I know that I wanted this blog to be a positive account, but I doubt this entry will be very positive.
A has had a horrible day and it is hard not to label this as a relapse. I am documenting this so that I can compare tomorrow to this. After this week’s 2 sleep incidents, I am thinking that along with today’s actions we have to be having a relapse. However, I don’t know how this is possible since we only did the IVIG 20 days ago. Aside from a relapse there are only 2 other explanations. The first is that she could be having a day called “turning back the pages” where her brain takes a step back in the healing process and will then right itself again in a few days. However, today was severe enough that I don’t see how that is the case. The other is that she was exposed to strep at the ped’s office yesterday when we were there.
Today’s symptoms again showed up hourly just like last month. They aren’t as severe as last month’s relapse, but they were devastating nonetheless.
- Treatment of the cat. When she is healthy she is very loving towards him and treats him appropriately. TOday she saw him and immediately whacked him with her stuffed animal. We haven’t seen this since pre-IVIG
- New sensory issues that weren’t there yesterday
- Inability to listen – it’s as if she isn’t inside herself when we are speaking to her
- Inability to deal with life’s situations – things send her into rages that most people are just able to deal with. This doesn’t happen when she is healthy.
- Needing to watch TV to soothe herself. TV watching has decreased greatly since the IVIG.
- OCD symptoms that weren’t present yesterday
This was incredibly hard on me because again, I wasn’t expecting it. I feel like I have spent the last 20 days preparing for the relapse so that I don’t get caught off guard and lose it like last time. I have a mental countdown going of when to start watching for signs of relapse and I had not anticipated it starting already. When the OCD symptom came on this afternoon I was overwhelmed by the sheer amount of physical and emotional energy it takes to take care of A when she is sick. It is a job that is every single second of every single day. I do not in any way feel that I have recovered enough from the last relapse to start dealing with this one. But now I am also adding in fear. How in the world could she possibly get sick again after only 20 days. This makes me think that something else could be/must be wrong as well. I will do another post with what the immunologist told our ped, but he thinks she sounds like she might have CNS Lupus. From what I have read, childhood Lupus is NOT a good thing. Of course, we can’t get in to see that guy for a month. At least. I don’t want to live in fear. But I am scared after the day we have had. I hope very much that we might sleep tonight. And that A will wake up tomorrow and be just fine.