Omg I’m soo sorry. You just confirmed for me that I will definitely make appointments for my daughters. My older daughter has Lyme disease and complains all the time. She’s a little out of control right now…she relapsed on drugs again. My 13 yo has started complaining also recently…headaches, achey and now her knee is really bothering her. We are on vacation besides. I’m definitely going to call when I get home.
Please keep us updated on what your rheumy says. That’s wonderful that he has agreed to see her. I do believe early intervention is best.
An IEP (individualized education plan) IS a wonderful idea. Both of my older children had them for different reasons (learning disability and severe anxiety). It will help accommodate your daughters needs and make the teachers aware that she is not just being lazy or distracted.
Hi Jen,
It is terrifing knowing your kids have this but i would get them checked, mine came from birth and my Dermo said tell your siblings to get tested and mu youngest sister did and came in positive.
Also Lyme disease, Lupus and fibro all stem from the same gene besides being inherited.
Best of luck mate :)
Hello Jen
I am catching up on post. I am so glad you had her tested. Hopefully she will be able to start treatment soon. Please keep us posted.
Hello Amy,
Hows things with your daughter besides yourself...update we please when you can.
Hugs Terri :)
I’m hanging in there. Aches and pains but bearable. Headed to dermatologist to check out rash. Daughters feet hurting pretty bad. Waiting on her appointment.
Surely if it is lupus, the earlier detection the better? My Mother was diagnosed with MS many years ago, and yet she has all the same symptoms as I do with lupus. It saddens me that Mum has been (as I now assume) incorrectly treated all of these years, no wonder her medication never made any difference to her illness. It also irritates me that I had to go through so much before gaining a definite diagnosis myself, simply because Mum was likely incorrectly diagnosed all those years ago.
Don't hesitate to take your daughter for testing. You would surely be doing her a favour if her ANA labs do present as you suspect and treatment and monitoring can begin so early in the piece.
That is my opinion as the mother of 4 anyhow. Best of luck and fingers crossed for your daughter. I sure hope it is something totally different and easily treated, for the sake of the both of you.
We have a rhuematologist appointment next Thursday. Her feet have been in a lot of pain and now her hands too.
Waiting really does suck! I had to get my daughter from school this morning because her pain was unbearable. Called the rhuemy to see if she could possibly get a steroid shot while waiting on labs to come back. Now waiting on his nurse to call me back! Any tips on how to help her with this pain? I am already giving her 600 mg ibuprofen several times a day. I'm so ready for her to get some relief!
If I don't hear back from rhuematologist I may have to see if her PCP can see her or go to the after hours clinic this afternoon. I hate seeing her in pain!
Great! He wants to wait on the remaining labs to come back because whats back so far doesn't indicate any active lupus activity. Waiting on the more specific ANA labs before he will do anything! Frustrated!!!!!
Well the labs are all back. ANA still positive with 1:1280 homogeneous and 1:40 speckled patterns. The more specific antibody tests showed normal. But due to her symptoms and positive ANA he is starting plaquenil today. I have been on it for almost 2 years now and can’t remember how long it took for me to get relief. Anyone else recall?
I didn’t get any relief from plaquenil. He had switched me to aralen but will be changing that also now to cellcept next time. I think I remember him saying that it could take up to 2 months to get father full benefit from it though. (Another wait n see…I know!) very frustrating to say the least. But thankfully you are way ahead of things as far as treatment with her labs coming back. Hopefully they will be able to get on this right away. Please continue to keep us posted.