Our lives had basically been put on hold. We knew that Emily would end up at the hospital inpatient for a while, but we were not sure when. We had hoped to see a doctor, and that they would keep her, last Wednesday when we went for her meds. They didn't have a chance that day because they were very overbooked. The doctor running the clinic is only there once a week. Emily was devastated. It's a bad sign when your child actually wants to stay at the hospital. Especially when said child is the type that never complains. I spent the days following refusing to unpack, and not wanting to plan anything.
My oldest debated whether or not she had an ear infection. One day she would want to see a doctor, and the next she felt fine, only to feel badly again the next. My days were pretty booked up. I had finally gotten around to scheduling a well-check for myself. It had been 5 years!!! I didn't think it had been that long. While I was there they found a lump, which of course ended up with a mammogram for the next morning. I had school stuff to turn in, other paperwork to do, and now my own health concerns. I actually wasn't very concerned until I got there. They scanned, then they re-scanned. Then they performed an ultrasound. Thankfully, I have cysts but not cancerous. After I left that clinic that day, I ran to school, did a bunch of errands, and finally got home to find that Emily felt worse. We had already scheduled a pedi appointment, so we went there. We stumped the ARNP. She didn't know what to do, but she sent us for chest x-rays in case it was due to pneumonia going undetected. After doing the x-rays we went home. She had already been asking to sleep in our bed over several days before. One night I just pulled out the sleeper sofa. Hate that thing.
After we put the kids to bed Tuesday night, Emily decided it was time to go to the ER. Despite being mostly packed, it still took a while to get us out. To show you how much of a crazy house this can be, my son's ankle had started to hurt earlier in the day. He is over-exaggeratedly limping around the house. He tells Emily as we are packing up to take her to the ER that he is in the worst pain ever that she couldn't even imagine. Okay. We got to the ER around 2 AM. We wanted to go where her rheumy is because we felt sure that all of her problems were rheumatalogical. This time it was her joints, her muscles, and her chest/ breathing that was bothering her. They ordered an EKG, chest x-ray, and ultrasound of her liver, kidneys and bladder, and of course they did a urine test. Apparently she has kidney stones. They found traces of blood in her urine. We were unable to see nephrology over the next few days, but we were also told that the best nephrologist is at a different hospital.
Because it is what she wanted, I asked the ER if she could be admitted. They ran it by rheumatology. We have been going there since October of 2010, and we have never asked for anything out of the norm, which is likely why they agreed to it. Her labs look perfect. That's stupid. True, but stupid! I have spoken to a LOT of parents of patients, and patients as well that have said that many times when they are in a flare the labs look great. Usually the doctors don't understand that, but it is true. Because her labs looked so good her doctor thinks that her pain is caused by Pain Amplification Syndrome. Perhaps there is some truth to it, but I really, really think this is a flare- her first since we started going there. He sent in a physical therapist to do a CMAS (Childhood Myositis Assessment). I asked the PT about how her score was. She said "about 20 out of 50". Her neck muscles seem strong to me, but she can only keep her head & arms up for about ten seconds, and she was afraid to lay down because it hurt too much. I know the signs with her. The red spots had started to come back on her hands, two different types. She had the vasculitis "hot spots", and the smaller red dots that she gets with Dermatomyositis. Her elbows are pink again at the tips. Her knees are pink. This is a flare. Most importantly, not only did she have trouble holding a toothbrush and walking, she told me how badly her fatigue was affecting her. The fatigue was getting worse daily. I guess that we all disagree at some point, and I totally love and respect all of our rheumies, so we agreed to disagree. :) I know that he sees a lot of teens that have pain amplification. He seems to think that is where she is headed because of her age. I know her well, and I have (obviously) seen her go through everything. She has always taken it well. I have some theories.
She started to get the headaches when we started CellCept. She adjusted after about 2 months, and the headaches went away. When we started Orencia, the headaches came back, but only for a while. When we switched to Actemra, not only did they come back but every infusion saw a pain increase with the headaches. While one would likely assume when reading Actemra's side effects that headaches would be isolated to around the date of infusion, what if that isn't what they mean? That could solve that. We discussed going back to Remicade. Emily is thrilled. This is my bad: judging by the way she was acting towards the end of Remicade, I felt it wasn't working as well. I saw her in the bath constantly, something she usually did only when she was hurting. She is resistant to change on almost everything. I thought she didn't want to change because she didn't want to try something new. Apparently it really worked.
She said that she felt better almost right away after starting the Remicade. It is likely more because she had three days of IV steroids, combined with Toradol (a strong NSAID) around the clock the three days, but regardless her pain has gone from a 9 down to a 4 today at home all day.
So, right there we need to find a nephrologist, hopefully the one he wants us to see. He wants her to see pain management because of her age and how they usually deal with pain badly. He wants her to see a psychologist, because she always seems so sweet and even, and she has never gotten nasty, mean, angry, or moody. And I mentioned endocrinologist.
Thanks (again!) to KM for bringing this up. Her son had many similar problems, from lack of growth due to steroids, "something" showing on the MRI, and possible amplified pain. She explained that (and I apologize if I don't get this 100% right) when the body is not growing right, the cells do not multiply as quickly as they should. Those cells help the body to heal, thereby reducing pain. IE: if one is not growing, not only is their body out of whack but their pain can be greater because it does not have what it needs to heal. I explained this, and the fact that it allowed her son to get off of a considerable amount of medicines! If we have to add something natural to get off of something(s) unnatural, it is well worth trying. So we are looking for 4 new doctors. Apparently pediatric endocrinologists are hard to find also, or we would have seen one while we were inpatient. At least I feel like we are back on the right road, and we will hopefully be back up soon. One thing that was beautiful was having so many people check up on us while we were inpatient via phone call, text or Facebook messages. Thank you all for your love & support!
One last note- I had gotten the camp email saying that she was placed on a waiting list because she had already been to summer camp several times. She was devastated at first, but she decided that since they could call at any time, she may have a chance. The following week I received a call from camp. Due to the severity of her disease they thought that she needed to go anyway! I tell you, that was exactly what she needed. She needed something wonderful to look forward to. Thank you, Camp Boggy Creek!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!
*I apologize in advance for anything that doesn't make sense. I worked a long day, and it is now past my bedtime, not to mention it is a LOT to process. Back to work in the morning! Have a fantastic day! :)
