Experience with Lupus?

[Bullshot]

I have reason to be concerned for my 15yo daughter following various vague symptoms and now initial blood tests. Very early in looking into it but have high chromatin antibodies, low C4C, Reynoud’s syndrome in hands, chronic headaches and fatigue. She has no idea what is going on so far and we are looking for good rheumatologist this week. Worried and looking for any experiences / advice.

PMs welcome.

 

[Nick87]

No help with that. But hoping everything plays out as best it can. Good luck.

 

[Bullshot]

Sorry this isn’t hunting related

 

[Nick87]

Sorry this isn’t hunting related

No need to apologize for putting this here imo.

 

[Bigjay73]

Sorry this isn’t hunting related

Your family is HT related

 

[Wildabeest]

Good luck getting into a rheumatologist. I was told 6-9 months to get in assuming my blood work came back with positive rheumatoid markers. It didn’t, and I was basically told you’re SOL. Fortunately I had numerous contacts in the healthcare field and was able to get in. Condition is still undiagnosed. I basically have all the symptoms of a rheumatoid or autoimmune condition, but nothing in the testing they’ve done can pinpoint it. For awhile I was convinced that all the blood tests were the treatment - drain all my blood and see if that fixes it.

What I’ve learned through this whole ordeal over the past year is that medicine is an inexact science. I’ve also learned that you have to be your own strongest advocate. Best of luck to you and her.

 

[Bullshot]

Thank you, her primary doctor confirmed today what I already had unfortunately gleaned from the blood results - probable autoimmune disease (they didn't settle exclusively on lupus but that's where my research leads) and needs a specialist . We are lucky to be within an hour and a half of a leading pediatric hospital and associated centers and they have a robust lupus / rheumatology department. I was able to make an appointment for 2 and half weeks from now. It is going to be a long wait, but I know that good rest, nutrition, and stress reduction is key for her in any case so we will work in that in the meantime. Compared to a couple weeks ago, she is feeling pretty good and is active, she plays volleyball. We have not told her any results yet or our plans to see specialist. I am worried about that reaction and of scaring her, but we are going to have to cross that bridge soon, I don't want to keep too much from her, she is way too smart and gets very upset when she feels left out of things that affect her. Rightly so.

 

[Dave N]

Best of luck to her.

 

[Wildabeest]

Thank you, her primary doctor confirmed today what I already had unfortunately gleaned from the blood results - probable autoimmune disease (they didn't settle exclusively on lupus but that's where my research leads) and needs a specialist . We are lucky to be within an hour and a half of a leading pediatric hospital and associated centers and they have a robust lupus / rheumatology department. I was able to make an appointment for 2 and half weeks from now. It is going to be a long wait, but I know that good rest, nutrition, and stress reduction is key for her in any case so we will work in that in the meantime. Compared to a couple weeks ago, she is feeling pretty good and is active, she plays volleyball. We have not told her any results yet or our plans to see specialist. I am worried about that reaction and of scaring her, but we are going to have to cross that bridge soon, I don't want to keep too much from her, she is way too smart and gets very upset when she feels left out of things that affect her. Rightly so.

Sorry to hear about the test results, but encouraging news on getting into a specialist so quickly. I hope it all goes well.

 

[Nick87]

Hoping her appt with the specialist goes well. Medical stuff with kids is not fun or easy. Lots of good folks here if things get tough. Just sayin.

 

[Salmonchaser]

Wishing you the best possible outcome, kids are tough but stuff like this just doesn’t seem fair.

 

[Bullshot]

Thanks for the kind words of support, everyone. We’re gonna figure this out. I appreciate having a place to just talk this through, even a little. And I know there are others on HT who have gone through similar, and tragically some worse, things with their kids. My thoughts go out to anyone in that situation.

 

[Hem]

Wishing all the best.
My daughter fell ill when she was six. Spent 5 days in ICU before things were figured out. Eventual happy ending, but it damn near brought me to my knees. At the time, a friend's kid was battling cancer.
Kids getting sick is the absolute worst.
Stay strong.

 

[millerkiller77]

PM and prayers sent.

 

[CowboyLeroy]

I'll pray for her

 

[Wild Bill]

Best of luck! My cousin’s daughter has a disability that took a long while to diagnose. I’ve always admired her advocacy for her little girl. She has never accepted “wait and see” or “we aren’t sure” as acceptable answers. I’m sure there are doctors and nurses that hate her guts and peg her as a nuisance, but she is doing best for her daughter, which I applaud.
I’m sure you’ll do all you can for her. I wouldn’t be shy about using this thread as a venting tool if necessary, or for seeking information. HT is a great community.

 

[Nick87]

. She has never accepted “wait and see” or “we aren’t sure” as acceptable answers. I’m sure there are doctors and nurses that hate her guts and peg her as a nuisance, but she is doing best for her daughter, which I applaud.

Wife and I have found that if you aren't your best advocate you pretty much get tossed aside like a used condom. Sad, but it's what you have to do.

 

[mdhunter61]

Prayers up for your daughter and for you and your family. Kids are really resilient, but it sucks when they have things like this hurdle to tackle. Hoping the rheumatologist can work a good plan with you.

 

[Gulf of America]

No personal experience, but I have a friend that developed RA in college and a family friend who's daughter started developing autoimmune symptoms at like age 5. In both their cases, they worked with naturopaths on elimination diets and found that certain foods were triggering flares. My wife is a pharmacist (and spent several years working in the rheum clinic), so I definitely don't want to steer anyone away from sound medical advice. I would obviously listen to a rheumatologist first and foremost, and one of them is definitely also on a biologic to treat her condition, but it could be worth visiting with a naturopath to try to find any lifestyle triggers. Either way, praying for you and your family as you navigate this.

 

[huntid73]

My wife has systemic lupus with nephritis. She came down hard with it around 15-16 years old. Now we are both 35 and her doc said that her flare when she was a teenager while it caused major damage (they only caught it when she flared), will hopefully be her only major flare in her life. I say that to say there is HOPE!
My advice is this: if you have any doctors who use IV ozone therapy with UV in the area I would look into them. My wife found a doc here in east Idaho that does that, and has been able to manage and improve her blood work. I will say these treatments are expensive, but if you can get in to one of them, you may be able to head off any major flares before they arise.