Yep, it appears we have added ONE MORE THING to our plate. I am still trying to figure this one out.
During my back to school teacher meeting a couple of weeks ago I was explaining ITP to a co-worker. Another co-worker/friend overheard our conversation and asked if I had ever tested The Princess for Lupus. Her husband has Lupus and has several of the "issues" that The Princess has.
I brushed it off a little since we had back to school meetings and start of the school year craziness going on. Later that week I started thinking about and researching a little more into all of the "issues" The Princess deals with.
Could her low platelets be related to Lupus? Yes.
Could her odd breathing be related to Lupus? Yes.
Could her leg pain be related to Lupus? Yes.
Could her dysphagia be related to Lupus? Yes, apparently so.
Could her restlessness and seemingly lack of restful sleep for her entire life be related to Lupus? YES.
Could the fact that she FREAKS out when it is bright outside (Hello, AZ!) be related to Lupus? YES.
Even after reading all that I read, I did not think it could be possible. She seemed to have several of the "possible symptoms" of Lupus. All of those things combined point to Lupus. So, what is a worried mama to do? Take her in for blood work, of course.
Last Tuesday the 2nd I took her in to her pediatrician. I explained my new theory and since she knows us well, she did not question me asking her to test for Lupus. The nurse came in and drew the blood. We would have to wait about a week for the results.
Over the following weekend, while still waiting for the results I thought about it A LOT. We spent about an hour outside on Friday night while The Superhero had soccer camp. It was HOT. Hot is an understatement. It is August in AZ after all. The Princess DID NOT want to be outside AT ALL. She kept saying she wanted to leave. Then we went for ice cream afterward and she just sat there. It was very strange for her to just sit there. Staring into space. Not interested in her pink sherbert. Just not herself. It was weird. Photosensitivity, perhaps? Ugh.
The weekend came and went. Then it was Monday. I decided to call the peds office and see if the results were in yet. I knew it was almost a week, but not quite, so I might have to wait. The results were in. BUT, no one in the office that day could "interpret" the results until the next morning.
Then today both kids were acting "off" and our friend's kiddos all have strep throat. I decided to take mine in for throat swabs. Thankfully that was negative.
While we were there, I asked about her lab results. Our doctor is out of town. Our Nurse Practitioner was not there. Our normal nurse was also not there. The med student, who was working today with a different nurse pract. came in. She basically said "I have the results. They are positive. Are you seeing a rheumatologist?"
"Well, we are not sure what the next steps should be. Dr. F. usually sees her and knows her history, you should just follow up with her when she gets back next week. Would you like a copy of the results?"
Um, yes, I want the results. I will call a specialist myself!
I LOVE our docs office, but really, this was the worst experience when telling me lab results today. It did not make me feel better.
Before completely losing it, I called Wendy on my way out of the office. She is really good and helping me stay focused and not freak out. :-) (Thanks, Wendy!)
I then drove over to my mom's house. When I got there I looked up the number to the PCH rheumatology office and chose a doctor, then called and made an appointment for next Tuesday.
So, now we wait. I am anxious to see what they say about her results. I am anxious to know what our next steps will be. I am doing my best to have Faith that all of this is for a reason. Today I am struggling with this and all the "why us" questions. It will get better. It has to.
I will update next week. We see the hematologist on Thursday and the Rheumatologist on Tuesday. I am sure I will more than enough to say again after both appointments.
For now, I will just go off and cry. Sigh.
*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.*