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03-13-2012, 06:07 AM
After searching, I came across this site and after reading some of the posts decided to join.
I am a 37 yr old mother of 2 (a boy, Dylan-14 and a girl, Ally-11). I have had a rough past six months. This past June my son then 13, started having some issues. His joints hurt and he was very tired. After SEVERAL blood tests and finally noticing that he was pale, his local dr. did some more extensive test and finally figured out that he most likely had some kind of autoimmune disease. Couldn't get in to see a pediatric nephrologist til Sept., and a Rhuematologist for 2 weeks after this test was done. At the end od August my mother-in-law had started to notice that he had been gaining weight and that he had gained 10 lbs. in a week. The next morning I called and got him in to the dr. that afternoon and later that evening we were in the er at the University of Madison Childrens hospital. He was diagnosed with SLE, lupus nephritis, and was also in kidney failure. He spent 7 weeks in the hospital. Missing his first quarter of his 8th grade yr. His dr's have said that he isn't a typical lupus case and in 20 yrs., she has NEVER had a case like him. He ended up with an infection in his pic line and then ended up with meningitis. Everything that could go wrong, did. It was hell.
He was released on Oct. 21, the day before our community held a benefit for him. He is back to school, finally full-time. He managed to get on the high honors roll for only being in school a quarter and then at state testing, received the highest score for his grade.
Glad to know that there is a place where I can vent or ask questions. Thanks!!!!
03-13-2012, 06:41 AM
Welcome to WHL! I'm somewhat new to the site as well (only been a member for a few months) and it's been absolutley amazing. When I joined, I was still waiting for a dx. I got a dx last month, and it's so helpful to talk to people who are dealing with the same things.
I'm so sorry to hear your son has SLE, but I'm glad he's doing better and back in school. I went 10 years waiting for a diagnosis, 8 of which were during my remainding years of school. It's so glad to hear he has your community's support.
All I can say is, don't hesitate to ask ANYTHING! There's almost always someone on the site, and even if they don't have advice for your question, they always have their support. We can all relate here. :)
03-13-2012, 06:54 AM
Thanks!!! There"s was a woman that came to my sons benefit and her daughter also has SLE and she's 30 min. from me. Gonna meet with her and have a "chat". I've been the strong one in our family through this, even though I'm a complete sap!!! People ask how I do it and I tell them I don't have a choice. If I melt down it's not gonna do my son any good.
03-13-2012, 12:36 PM
Welcome to WHL. First of all, let me tell you, how sorry I am, that your son has SLE.
I always tense up, at the thought of a child or teenager, having Lupus, because I know, how hard it is on me and I am 56.
How is his health now? Is he on any meds?
03-13-2012, 08:48 PM
woah sounds like it's been rough for your family!!!! But good on your son for doing so well at school despite everything.
How is your daughter handling all this? She's at a terrible age for all this to be going on.
03-13-2012, 09:04 PM
Welcome to WHL. Dylan has come through a lot this year. I know that this has been rough on you, too. I have five adult kids, and I know how tough it is to see your child having to deal with an illness.
As I read your post, I thought that Dylan's case sounded exactly like that of Nick Cannon. Do you know about him? He's a celebrity and the husband of Mariah Carey. They recently had beautiful twins. This January, Nick was hospitalized with kidney failure, which turned out to be Lupus Nephritis. Piers Morgan recently interviewed Nick on CNN. (You might be able to find the video online for Dylan to see.) Nick is my new hero. He is speaking out to make people aware of Lupus Nephritis, and he's been making a film to document his journey from getting sick to diagnosis to learning to live with a chronic illness. I would think that your son would really like seeing a celebrity who is dealing with the same thing that he is going through.
I wish you and your family luck. And please tell Dylan that a retired high school teacher said AWESOME JOB!
03-13-2012, 10:19 PM
hi leah and welcome.
i know the pain of knowing your young ones are sick, and you cannot do anything to help.
it hurts more than you being ill yourself.
please feel free to ask any questions you want.
we are here because we understand.
we exist because we need support too.
it only by each others help that any of us cope.
so welcome to your new cyber family.
03-14-2012, 05:12 AM
Thank you everyone!!! As for Dylan's med.... he's on A LOT yet. 4 blood pressure meds (lisinapril, labetalol, nifedipine and a clonidine patch), celcept, iron, vitamin D, penicillin, predisone (30mg for about another week then down to 20 mg), Hydroclorithizide, plaquinel, valcite, Tums, I think thats it. He just recently developed cateracts so they are lower the predisone. He also has atypical HUS. Which is micro blood clots in his kidneys. He gets a 800 mg infusion of steroids once a month now and for the HUS he gets an infusion of a drug called Soliris (eculizamab) also pantamodine. Other than all these drugs, he's doing well. No active Lupus right now!!!! His Lupus went from class 4 to class 2! He was on cytoxin but has been off that for a few months now. They hit him with the big guns right off the bat since his case is complicated.
As for my daughter, I think that she's still wanting attention. We spend alot of time dealing with Dylan and I think she feels left out. My husband doesn't see that, but when we were in the hospital Dylan received many gifts and she didn't get much. She was able to spend that time with Grandma though and my sister did a lot with her. We've had tremendous support!!! My mom had a heart transplant 11 years ago and she compares the meds she takes, which some are the same as Dylan's, to his. They both may take them but for different reasons and trying to get that through her head has been hard. She also just recently wanted me to take him for a second opinion. Kinda upset me. I told her that he was in, dare I say remission, and don't think she believed me.
I heard about Nick Cannon but haven't read the article that I've seen floating around FB. Thanks again!!!!
I just wanted to take a moment to say hello and welcome you to WHL. As hard as it is to have this disease it has to be harder watching your child suffer. We are all here for you as you travel down this path. Once again ... Welcome to the WHL family
03-14-2012, 07:07 AM
it would appear that the massive dose of medication has started to do the right thing.
as they start to reduce dylans meds.....
i hope the side effects will lessen to.
please keep us updated with his condition.
remember we are here when you need a shoulder or an ear.