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We took The Princess to her hematology and rheumatology appointments on Thursday.
I am SO thankful that Wendy mentioned having ANY lab work done with the same poke. The Princess woke up saying "No poke me!". When we went into our exam room at the hematology appointment I asked if they could talk with Rheumatology to see what labs they might want. They agreed that one poke would be best for her, and took care of getting the orders faxed over from the other building. So, we had ONE poke with FIVE vials of blood.
And thankfully, her platelets are UP still from the last round of IVIG. Her count was 127,000. We are hoping they stay up for a long while this time around. She follows up there again on the 30th of this month.
Then we wasted the day doing some shopping and having lunch with my mom. Then we rushed back to the children's hospital for the Rheuma appointment.
Part of the lab work requested earlier in the morning was to have The Princess pee in a cup. Yeah, that didn't happen. I tried and tried and tried. She wanted NOTHING to do with the darn cup. And at one point I had a very small amount collected and she decided to hold the cup herself. I thought this would be good and maybe she would actually cooperate. Nope. She dumped the little bit I had in the cup. I am sure if they still decide they want to run a urine sample we will try again, or just cath her!
Anyway, back to the appointment... The doctor came in and we went over The Princess' entire medical history. With a positive ANA screening, which was the test we did at the peds office, there is a chance she will develop Lupus. However, some people (I think she said 30%) test positive for the ANA test and never develop Lupus. Since we have other autoimmunity in the family (The Superhero), she will want to follow the Princess about every 6 months regardless of how the rest of the tests come out.
We are still waiting for the rest of the lab results. I am not even sure what tests she ran, but we will know more this week. She said we should have the results by Monday.
If all tests come back ok, then we will assume that for now The Princess does not have Lupus. If any of the tests come back positive, I am not sure what we do next exactly since I don't know what she tested for.
If The Princess does in fact have Lupus at this time, we would start a steroid treatment. The doctor is REALLY hoping we don't have to do this since the Princess is SO young. We are hoping the same.
Anyway, that is the update for today. No news is no news this time around.
I will do my best to update as soon as I get the results this week.
*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*
7 comments:
Praying for you and the Princess! (((Hugs)))
Thanks for the update! Glad they were able to just do one poke!! Keeping up the prayers, for sure!!
Poor sweatpea saying "no pokes" when she woke up...:o( I hope that no news turns into good news soon for you and your princess. HUGS to you!
Will pray, cross fingers and toes, hope your little one is negative for Lupus and continues to be. Diabetes is more than enough to deal with.
Praying for you guys as always. If there is anything I can do, just ask! I'm here.
I'm so sorry you guys are going through all of this. When a young child has an array of AI problems no one seems to know what to do about it... or even what it is. It's an incredibly frustrating process.
Emma's first positive ANA was at age three. It was only mildly elevated then, which they said was not significant. Over the years it has climbed to a very high titer of 1280. (Insanely high for a child, or anyone without SLE). Still no official diagnosis of Lupus, even though she meets all of the diagnostic criteria, plus some. Even her kidney disease is listed as probable lupus nephritis, but still... no diagnosis.
All I can say is that I'm so sorry. We have been living with this insanity for years and I would not wish it on my worst enemy. I will say that Emma is doing very well in spite of all of her health problems. She has the blanket diagnosis of autoimmune polyendocrine syndrome type 2 at this time, but even that doesn't cover it all.
I know that treatment of the individual health problems is more important than the "big picture" diagnosis, but it would be nice to know exactly why our kids seem to be falling apart.
Anyhow, as always, you guys are in our prayers!
Oh, and we always combine labs too! Last visit they pulled 11 tubes from one poke. That covered lots of doctors!
Hang in there!!
Don't worry about updating (although we all love and appreciate any news you can spare) and take care of yourself, Miss Tracy!
You are doing all you can and getting some awschum advice along the way. I will continue to hold your family in my prayers and ask Him to take away your fears.
Love you, girlie :)
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