"Not a textbook ITP kid" so they say

My son, Matix, 8 years old, was diagnosed in December 2012. Upon arriving at the ER his count was 1,000 on admission to the hospital. He was admitted because he was still wet bleeding. He received IVIG, which he had an allergic reaction and that was stopped. The next morning he had BMA and BX. Apparently the BMA and BX showed pancytopenia (low platelets, low RBC, low WBC). No leukemia cells, thank God! After the cells were examined and shown to be no leukemia, high dose Prednisone was started. By the next day his count was up to 25,000 and we were able to come home (the day before Christmas Eve ) We were scheduled to follow up with Hem/Onc in two weeks. His count then was in the 300,00's. I was very surprised, but happy at the same time. He had weekly draws that slowly came down to the 100,000's and then around 3 weeks after his admission he began bleeding again and had a count of 40,000. No treatment necessary. He went back up on his own to 80,000. We had already planned a trip to Disneyworld back in the summer for our kids and that is what they got for Christmas. The trip was planned for February. During this time since he was diagnosed Matix had not been the same child. He has had bone/joint pain, suppressed appetite, extreme fatigue, and mottled skin. I asked for a second opinion at a much larger facility several hours away from our home. I was told then that Matix did not fit the textbook for a child with ITP; however, they did think he had ITP. They ran several more blood tests on him there. We had another appointment with our regular Hem/Onc doctor to discuss the trip to Florida and a blood draw. Platelets were 136 so she said we were a go. One hour after landing in Florida Matix began having knee pain, fever, severe fatigue, and cried constantly. We had to go back to the room where I noticed immediately the petechiae and a very large hematoma on his hip. My heart sank. By the next morning he was covered in bruises, bloody blisters on his lip, and bloody nose from during the night. I called Hem/Onc and we started Amicar for the wet bleeding. He then started bleeding between every tooth in his mouth, which took around 30 minutes to stop the bleeding, all while taking the Amicar. Once back home we had an appointment scheduled for two weeks after our return. His count was 404....I was in disbelief. I even told them I did not believe that it was correct. Lab error, who knows, just didn't believe it. I was told then that he was on full release. He had no restrictions and could play football, etc. Two days later the fever and bone pain was back along with bleeding and petechiae. I called hem/onc and was told to get the CBC. His count was ZERO!!!! How in the world can you go from 404,000 to ZERO in a matter of 3 days. I feel like I am out in left field and not sure what to think about what is going on with my sweet boy. All they can tell me is "He is not a typical ITP case". What does this mean? Does anyone else out there have fluctuations that are this drastic? I am a nurse and have never really seen anyone fluctuate like this either. I came across this board and really wanted to reach out to others that know what I am going through. Any advise or suggestions would be greatly appreciated. Thanks in advance. Another worried Mama

I'm not a parent but I'm a spouse of someone who has had ITP for five years now. I couldn't read your post and not respond - I'm so sorry you're going through this. As our Hem said today, it is a very very frustrating disease for everyone (patients, family and Drs.). There is nothing typical about ITP. Everyone is different and there is no guaranteed fix.

In talking to others (not on this board) I have heard of huge fluctuations in a matter of days (350,000 to 0 in 2 days and then back up again within weeks).

I don't have any advice. But I have empathy and understanding of what you are going through. It's awful and in some ways I think it's tougher on the primary caregiver - it's never off the mind.

Thanks for the kind words of support. It is very hard and so confusing. I am on a platelet, petechiae, emotional rollercoaster. I have read several posts on here and notice that a lot of kids develop ITP and stay in the lower ranges. That has not been the case for us, so I wanted to reach out and see if there was anyone else out there like us. The doctors actually told us that normally if they see a count go up that high, usually it is over...not our case!!!

Mom:

Nothing is textbook about ITP. I wouldn't so much be concerned with the fluctuations, that will happen.

Question - has he always been treated when counts go up high or does that happen spontaneously?

Also, when he complains of joint pain, etc., has he just been on Prednisone?

We have only treated three times. First time was with IVIG in the hospital and he had an allergic reaction. After that we have used Prednisone, but only twice for short course of 4 days at high doses. We frequently use Amicar for wet bleeding, but that does not help the platelets (I am sure you already know that). He complains of joint pain every time his platelets drop, and no not when on Prednisone. His platelets will go up on their own, but as fast as they go up, the go down just as quickly. I try to look for a pattern but no such luck. I have figured out when a drop is coming because it always starts with low grade fever, 100-101, joint pain, and severe fatigue.

Matixsmom wrote: I have figured out when a drop is coming because it always starts with low grade fever, 100-101, joint pain, and severe fatigue.

Now that is not typical ITP. Fatigue, maybe, but not fever and joint pain. With the other CBC results a bit off, I think I'd be questioning things too.

Here is a list of other disorders that can also have low platelets as a symptom. I am not saying that your son has something else wrong other than ITP, but it's just something you might want to look into for peace of mind.

pdsa.org/resources/other-platelet-disorders.html

pdsa.org/resources/other-platelet-disorders.html#low-platelets-other