well, I have some news....sort of - Lupus Message Board

IMMom · 02-14-2004, 10:33 PM

Hi Everyone,

My daughter, April had her appointment at Children's Hospital on Thursday with a pediatric Rheumy. She is leaning away from it being lupus, but is very concerned with how long she's been feeling bad and how bad she's been feeling. She wants to run a bunch of tests and have several other specialists come see her and run tests too. We go back to Seattle(200 miles away) on Monday afternoon so we can check her in to the hospital for 2-3 days for a multitude of tests and exams. The doctor said April's ANA was positive, but not very high and the other tests didn't match lupus and she said there are a few signs of lupus that most lupus patients have that April doesn't. One of those is something to do with a nerve around the eye. She said every lupus patient presents somewhat differently, so she's not totally ruling it out yet, but she's thinking it might be something else. She said with her symptoms, it could be alot of different things. She rattled off a few, then said she didn't really want to speculate because it could be one of so many things. One she did mention as a possibility though was Crohn's. That certainly fits with her abdominal pain, but from what I know of it, it doesn't really fit either. I guess we just wait a little longer. We are really thankful that they want to be thorough and don't want to wait any longer than neccessary. She would have started the testing Thursday evening, but they had no beds available and with the weekend and holiday, Tuesday is the soonest they could work it out. So we're home for a couple of days to repack and head back. I'll be staying with her in the hospital and my husband will be staying at the Ronald McDonald house and then coming during the day to the hospital. I am really praying for some answers from all of this. I'm also praying its something with, not only treatment, but a cure.
Hope you all have a great weekend!
Kim

AngelicBrat · 02-15-2004, 12:57 AM

Hi Kim!

ARGH!! How frustrating. To me, this is simple but I suppose all of the diseases have to be looked into to make sure they aren't missing something. I think that April does indeed have Lupus and also needs to be investigated for APS too.. she just fits both like a glove! I will pray on my end that this is all revealed soon so that April can feel better. I don't understand what that doctor meant with the eye? I wonder if she meant optic nerve inflammation.. but that is not common with Lupus patients. One thing mom told me to pass on to you is to just do the best you can every day. Doctor's don't know everything- that was a really cruel lesson I had to learn. Just put your faith elsewhere and it shall all work out. I promise you that! Things just seem to work out the way they were supposed to! I will just pray that it is revealed for you guys. That is the best prayer! I hope that this doctor does not rule out Lupus because that is what the big red flashing sign says! haha I am terrible I know Kim, but this brings back some flashbacks for me of when I was younger and had a heck of a time. If you would like, read my story.. its posted in this forum. I believe that I called it "My journey to a diagnosis". That is why I will pray extra hard that everything is worked out in due time and that April can get on with life soon. Being a teenager and sick is so awful.. please tell her that I understand okay? Love and hugs to both of you! Please keep in touch.. I was dying to hear how that appt went on Thursday!!

~Luv, Dana XO

AngelicBrat · 02-15-2004, 12:58 AM

P.S. Did the Rheumy do tests for APS? And also I must add that no 2 patients with Lupus present the same. That is what makes it so difficult! Many of us that have negative blood work are treated like nothing is wrong.. its a terrible world when even those with the blood work positive are treated like that too. I know that this will work out Kim, I am here anytime if you want to vent! Take care darlin!

~Luv, D

BarbaraH · 02-15-2004, 11:07 AM

Hi Kim,

I was diagnosed at age 48, but my 1st ANA was 1:40 (my rheumy said 1:39 or less is negative). I was not impressed! 6 weeks later, my symptoms were gone, but a recheck of my ANA came back at 1:800. Have April's ANA rechecked sometime soon.

Hope you get good answers this week.

Wishing you and April well - Barbara

IMMom · 02-15-2004, 01:39 PM

Hi Dana & Barbara,

My understanding is that they will rerun all of the lupus/autoimmune tests again to check how they are now. My home doctor had run the blood work for APS and it all came back negative as well. Again, my understanding is that those will also be redone. They are planning on having a gastrointerologist(sp?), an internist, a pathologist, a neuroligist, and the rheumy all see her and run a boatload of tests for about a thousand different things. They are being very aggressive in finding out what's going on, so I'm just hoping a praying for a diagnosis. No matter how bad or curable or treatable, the first step is a diagnosis so we know where to go from here. I can deal with almost anything so long as I know what I'm dealing with. The really frustrating thing has been not knowing. Which I'm sure you all can understand completely. Personally, I'm hoping they find another cause besides lupus that can actually be cured. But whatever it is, we just want to know. I know they also plan on doing a bone scan in the testing, that was one she definately mentioned along with a series of scans a tests dealing with the abdominal area and all the organs contained within. Although we were really hoping for some answers when we went Thursday, we are hopeful the answers will come from the testing planned. I'm not looking forward to seeing the bill for all of this though

but whatever the cost, its worth it if we get the answers. Thanks for your thoughts and prayers. I believe very stong in the power of prayer and am always thrilled to hear of people who care so much they are willing to sacrifice prayer for my child. We have an awesome support system between family, friends and our church family. Our church joined together in a day of fasting and prayer for April last Thursday, that touched our hearts so much that they would make such a sacrifice for her. I'll let you know what we find out when we get back. God bless and take care.
Kim