OK, for those of you who do not know, our little Karsten who jut turned 2 on Jan. 20 was diagnosed last July with a blood disorder called Idiopathic Thrombocytopenia Purpura (ITP). The Dr. said Idiopathic means they are idiots and do not fully know the reason some get it and others don't, Thrombocytopenia means low blood platelets, and Purpura means purple patches or spots. Basically Karsten woke up one morning and I noticed more bruises than usual and some funny purple/red pin point spots on various places on his body. We were in a hurry that morning, running late for a play date at the park so I didn't think too much of it. Just thought him and Kevin had played extra rough the day before. So off to the park we went. The kids had so much fun playing and were more than ready for naps when we got home. When Karsten woke up I brought him down stairs to change his diaper. When I pulled his pants off and lifted his shirt, It felt like my heart just stopped. I was in shock. Karsten was literally covered from head to toe, including the bottoms of his feet and palms of his hands with horrible bruises and those red spots that I learned are called Petechiae. I immediately called his pediatrician and rushed him in. They drew blood for tests and sent us home to wait for the results. The Dr. called late that night and said that the lab had messed up his sample and I needed to go in first thing in the morning and have it redrawn but she was pretty sure about the cause and cautioned us to be EXTREMELY careful that he did not even bump himself on anything. (Yah, try preventing that with 3 boys under 3 years old!) They re-did the blood test and determined his platelet level was at a 2, normal platelet levels are 250 - 450! At the same time I got the results for an ultrasound that Kayden had that morning also and getting the news on both of them at the same time was agonizing. I broke down sobbing in the Dr.'s office. She just put her arms around me and told me that I would get through this, I am a mom and stronger than I think I am. Those words gave me so much strength! They put Karsten on Steroids to bring his platelet levels up. It took longer than usual for them to work and at one point his levels went down to 1. Just to put it in perspective, you can not have any type of surgical procedure if your levels are down to 50, anything under 20 is considered dangerous and anything under 10 is considered critical and at risk for brain hemorrhage and internal bleeding. Life was pretty scary at our house for a while. The poor kid had to wear a helmet at all times unless he was asleep, and it was summer! When I think back to that day at the park, I just cringe. Any number of things at that park could have potentially taken his life. I remember him running on the sidewalk, getting ready to jump off of the playground equipment, even just rolling down a grassy hill. He definitely had an angel with him that day, there is no doubt in my mind. I have talked to several people including friends that are Dr.'s in other places and they cannot believe that they did not have him in the hospital through all this, it was that dangerous.
This is Karsten now. He has been off of the steroids for a little while now and his levels were at the high end of the normal range for several weeks so he went down to just having labs done once a month. This was a huge step for us since he had been having blood drawn every couple days at first then once he got above 20 went to once a week and did that for 5 months! Poor little guy got so good at giving blood, as long as he sat on mommy's lap and held his blanky he did awesome, even laughed sometimes when he would see the blood start to go up the tube! He was a real trooper through it all. His labs came back last week barely in the normal range, the lowest they have been since going off of the steroids. I got a little nervous but the Dr. is still happy with it so I feel a little better. The Dr. also told me that Karsten is in the higher risk category for having a relapse due to the fact that it took so long for him to respond to the steroids and how low his levels kept dropping even while on the steroids. Normally with his levels up to what they have been, she would have stopped the labs and monitoring by now with any other patient but because of his risk factors she wants to continue with the monthly labs for a while and then go to once every 3 months, once every 6 months, then once a year. All in all it was a reassuring visit even though I was a little surprised to find out about him being at a higher risk for a relapse.
This picture was taken that day at the park,
had he fallen off of that swing.......
This is Karsten about 2 weeks before being diagnosed
These were taken a few weeks after being diagnosed, while on the steroids and his levels were only at 3. He actually had a perfect hand print wrapped around his ankle, just from us holding his leg up when we changed his diaper.
This is Karsten now. He has been off of the steroids for a little while now and his levels were at the high end of the normal range for several weeks so he went down to just having labs done once a month. This was a huge step for us since he had been having blood drawn every couple days at first then once he got above 20 went to once a week and did that for 5 months! Poor little guy got so good at giving blood, as long as he sat on mommy's lap and held his blanky he did awesome, even laughed sometimes when he would see the blood start to go up the tube! He was a real trooper through it all. His labs came back last week barely in the normal range, the lowest they have been since going off of the steroids. I got a little nervous but the Dr. is still happy with it so I feel a little better. The Dr. also told me that Karsten is in the higher risk category for having a relapse due to the fact that it took so long for him to respond to the steroids and how low his levels kept dropping even while on the steroids. Normally with his levels up to what they have been, she would have stopped the labs and monitoring by now with any other patient but because of his risk factors she wants to continue with the monthly labs for a while and then go to once every 3 months, once every 6 months, then once a year. All in all it was a reassuring visit even though I was a little surprised to find out about him being at a higher risk for a relapse. We are now back to going about our lives as normal, however I will always have it in the back of my mind. I find myself at every diaper change, checking him and making mental notes about how many bruises he has and where they are. When he gets more than a couple I get that nervous feeling and think "oh no, please no". I know it is just me being paranoid but with everything we have been through, I just can't help it.
