Please pray, help if you can

I started getting suspicious a while ago that our medical symptoms were getting to be a lot alike.

Recently I had to take her to the ER, where they did some bloodwork, looked at her, and recommended a local pediatrician. They said to have her tested for lupus.

At almost exactly the same time, my neurologist told me he suspected lupus in me and did labs.

Both our tests our back.

Both of them are positive. Her ANA is 1:160, mine is 1:360. (they're supposed to be negative, and anything over 80, from what I understand, is really really bad)
Other tests are backing it up.
They're testing me for leukemia now, although Anna was already tested when she was younger and she was fine, so I'm not too concerned about that.

She's been referred to a pediatric rheumatologist. I've been referred to a regular one, but won't go until she's seen first.

The problem is that even though they put her as top priority, there are just no fast openings. I'm extremely concerned for Anna. A few years ago when we lived in Oregon, she started having her hands turn blue off and on. We figured it was a heart thing (she was born with a heart issue) and her pediatrician there basically blew it off. It's gradually become worse, and recently became VERY bad. They're now constantly mottled, and now they turn blackish and her feet are now involved. I'm worried about the tissue damage, and that she'll be losing fingers and toes if they don't get her in. Her tests also seem to indicate some kidney damage. I knew she had "crystals" formed when she was an infant, but was under the impression that it was a common thing in newborns and would go away. The poor kid doesn't KNOW what normal is as she's had issues prior to birth, so doesn't know to tell me half the things that are going on!

I don't know what to do. This needs prayer. We have health insurance (TriCare Prime) but it doesn't seem to make a difference...we were told there's only one pediatric rheumatologist in the state, and that he's very booked. So even putting her at high priority, we still don't have an appointment yet.

Prayer, advice, anything is appreciated. I'm just shocked that a kid can have such a serious issue in this country and not get care. With me being in the same boat healthwise, the stress of not being able to get her care is exacerbating my own issues. It's an insane, vicious thing.

 

Steven, we did take her to the ER. They didn't know what to do. It was one of the stupidest things ever. We waited for hours and hours, then they didn't have a clue. When the doctor did come in, her hands had gotten better to the point they were purple, but as we were leaving the hospital, they started turning black again. The nurse saw it and ran to get the doctor, but he was with another patient so she just said "come back if it doesn't get better." My husband and I both just looked at each other...we were IN THE HOSPITAL ER and it was HAPPENING and we couldn't get it looked at!
I don't know how good that hospital is though. That's a good idea though, to find out. I'll have to look for a hospital connected with a university. When I was in Ohio and dealing with her heart issue, we went to the Cleveland Clinic and she received outstanding care, and when in Oregon, she went to the same type of deal in Portland. They must have something similar in Oklahoma! (wow, I have something with living in states that begin with the letter O )

Annsni, she is 13 now. We do plan on seeing if the rheumo. doc that my neuro is referring too will just see both of us at once, or at least get Anna in there. There's a 6 month wait on adult ones, according to my doctor, but since my neurologist works with one, I was told the appointment would probably be done faster.

 

Yes it does, wow! Thanks! I had no idea the Cleveland Clinic would be ideal for this. If our insurance will cover her going to that state, it won't be much of an issue to get there and have a place to stay close to the hospital. She's still in their hospital system, so she won't even be considered a new patient, so that would cut down on waiting time.

 

Thank you! When I brought this problem to Sunday School, one of the people there told me to call him. He seems to know a rheumatologist...that's all I got as it was during requests and he was in the process of leaving, but I'll call him tomorrow and see exactly what's up.

 

Thank you. We're taking turns making phone calls right now to try to get something worked out.

We found out yeah, there is just one rheumo pediatric group...and the doctor she was referred to there was on years of probation for professional sexual misconduct and alcohol/drug abuse.
I THINK WE WILL BE LOOKING FOR SOMEONE ELSE.
But there's no other pediatric ones.
Why would someone like that still be licensed????!!!!! We'll have to see if a regular one will take her.

Okay...edited for update...she can see another person in that group instead of him. When I called, they said they were just about to call me. Her appointment isn't until the end of June, but we're on a call list in case there are cancellations.

 

We have the GP referral and now have an appointment, although it's in late June.

I called the Lupus foundation and did get a list of doctors in the state who deal with this. (not many) However, it seems that having insurance is WORSE in this case. There is a group that sees kids with this and it seems they do it pretty fast, but you have to be uninsured. I don't know what the quality of care is though. I thought about dropping the insurance, but that may not be wise considering her needs even prior to this latest. (it might even be illegal to drop it, who knows)

Since we did finally get an appointment, I think we'll stick with that, along with keeping a close eye on her and being in close contact with the pediatrician. It's tied in with the place I'll be going, so it will be good to have the doctors be able to interact. We're also on a "call list" so that if any appointments open up between now and her appointment time, we'll get a call to take her in earlier.

Thank you so much for your prayers. I'm so glad they at least set up the appointment for her. :thumbs: