Parent of Teen Just DX'd - Our Story

Good morning! My wife Tenia and I have built our family with special needs children both as foster kids and formally adopted 9. Life has turned out pretty well for those kids but with a lot of challenges. Tana is one of these kid's kids. her dad was KIA the middle east actions two weeks later she and her mom were in a serious car accident. mom was killed and Tana was the victim of a Traumatic brain Injury. We ended up being parents. Tana also developed a number of serious health problems ove the years since. Strangely enough among those was PsA. PsA is the same disease Ihave and the one that lead me to find Bens Friends. We are still dealing with conditions including most recently a shut down of her large bowel. Now we have another child.

Ariel the child I have joined this forum for just came to us this past April (Easter Sunday to be exact) Of all the children we have had over the years, she has by far had the worst life. we adopted he mom at age 9. By a pure miracle we got Mom through school and started in life. She had ariel at age 19 and simply because of her Bi-polar (now full blown schizophrenia) We tried adopting Ariel then but the system being what it was placed her with her "Dad" over the next few years she suffered unbelievable abuse both sexual and physical. She was in three residential treatment programs under the assumption she was the problem. In April we got a phone call from ariel wanting to know if she could borrow some money for a Motel room. Her dad had taken her to a town several hundred miles from their home and dumped her. Fortunatly I had some friends in that area who spent several hours searching for her, finally located her gat her fed cleaned up and on a 9 hour bus ride to our town. We picked her up just in time for Easter Brunch and our long hoped for "empty nest" got fuller.

Ariel fit in perfectly. We got her back into school, found tutors, pushed her set some expectations etc and she finished the year with a 4.0. Through that time things just didn't add up for both her mental and physical problems. In mid may she had a severe abdominal pain issue. The ER got her fixed and decided it was stress (made sense) started her on some reflux meds and there was some improvement. The problem was they just shrugged there shoulders when I asked them about the blood work which to me and my limited knowledge in the area indicated something far more sinister. We kept working through what appeared to me to be vasculitis and something they had dozens of explanations for "dehydration" possible STDs, and on went the list

Then the "rash" appeared joint pain, finally got back studies done showing some pretty messed up SIs and lower spinal fusion. The passed it off to physical abuse. The dowager hump they called "Scoliosis" even though it was too high. Having some influence in the Hospital they expaned their studies and finally agreed we were dealing with some kind of Auto-immune. The working DX was Ankylosing Spondylitis. Fortunately that is something I have and have had since my 20's. It didn't fit.

I finally got them to look at the "mental" issues and behaviors. and once again they expanded the studies. Without going into more detail Yesterday at 3:00 the word came down that there was little doubt that it was as I had been telling them for several months it was SLE complicated with Vasculitis and some Kidney involvement. While it was really no surprise, it was a punch in the gut to me, like I have never had. (and if you remember the first part of this drawn out story we have had some pretty good punches.

In a few hours Ariel and I are leaving for a daddy time back-pack to a great fishing lake a few miles back of out house (we live on the edge od a wilderness area) Ariel loves fishing. My intent was to break the news. In a nearly all-night "discussion my wife, the greatest partner ever, was adamant that we give her some more time, and that this has-been medical mechanic let the doctors be the doctor. Its good advice, I know, but I hate HATE giving up the control. All I see is everything that needs done before school starts. Meds started, 504 plan, exercise plan, weight loss plan (she 5'2" and 200 pounds) I KNOW how to fight and want to teach her the same. Tenia says we have time and we need to put together "family" first. I'm not sure at 17 and disease described as severe we have time. My rheumy buddy says we can't radically change the outcome by taking time. To me that is almost like giving up before we start.

What think you all? You are the real experts here. I'm a scientist, My wife the gentle soul, and I have no clue what Ariel is except I have NEVER seen a more resilient fighter. I am terrified that this could be the straw that breaks the camels back. Maybe time to gird up IS the right approach???

good morning. first of all hats off to you for being such a strong pillar for your family and especially for Ariel.I understand this is not an easy situation for you to break the news, but it is important for her to know what ails her and that she has your complete support. she must learn and accept her limits and understand that things are not going to be the same as they were before. There must be lifestyle changes, medication, side effects of those medications and what not. But she must know that you and your wife are there for her at each step.

SLE may be a serious condition, but it is not the end of the world either. I learned this the hard way, but I know sitting and mourning over it won't change anything. I suggest you to break the news as soon as you get a confirmation from the rheumy. Encourage her to educate herself about SLE and if she want someone to talk to, we are right here. And the most important part, life may be a lot more harder than before, but it still is as beautiful as it was. Giving up is not an option. So buckle up both of you.

Hope this helps. Good luck.

Hey TNTLamb.. first, I want to welcome you to this community! It is always an awesome thing when caretakers or people who are affected by someone with Lupus joins. Second, thank you for sharing your story.. it's hard opening up and letting people in, but that is one of the only ways to understand what people are truly going through.

Now in regards to Ariel, I don't think there is ever going to be the "right time" to tell her, but I do feel, the better the sooner. I would tell her as soon as possible. I wouldn't look at this as something that would hinder putting the family together first, but look at it as something that can help contribute to that! In reality, Ariel's diagnosis seems like it would be a learning experience for everyone, and if something unexpected were to happen due to her Lupus, it is important for everyone to understand what is going on with her. Also, Lupus will definitely have an impact on her life, that makes it better for her to know. She will need to find out what triggers her to not feeling well and flaring up, and the only way for her to realize that is for her to know what she is really dealing with, including stress, sun/heat, fatigue from lack of rest, etc. There are a lot of resources out there that also provide information, one of the best I found being, that she can look up info once you guys tell her she can look into (or even you). Good luck with everything, and hopefully she joins us here too once you guys tell her! Best wishes!!!