A has been looking very pale since Sunday. Yesterday, I noticed that her eyes are very red rimmed, even when she is not crying. Then, today, she has dark circles under her eyes. By this afternoon she almost looked yellow to me. Add to that the act that she got up for the day at 2:45 but was acting different than she usually does after pulling an almost all nighter. Usually she will still be very peppy and very energetic. She will be more prone to rages and tantrums, but she has a lot of energy. Today, she took 2 naps which is unheard of. And she remained lethargic all day long.
Finally at 2:30 I was overwhelmed with nerved. A didn’t have a fever but she just looked terrible. Your child shouldn’t look yellow! So I called the ped but she was full for the day. I left a message for the nurse to call me back. 10 minutes later, the office called back and they had squeezed us in at 4:30. We went in to meet with the ped and she looked at A, listened to my symptom list and when I asked how could a child look yellow? And could someone spontaneously get jaundice? She responded with “You can if your liver is failing or not working properly”. This had never occurred to me. However, the word that I was using to describe her was that she looks like something in her body is failing or is shutting down.
By this time it was 4:45 and our ped asked me if I thought A could handle another blood draw. It has only been 7 days since the last one. I completely agreed that we needed to do a blood draw but I didn’t think A was capable of handling it. But, after she said liver failure I decided A would have to handle it. I made the ped break the news to her and of course A started whimpering and crying immediately.
Luckily just before going to the ped’s office, we had stopped at Target to get all of our prescriptions. Uncle J told A she could pick out any toy that she wanted. A chose a doggie that came with a doctor kit so she could make him all better. We had the doggie with us when we went for the blood draw. A was still hysterical, but I think the doggie helped. My heart breaks when I watch her do that. And they weren’t able to get any blood on the first arm and had to go to her other arm. A was not impressed.
If something is wrong with her liver there seem to be 2 possible causes. One is all the medications we have been giving her lately. If that is the case, I am not that concerned because we can taper off of them and I would imagine we can fix her pretty quickly. What I am terrified of is that there is a deeper, underlying issue that is causing this that has nothing to do with the medications. That it is a problem in addition to the PANDAS. That scares me to death. My mind starts going to very dire circumstances that I don’t want to think about. The blood results are supposed to be back tonight but it is 9 pm and I still haven’t heard anything. This is extra stressful.