl is feeling/doing so much better, and hope she continues to improve ang goes into remission by the end of her treatment! God Bless

 
Old 06-17-2007, 03:35 PM   #15
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Re: Lupus in 14 year old...........NEED SUPPORT!!

fusionqueen, Just a quick note to say WHAT GOOD NEWS! I'm so glad to read about your daughter's improvement. My best wishes to all of you, sincerely, Vee

 
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