Approximately two weeks ago my daughter was diagnosed with ITP. She had her first treatment a week ago, (ivig) with horrible side effects the next day. Her platelet count went from 14,000 to 101,000 after the treatment. Yesterday the count was at 44,000. So, I'm anticipating by this time next week after her next blood test, she will be so extremely low that they will have me rush her in for a treatment. This is all so new and scary,I just don't know what to do or think. Can anyone help me out there? I need some answers, and some information and someone to talk to who has been dealing with this.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2342
Hello. I'm sure you will get some help here. Sorry about your daughter's diagnosis.
I have ITP and my sister had ITP when she was 16 in 1982. She treated on and off for a year and went into remission, so that is a possibility for your daughter as well.
First of all, you can never guess what ITP is going to do. Sometimes we think counts are going to drop, only to find out that they didn't. IVIG isn't known for lasting very long, so I wouldn't depend on that for managing ITP. Takes too long and can have many side effects. If that is the only treatment her doctor suggests, I'd ask why and maybe get a second opinion.
Second, low counts are not always a medical emergency. In time, you learn to look at symptoms instead of the actual count. What symptoms does she have? Bruising and petechiae can be signs of low counts, but if there isn't any active bleeding, that is good and means that her body is handling the low counts okay. Is she seeing a hematologist?
ITP can be scary, but it can be managed. If a person is monitoring and treating when necessary, the risk of death is very, very low. Many people live with low counts and do just fine, but each individual is different.
The best thing you can do is read as much as you can about the treatments, so you can be an active part of the decisions.
It can be very helpful to keep track of your daughter's ups and downs, CBCs and treatments, other procedures, etc. on a calendar. You may start noticing some trends. For example, my daughter was most responsive to Dex pulses, and we discovered that after a pulse, she'd hit a high then slowly, counts would decline--by about half each week until she was back down to retreatment levels. In the end, a pulse would last her about 4-5 weeks.
IVIg is pretty expensive, and it's made from blood products. If it doesn't last as long as you'd /she'd like, you might ask about other options.
How's your daughter handling it? My daughter was diagnosed when she had a non-stop menstrual cycle at age 14--needed surgery to shut it down! She found it very rough and it was hard to get much real support from friends, who didn't understand what ITP meant for her in terms of restrictions from activities, disruptions to her routines, and side-effects from meds. After all, she LOOKED pretty normal, except for the rapid weight gain the steroids caused.
The time soon after onset of ITP is often the time of most flux, til you get things kinda sorted out. Post anytime--and you may want to look over in the adult section, because of your daughter's age. It's more active over there!
My daughter went through a year of ITP's (and Dex pulses) ups and downs before she/we went for Rituxan. It doesn't work for everyone and it does have its risks, but she's been in remission ever since--for eight years, seven months now!
Say ohmmmm! Hang in there, both of you! Ann, Caitlin's (24 y.o. this month) Mom
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