Lupus?

[sosudden]

Anyone question Lupus in their child?

Lots of overlap in symptoms because it is autoimmune as well.

Daughter has developed a rash on her face that is suspicious of the malar “butterfly“ rash of lupus

She has had chest pain, “lung“ pain, shooting nerve pain, bouts of postural tachycardia, fatigue, joint pain, and more....

Her ANA index came back 2.5 times greater than normal.p

next step is rheumatologist....

[kos_mom]

DD has all those symptoms plus shortness of breath upon the slightest exertion, gait disturbance, swallowing problems, and frequent nausea/gastric probles in addition to the anxiety, OCD etc. There is a big overlap with lupus symptoms. A month ago DD's ANA was tested and was negative--no level was given on the results I received. But in any case, lupus is ruled out for the time being and so we are still searching for explanations. She had a tilt table test two years ago and didn't faint so POTS also seems ruled out. Anxiety can cause the postural tachycardia and stomach/breathing problems, but seems a stretch for other symptoms.

 

DD does not have new patient appointment with Dr. L until October 2. I did manage to very briefly to bring DD up when I took DS into Dr. L this week. She advised going to a neurologist to have an EMG and NCV/SSEP (think I have that right) done. But DD can only get into the neuro she recommended in December so I'm regrouping a bit to figure out an efficient and effective strategy to get this done--DD is really sick of doctors and so I want to avoid visits that do nothing to move this thing forward. (DD went to neurosurgeon this week to have an evaluation of an irregularity on a spinal MRI--he said he wasn't a specialist in that area of the spine and advised a consult with another neurosurgeon!!!)

 

Have you thought about taking your DD to a neurologist?

[philamom]

I went through all of this last fall/spring with my daughter (symptoms & labs). I would recommend checking for lyme with Igenex. The Western Blot cost $200 and can be submitted to insurance for reimbursement. PM me for more details on the lupus and if you would like the names of all the tests I ran through Quest. You could have your ped order them before your appt. with the Rheumy and save some time.

[sosudden]

thank you both for reply!

i live in kansas city area. saw neuro at childrens mercy - says he knows about pandas but doesnt treat there yet??? very frustrating as I also hate taking my dd to “useless“ dr appointments.

cardiologist believes her tachycardia was an autoimmune response and may happen again if triggered.

dd got ivig in feb with dr k in chicago. helped immensely - everything but the ocd improved pretty quickly.

after her 1st bad flare in june we consulted dr T. this is how we found the mycoplasma and 2 viruses but tbi were negative (not igenex tho). also high ana index....

i will pm you for those labs for sure!

to add to stress we r on vacation in florida and my mom has had a stroke... she is going to be ok but we r just waiting....

thank you and i will pm u soon

Laura

[EAMom]

Anyone question Lupus in their child?

Lots of overlap in symptoms because it is autoimmune as well.

Daughter has developed a rash on her face that is suspicious of the malar “butterfly“ rash of lupus

She has had chest pain, “lung“ pain, shooting nerve pain, bouts of postural tachycardia, fatigue, joint pain, and more....

Her ANA index came back 2.5 times greater than normal.p

next step is rheumatologist....

 

check for Lyme (Igenex).

 

A lot of those symptoms are Lyme (tick) symptoms, and I have read Lyme can also cause a positive ANA

 

how old is your dd?

Edited August 12, 2012 by EAMom

[minimaxwell]

Ditto on the MycoP testing.