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Neicee99
03-08-2009, 10:38 PM
Hi Everyone,

I was officially diagnosed in 2005 or 2006 with SLE Lupus. I also have IBS, GERD, Relapsing Polychondritis, Fibromyalgia, scleritis, and a few other things. Recently I had my daughter tested for lupus because she has so many of the symptoms such as, extreme fatigue, she gets up to 12 mouth ulcers at a time, rosecea, SVT (heart), migraines, feels sick quite a bit, she is very cold, photosensitivity and may be lactose intolerant.

I took her to my rheumy and he did the blood work after talking to her and getting an idea as to how she felt. The blood work came back negative for the ANA but we all know that can happen. Originally, he told us that he did not think that she had it but could not say that she could get it later one. Three weeks later I had my appt with my rheumy and I brought up the fact the my daughter now has 12 mouth ulcers. He had them cultured at the first appt. to see if it was bacterial related and it was negative. He told me that he was afraid that they would come back and said maybe he should get her in the office and start her on an immunosuppressent. I am so worried about my daughter because she is a senior in high school and is going to college in August.

Does anyone have a child with lupus that shares the same or some of the same symptoms? My husband and I are concerned about putting her on such strong medication. I have been on so many immunosuppressents and I know how it can affect your body, good or bad.

Sorry to go on and on but I am so very worried. Thank you for reading my post.

Neicee

ashleybaby715
03-09-2009, 05:00 AM
i dont have any kids who have lupus, since im only sixteen lol, but i am a teenager who HAS SLE Lupus.
her symptoms are some what like mine were.
i never had any kind of mouth ulcers or and kind of rash.

i had EXTREME fatigue, loss of appiteite, i was cold all the time, my skin got pale, i just wasnt my happy go lucky self.

i went to the doctor just thinking it was low iron or something, and it turned out to be lupus. from there it just kinda went downhill before it got better. i was told i was anemic and that my protein levels were really low. i was hospitlized for 2 days because they found fluid around my heart and lungs, my liver also enlarged.

now that i am on prednisone, plaquinel and a few other meds.... im doing alot better.
i still make frequent visits to my rheumy and constant bloodwork to make sure that everything is still ok, or at least improving.
i also see a nephrologist now every 3 months to make sure that my kidneys dont get involved. cuz thats the last thing i want!!
i see a pulmonologist because lupus has affected my lungs as well.
it all sounds so bad, but i mean, im managing and just trying to live my normal teenager life. just a few minor setbacks.
i hope i helped you out and i wish you and your daughter the best :laugh:

mountaindreamer
03-09-2009, 05:44 AM
welcome neicee

so sorry to hear about your daughter. I am the mother of 3 grown children, and I believe that my son will eventually be diagnosed with lupus. I know there are a few parents on the forum who struggle with their children's health and lupus. It just breaks my heart to see these young people deal with all of this.

I am sure someone will be along soon, and i hope you all can provide comfort for each other. As far as meds go, did your rheumy say anything about giving the plaquenil about 6 months to work before starting on such severe meds such as immunsuppressents. I wish you all of the best.

Know we are here to help however we can.

phyllis

lilmisssunshine
03-29-2009, 07:56 PM
hi! my 7 yr old daughter and i have lupus. she's had a presumptive lupus diagnosis for 10 months before meeting her 4th ACR criteria in january of this yr. she was started on prednisone and methotrexate in august of 2008, though, so i definitely understand your worries!
i found a book that really helps me make decisions related to her care: it's called IT'S NOT JUST GROWING PAINS by Dr. Thomas J Lehman. Dr. Lehman is a leading pediatric rheumatologist practicing in New York. i have read this book cover to cover several times, and re-read the lupus section any and every time i question myself or the docs. it's a fantastic reference!
in terms of the meds, we've been very blessed in that she's tolerating her medications very well. she doesn't always like taking them, of course. the increase in unwanted hair growth (on her arms and back) has been the thing she thinks is the worst thing ever. we have many doctor's appointments, and even more blood tests, but this close monitoring has allowed us to maintain a somewhat normal lifestyle thusfar.
please feel free to ask me anything any time! i wish you and your daughter the very best, and send many hugs to you both!

rob
03-30-2009, 06:41 AM
Hi Niecee99,

I moved this thread to the "Lauri's Lounge" area, as it will be seen by more people here, than it would have in the "Finances/Disability" area. This way, you'll get more responses, and you'll get them faster as well.

Rob
Moderator

sick n tired
03-31-2009, 03:55 PM
Hey Neicee,

I have two daughters who are in the diagnosing stages...negative ana...but with many of the same symptoms one has the malor rash( she is 15 and a sophomore) and the other has problems with Reynaulds as well as pain etc she is 19 and in university, as well as another daughter, age 25 and engaged to be married, who is going in because her doc thinks she has Chrohns or ulcerative collitis...
I can understand your upset...wanting much better and then seeing some of the same things. My only hope is they will be treated earlier than I was and possibly be better off than you and I...that is a brighter side...I am almost feeling better thinking of it.:cute: