Thursday, April 23, 2015

Life With/Life Without: Idiopathic Thrombocytopenic Purpura (ITP)

Now that is a mouthful. Suffice it to say that from here on, I will take the easy route and just call it ITP. Before this past Tuesday, I'd never even heard of it. Here it is Thursday, and I've already heard far too much of it. I would like to be greedy with it, and keep it all for myself, but unfortunately, the diagnosis is not my own, but Landry's. 



I really think this started last week, or maybe even the week before. He's by far the fairer of he and Ryli, and with the weather getting progressively nicer, the kids were outside playing after the older neighborhood kids got home from school til they went in at night. Riding bikes, trikes, and scooters, roughhousing, playing on the playground; I chalked all the bruises up to him being a nearly four year old daredevil. His shenanigans also produced a few split lips and a toe that he seemed to be trying to stub to a bloody pulp. Accidents happen, right?




Then, Monday night rolled around. The kids played so hard outside chasing bubbles from Ms. Nicole's bubble machine that they curled up watching "Inspector Gadget" on Netflix before an episode had finished. I took advantage and decided to take a nice, leisurely, hot bath, all by myself. That proved short lived, as Landry was soon standing in the doorway stripping down. Honestly, I think that boy could hear a running bath from a mile away. 




As he took off his shirt, I first laid eyes on the spread of petechiae across his chest, just under his ribcage. I got out and dressed, and he jumped in without a care in the world. I asked him if something had happened, and he didn't really seemed concerned. I got him out of the tub and snapped a few pictures, which I sent to GrandmaMom, asking for her opinion. I was at that time feeling pretty lucky to have a nurse for a mom. 




She texted back that I needed to get it checked out. We went to bed, and I called the kids' pediatrician first thing Tuesday morning. We got a 2:00 appointment, and by 11:00, we were off on a series of buses. 




The regular pediatrician was out on vacation, but the fill in was nice. She gave Landry a thorough check and said that we'd need to go have labs drawn. She brought us the paperwork, and we set off on the walk to Lab Corp. As we walked, I read the work order for the labs, pausing to text my mom "What is ITP? The pedi wrote it in the diagnosis code?".She answered back the long form of the name, mentioned something about a virus and complete recovery, and from that point, I was thinking that it wasn't that big of a deal.




Two vials of blood and an angry four year old later, resigned to the fact that there would be no answer to "What is going on?" until Wednesday morning, we started the long trek home. My mom had mentioned something about a virus, so I decided to be smart and not go to parenting class so as not to spread it.




Being curious, I referred to Dr. Google. That was a mistake and a blessing, I suppose. I learned that it is rather rare in children, as in only 4-8 cases per 100,000 in the U.S., and it was usual acute, lasting anywhere from 6-12 months typically, with anything stretching beyond that point being labeled as chronic. They don't know for certain what brings it about, but the body's immune system starts wiping out the platelets. Platelets help form clots, so without enough platelets comes bruises, petechiae, and purpura (loosely translated, you look like you've taken a beating). Problems getting injuries to stop bleeding becomes an issue. Normal platelet range is 150,000 to 450,000. The only thing that was most definitely worse in what I read that has a similar set of symptoms is leukemia. So, I went to bed Tuesday night hoping that if it was either, it was ITP.




I called the pediatrician's office first thing Wednesday morning. It was ITP; his platelet count was 18,000. She said she would refer him to a hematologist that could get us in right away. I told her that he had already been to one at Children's between finding out I had passed on my Factor V Leiden to Ryli and Landry and their ENT procedures. 




I called Children's, and at first I was told that the next available appointment was in mid-June. That's when I told the scheduler what his diagnosis was and what his platelet levels were. She put me on hold, then after a few minutes asked if I could be there by 2:00. I said no problem and got us all ready for another trip, this time by taxi.




Another vial of blood, and ITP was confirmed. On the bright side, his count had gone up to 25,000. Since there had been nothing aside from the bruises and their cousins, and he was on a bit of an upswing, it was decided that instead of treating, we would take it slow and see what happens. I have a letter for if he gets worse while we are out of town, and another for if he starts school or daycare while he's still dealing with this. It's still scary as hell, but life just is sometimes.




All goes well, and we go back to Children's on Monday for another CBC (complete blood count). Hopefully, he just gets better and doesn't need any steroids or IV treatments. It's just a lousy waiting game, with me wishing that it was me that had this to contend with and not one of my children. 




Before this week, I had never heard of ITP. Now, I get to try and explain to a not quite four year old that he can't do some things because I don't want him to get hurt. A stubborn three year old does not see reason very well at all. I've truthfully had more success explaining to Ryli why I need her to not do things that her brother shouldn't do. Maybe some "monkey see, monkey do" will pay off?




I'm fairly confident that this will not be the last that I write about ITP.