Can you help me think this through.....new goals needed for dd

[*LC]

I'm so sorry to hear your daughter is not feeling better. I'm not sure from reading, has she received a definitive diagnosis of lupus or does the bloodwork just look like lupus? Didn't she recently have an ulcer, which was treated by antibiotics? 

 

If so & the lupus diagnosis isn't definite, I may have a bit of hope for you. My oldest was sick from December on during freshman year of high school. We were new to the area, and she didn't have a doctor. We went to a walk-in clinic (two or three times), they said it was viral. Finally, in April we had a holiday and I arranged for her to see her lifelong pediatrician, who knew she had only had 3 sick appointments in her whole life prior to that 5 months. She was diagnosed with an ulcer and given antibiotics. She didn't feel better right away like you frequently do with antibiotics. The pediatrician ran lots of blood tests knowing our visit was a one-time thing. In addition to the ulcer, one of the tests was off. She was sent to a hematologist/oncologist. 

 

During that meeting, the 2 doctors we met said they thought she had lupus. They strongly suggested she had it after they found out one of her grandmothers has lupus and that the other grandmother was thought to have it prior to being diagnosed with a different auto-immune disease by a different doctor. They even suggested she might have it no matter what the round of blood tests they performed showed. The blood tests showed no lupus/or whatever you call a negative blood test for lupus. The tests also showed she had never had mono; there was a test was suppose to show if you had ever had mono in your life. They ran 1,000s of dollars worth of tests, and everything came back normal/win-in normal ranges. Fast forward, she finally recovered - a month or two - from the ulcer and life went on normally. It has now been almost exactly 6 years, and she is healthy. 

[8filltheheart]

She had another appt with a specialist yesterday. His phrasing was all of her blood work shows extremely high levels of antibodies. Her blood work even before these past few weeks was already concerning (she already had an appt scheduled for more testing with her endocrinologist before she got so sick) bc of proteins and anemia. The rheumatologist is running even more tests--all more specific to SLE. One thing we had noticed all of the dr's doing but didn't know why until yesterday was they kept looking at the palms of her hands. He told us her hands don't have wrinkles and that is another indicator, in addition to swollen joints, etc.

 

Long story short, it is not definitively Lupus at this point, but he believes it is. :( She is now on all the same meds as her brother.

 

The good news is that he gave her permission to go to French camp. She has been so upset bc she didn't think she would be able to go. He put her on prednisone. I really appreciated his attitude toward her as a 16 yr old and not just a patient. At this point, I am just going to focus on getting through to the other side of camp.

[Catherine]

I can't necessarily add any more helpful comments WRT her plans 2-4 years down the line, but I did want to make a couple of suggestions about the medical issue.  Right now, there are some significant unknowns in your daughter's situation, the biggest being how she will respond to the medication and what the medium-term situation will be.  But very likely, it will be better than the situation *right now*.  

 

Given those realities, I think that choosing the path that involves the fewest firm decisions for the next 12 months makes the most sense.  She has managed a lot this past year, even given that she probably had raging Lupus, untempered by any drugs.  So there is some reason to believe that she will manage better this coming year than last.  But you cannot know that.  So I think it makes the most sense to do as much as possible without committing to DE or other firm-deadline classes and try to find resources that allow her work to be self-paced.  

 

Once she is more stable, hopefully by the end of another year, it should be easier for you and her to see what the new normal is and what she can reasonably take on.  

[8filltheheart]

I can't necessarily add any more helpful comments WRT her plans 2-4 years down the line, but I did want to make a couple of suggestions about the medical issue. Right now, there are some significant unknowns in your daughter's situation, the biggest being how she will respond to the medication and what the medium-term situation will be. But very likely, it will be better than the situation *right now*.

 

Given those realities, I think that choosing the path that involves the fewest firm decisions for the next 12 months makes the most sense. She has managed a lot this past year, even given that she probably had raging Lupus, untempered by any drugs. So there is some reason to believe that she will manage better this coming year than last. But you cannot know that. So I think it makes the most sense to do as much as possible without committing to DE or other firm-deadline classes and try to find resources that allow her work to be self-paced.

 

Once she is more stable, hopefully by the end of another year, it should be easier for you and her to see what the new normal is and what she can reasonably take on.

I think you are very right. This past yr has been exhausting for her. She has been extremely tired for months. We started off the school yr with them running adrenal function tests to see if that explained why she was so tired. She is a figure skater and we live in an area with very limited ice time. She would push herself to the limit and still have to get off the ice before her session was over. I look back over the yr and it is really amazing that she held herself together as well as she did.

[Catherine]

Yes-I think planning a semester at a time for the next year or 18 months would be ideal, but that is problematic when you are still in "high school" though it sounds like your daughter is well into college level already for many subjects. 

 

OTOH, the fact that she is accelerated means that she has the luxury of time.  There is no pressure to finish anything by the end of the next year.  If she falls "behind" it's only behind her absolute  potential, not the timetable of most high school kids.  So that is good.  

 

I am so sorry your daughter has to deal with something like lupus when she is so young.  (((hugs))) for both of you. Now at least, you know what you are dealing with.