17 yo daughter with ITP

Hi all! My 17 yo daughter has ITP. I am posting here rather than the parents board since it seemed to be mostly parents of toddlers and younger children there.

She was diagnosed in June of 2013 (asymptomatic, routine bloodwork) with a count of 50. Repeat 2 months later was 40. The plan was basically to monitor her counts and if they stayed stable lengthen the intervals between checks. This past May her count dropped to 30 and continued to drop. By August it was 7. She had some moderate bruising, especially her arms and legs, and her periods became very heavy. She was also tired and having headaches, but we thought that was because it was summer and she was staying up too late and not getting enough sleep. She had a bone marrow biopsy and a course of IVGG. One week after the IVGG her count was 45, but the next week it was back to 10. When her count was up she was so much more animated and vibrant that I realized how much she had been dragging and tired. Her hemoglobin also dropped from its baseline of 13.5 -14 to about 11.2 during this time - the doctor felt from her heavy periods. She started on birth control pills in mid September to help alleviate her heavy periods. Her count went to 14 in mid September and in mid Oct is back to 8. Her hemoglobin is back to like 12.2.
The pediatric hematologist for now is waiting and watching. He would like to see her counts at a safer level, but is weighing the side effects of treatments verses how she is and feels now. She is bruised but no active bleeding. She is still tired but sleeps more and is not as " dragging" or have the headaches she had during the summer - it seems she felt worse when her count was dropping than she feels now when it is low but stable. He would not use IVGG again except to maybe rescue. I am really glad that they are not pushing steriods (too many side effects) or immunosuppression (especially now entering flu season). He said the next thing they would probably try is Win Rho, but he would like her hemoglobin closer to its baseline of 13.5 to 14 first. I do like the treat the child not the number approach.
My questions are basically about treatment. I see many people are treated at a higher platelet count. I am sure symptoms are in the decision, as well as lifestyle activity levels (she does not do contact sports). Also what are the long term experiences people have had? At the last appt the doctor said she may never be back in the 40 -50 range again. Considering the fact that she is not being treated I did not think she would bounce back that high at all. Do spontaneous remissions occur? I have not really asked the long term questions yet. When her counts were in the 40 to 50 range I was not overly concerned, but when they dropped low it was pretty frightening. I think I kept expecting blood to start spurting out, and I was worried because she just did not feel that well. But now I realize that she is pretty stable even with the low count, and am just hoping that our decision to watch for now does not result in complications.

Hello. I'm glad you found us. You seem to have a pretty good handle on all of this. I'm sure it's harder for parents than it is for the patient. I have three kids and I'd much rather have something happen to me than to any of them!

Yes, spontaneous remissions do happen. Not overnight, but I have seen it happen even years after ITP was diagnosed. Your daughter's doctor seems to be very calm and reassuring. That's good since I believe that patients (and parents) take their cue from the reactions of the doctor.

People do treat for many reasons. Some because the doctor panics and suggests it, some because they are new to ITP and feel that they have to do something, some treat because of an active lifestyle, and some treat because they have symptoms at higher counts than most others. I treated most of the time at around 20k, but sometimes let it go down to 10k. The treatments do take a toll after a time; if someone can get away with not treating and is comfortable with that, it's not a bad way to go. Just watch the symptoms. I can't tell you that everything will be fine as there is always a risk, but you are doing what you think is best and the doctor is on the same side. How can that be wrong?

My sister had ITP when she was 16. She went into remission a year after diagnosis and has been in remission since. She is 49 years old now.

Thanks Sandy. I am gald I found this group as well.

The doctors are vey calm and reassuring. Also very supportive and accessible. We have met three of the four pediatric hematologists since her counts dropped and she requires more follow up and they are all great (one of them is my pediatricians wife -we really like him as well). I am a nurse, my background is pediatrics ( none of the doctors are aware of that!). Most of my prior experience with ITP though is acute post viral or medication though, and was at least 10 years ago. And the treatment stratagies have changed, counts under 30 were always treated and her counts were considered a medical emergency. So it was a little scary to hear. But I agree with the treatment philosophy. All these meds have side effects and who knows how long they would be used. And the more I am reading, I sometimes think the treatment is worse than the disease.

Yes, they don't really consider low counts to be a medical emergency anymore. Of course, symptoms can be. Back when I was diagnosed in 1998, things were different too. There weren't nearly as many treatment choices and low counts were not acceptable. If things had been like they are now, I might be much better off. Treatments literally changed the course of my life.

Good luck with your daughter and please let me know how she is doing.

One good piece of information you have picked up is that IVIG will raise your daughter's counts, in a pinch. That's a valuable piece of information to hang on to, although I hope you never need it.

Steve

PS: hiya Sandi.

Back at ya, Steve!

Thank you Steve. That is what her doctor said also, at least we know it would raise her counts if needed.

She has to go for repeat labs within the next week. I doubt her count is higher, before she had numerous small bruises. Now she has numerous medium size bruises. Interesting also she has dark circles under her eyes that I don't remember her having before her counts started dropping, however it could also be that I am just on alert and more observant. She also gets tired more easily than before and is learning not to leave homework etc for "later" because she will just get really exhausted. But thankfully no active bleeding so we are still able to just watch.