Our ITP story... so far

Our experience started January 22nd, 2012.

My 4 1/2 year old son, Ryan, was recently diagnosed with ITP. In fact, he was diagnosed with it 1 week after my c-section for our newest baby. We've been dealing with this for almost 5 weeks now. We've had hospital stays at Johns Hopkins, countless blood draws, etc etc.

I've been handling it pretty well, but tonight I'm feeling overwhelmed. We go for another lab test on Friday and I am dreading it. Every single test since this has started, his numbers have gone down.
#1 - 7,000
#2 - 48,000 (after treatment 1st ivig)
#3 - 98,000 (24 hrs after treatment)
#4 - 47,000
#5 - 33,000
#6 - 30,000
#7 - 10,000 (and we're back to Johns Hopkins)
#8 - 36,000 (few hours after treatment)
#9 - 59,000 (last test , 24 hrs after treatment)
#10 - 228,000 (2/24/12) *added in edit
#11 - 35,000 (3/3/12) *added in edit
#12 - 30,000 (3/9/12)*added in edit
#13 - 23,000 (3/16/12) *added in edit

So Friday will be a week after treatment, that is the same time we saw the dip from 98,000 to 47,000 with the last treatment.

His hematologists tell me this is the norm for this disease. Please don't get me wrong, I believe them. They are the experts, afterall. They reassure me that he can still live a normal life if it is chronic, just with some restrictions (no football teams or wrestling teams -- not a big deal!)

Out of everything this could have been, this is most definitely the best case scenerio, or so I keep telling myself. At one point we didn't know if he had leukimia or something else. I am grateful beyond words that this is all it is. And yet, its still scary, and it still ...stinks.

So anyway, I'm having a hard time tonight remaining hopeful that this is acute. I'm dreading the Friday test because I'm so sure its going to be another drop. Not to mention I'm exhausted. Not even physically, but mentally/emotionally.

Ryan is still the same wild and wacky kid we all know and love. I will say that on Wednesday, the day before his 10,000 results, he was in a horrible mood. Very moody... was not acting himself at all.

I've been honest with Ryan every step of the way. I tell him the night before a blood draw. He likes it this way, he doesn't want to be surprised. He has been SUCH a trooper. I am so tired of breaking the bad news to him all the time. I just want to be able to give him some good news!


...and there I go feeling bad again, because this diagnosis really WAS good news, in the sense that something was obviously wrong. It could have been so much worse. Does that make sense? I mean, obviously having ITP isn't good news, but out of everythig it could have been... it was good news. Silver lining type of thinking...?

These stays at Hopkins have opened my eyes to so much. We've seen, and roomed with, so many sick kids, many of whom are critically ill. I'm still worrying about our last roommate, the 4 yr old that went from being responsive to not, in a 6 hr time frame. With a CAT scan showing something going on with his brain.

Its almost like I'm having a constant battle with myself. I let myself feel bad for Ryan, sorry that he has to go through this. Then I get mad at myself because I really should just be grateful that it isn't anything worse. I'm constantly having an internal struggle over this.

So, thank you for reading our story. It feels good to put it out there. I'm so glad to have found this website, I've gone the past 5 weeks feeling very alone, very scared, very angry... and now I found a place where people are going through the same thing. Hopefully now I won't feel so alone.

Brandi - everything you are feeling is normal. I don't have a child with ITP - I have had ITP, but I had the same feelings. Sooo glad it wasn't anything worse but geez, now I am stuck with this. I have been lucky though and have had a 7 year remission.

I also have a daughter who was diagnosed with an autoimmune disorder, so I do know the anger feeling. My daughter handled it much better than I did (although I never let her know just how upset I was).

The doctors are right - your son can live a normal life even if he is chronic. I wouldn't say you'd have to rule out sports; that's a pretty drastic statement since counts can go up with treatments and sometimes stay there for a while. Many people use that time to do the things they enjoy, even if they are chronic. I will tell you that I have been on this Forum since 1998 and many, many children have come and gone. Most have attained remission no matter how long they had been diagnosed or how hard it was for them to get counts up. There is always that hope.

IVIG is usually a pretty temporary treatment and isn't known to cause remissions. It can be a rescue treatment while you are waiting to see if the ITP is acute.

This has been a really bad time for this...just having had a baby. Sorry you had to go from such a joyous occasion to a frightful one! You have a great attitude and I know it's hard to find the positive but you're doing a great job!

Hey, Brandi -

Sorry you're going through this and I hope that Ryan's counts will go up soon.

Just wanted to say that I can relate to every single thing you said. My son, Brady, was diagnosed 10 years ago, when he was 5 years old. Many times I have been through the gratitude that it's "just" ITP to the anger that my child has any medical issue, to the guilt at seeing the critically sick kids in hospital.

Ryan can definitely have a normal, active life even with ITP. Brady has played baseball, soccer, basketball, gone skiing, wakeboarding etc. His hematologist even has a high schooler who plays football and just goes in for regular treatments/counts during the season. Over the years we have treated Brady before ski trips and other "dangerous" activities. He just completed a very physical season of Freshman basketball that probably should accurately be considered a "contact" sport at this point. The annoying part is that we have to think about counts before doing something, but it's doable. It has been two years since Brady had any treatment and his count is hanging in there at 65k. We really don't think about ITP that much at all any more.

Hopefully Ryan's ITP will be acute and this will soon be a distant memory. The beginning is so difficult, with the regular blood draws, constant worry, etc. but you sound like you're doing a great job. With a new baby and another child with a new diagnosis I don't think I'd be coherent!

Hang in there - we'll be keeping you and Ryan in our thoughts.

Brandi, reading your story seemed like I was reading my story! My daughter, Brooke (6 years old )was diagnosed in Nov, two weeks after I gave birth to little Madelynn. Brooke was admitted to the hospital and I was unable to stay with her overnight cause they wouldn't let Madelynn stay overnight. Her dad stayed with her and I would leave the hospital at about 10pm, drive the hour home with the baby, and sleep. Then get up at 4 am and drive the hour back to be there when Brooke woke up in the morning. She never even knew I wasn't there. It was most definitely the craziest time in my life. Following Brooke's IVIG treatment in Nov, her numbers went up for a week and then dropped again. They eventually dropped to 7k in Jan and she was back in the hospital for another treatment. Then we found out she is IgA deficient and IVIG could put her into shock so we ended up having to give her steroids. Her numbers are similar to Ryan's and go up with treatment and then a week or two later they drop back down. We have come to realize that her "normal" is anywhere between 20k and 70k.
Well, enough about Brooke. I just wanted to let you know that you are NOT alone! It's hard to learn how to handle this ITP roller coaster, but I think it gets easier with time. Also, the people here are very supportive and many have been dealing with ITP for YEARS! Just know that you are not alone. We are all at different spots on this crazy ride, but have all been going through the same thing. Remember to stay strong for your babies!

Thank you, everyone. His latest test (#10 on 2/24/12) was 228,000. His hematologist at Johns Hopkins was very happy with those numbers, and is giving him a vacation this week from blood tests. We'll go next week for another one to check his count again.

Well that's great! Was he treated after that last IVIG?

He's had 2 treatments. The last being after blood test #7, on Feb 17th.

Well, I noticed some bruising on Friday so I took him early for his cbc. His platelets are back down to 35,000

Hang in there. I battled ups and downs for 6 months before it leveled off and then began to rise.

When you get the results of a lower blood count it can feel so disheartening, but if you read other people's accounts my daughter's included, it does appear that some up and down is normal and that some treatments work better than others for different kids. Ivig did not work for us, but steroids did. Hang in there and keep posting!