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shisslak 12-15-2013 06:59 PM

Teen Daughter and Possible Lupus
 
Hi,

My daughter has been experiencing strange symptoms that have been getting worse.

My daughters symptoms began last year around with random forgetfulness. Her forgetfulness became so bad that I had her evaluated. The results of the testing showed that my daughter has developed a memory problem. She now has an individual education plan. Her memory issues has gotten so bad that I now have her school schedule on my phone calendar and I texted her during her classes to remind her to pass homework in and to write her assignments into her agenda.
New symptoms that have also developed is random bouts of extreme fatigue. She comes home from school and immediately falls into a deep sleep. She will sleep for two, three and sometimes four hours before I am able to wake her. This fatigue will last a few days. She has actually fallen asleep in school.
In addition to her random extreme fatigue, she has bouts of excessive hair loss. Daily my bathroom looks like a hair salon after a hair cut. The shower drain needs to be cleaned whenever she takes a shower.
The most frustrating symptom is her memory loss..this memory loss has gotten progressively worse. There are days that I feel like I am living with an Alzheimer patient. Just last week she lost her new laptop and today she left the oven on.
I have brought her to her primary care doctor a few times within the last year, he has perform the standard lab work and the only abnormal result was anemia. Follow up blood work is now normal.
A couple of weeks ago we returned to her primary care because I just really could not accept that there was not anything physically wrong with my daughter. I insisted that additional blood work be completed. I requested that an A1C and ANA be performed. My reason for this request was because my nephew was diagnosed with Type 1 diabetes at the age of 22 (my daughter is 17) and my sister in law was just recently diagnosed with Lupus.
The results of the A1C was 5.7 which is not considered high and the result of her ANA was positive. The lab automatically ran an additional test called ANA INF which apparently came back negative.
I am at a loss for what is happening with my daughter. She is now getting very frustrated and thinks that she is just crazy. She has lost friends over her illness because they do not understand her memory issue.
Her primary care is only referring her to a Rheumotologist because I insisted due to the positive ANA result. I will also say that her Leukocytes were also slightly elevated.
Her primary care things that my daughter symptoms are not physical but physiological because her father died a couple of years ago.
I would really be interested in any thoughts on my daughters symptoms and what questions I should be asking the Rheumotologist and what other blood test might be worth checking to rule in or out a diagnoses of Lupus.
Any help would be greatly appreciated.

ladybud 12-17-2013 09:34 AM

Re: Teen Daughter and Possible Lupus
 
Your daughter certainly could have lupus, as cognitive problems, anemia, white cell counts being high or low, anemia, hair loss and fatigue are all symptoms that can occur. You might review the sticky notes at the top of the lupus board here that show the criteria and alternative criteria for classifying lupus. I would make a list from those of what symptoms she has exhibited in past or now to show the rheum when she goes. You might also see a neurologist as well, and inquire about a medication called Namenda, used for Alzheimer's but also shows promise in cases of lupus where memory deficits are serious. That may help her memory improve, but if it is lupus, it needs treatment in general as well by the rheum.

VeeJ 12-18-2013 03:15 AM

Re: Teen Daughter and Possible Lupus
 
Hi. I'm sorry your daughter is having issues and sorry for your loss.

My understanding of ANA is that some labs first do the one that's enzyme linked (ELISA); it's simpler and cheaper to perform & can be automated. Then a lab might follow through, if need be, with a second type of ANA test that uses indirect immunofluorescence. ELISA doesn't detect certain autoantibodies. The second test is considered more reliable.

In people who do have lupus, I believe ANA can vacillate as flares come & go.

And it's possible, but rare, to have systemic lupus (SLE) with a consistently negative negative ANA, but this occurs only in approx. 3% to 5% of all patients. These patients test positive for an ANA :subtype called anti-Ro (aka SSA). This unique "subset" of lupus is sometimes called "Ro-lupus".

Negative ANA is also seen in the *more limited form* of *cutaneous-only* lupus, variously called Discoid Lupus (DLE) or Cutaneous Lupus.

Hair loss is also seen in anemia, yet I can appreciate why her primary also suspects stress, in that losing a parent is incredibly stressful. Hair loss is also seen in alopecia, an autoimmune that targets hair. Is her hair loss in patches, or is it diffuse? Have you examined her scalp for any signs of discoid lupus lesions? (Those can cause hair loss which can be permanent.) Does she get lots of UV exposure, either from sun or tanning parlors?

Re: fatigue and her need for extra sleep, depression is also a possibiity. On the days she comes home from school and sleeps 2-4 hours, has she slept well the night before, do you know?

Leukocytes can also elevate due to certain bacterial and viral infections, and in certain blood disorders (various leukemias), etc. Was a mono test done? And Lyme?

Was urinalysis done? (It's a cornerstone in assessing for lupus.)

Does she take any meds for anything?

Has her weight been stable?

Were thyroid levels tested? Hypothyroidism can cause fatigue and hair loss.

While I don't think anything in her symptoms and labs (so far) would be considered "exclusive to lupus", that's actually true of most of the problems seen in lupus! Therefore it makes sense to me, too, to try to get lupus ruled in/out. Once you read all the sticky posts, you could look for hardcovers containing far greater detail: most libraries have several authors available.

I hope this helps some as you line up questions. When is her rheum appointment? Let us know how it goes---but please feel free to post before that, meaning anytime the mood strikes, OK? Sending best wishes, Vee


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