My daughter first had ITP back in 2004 when she was 11, triggered by anaplasmosis from a tick bite. She's very fortunate in that after an ITP episode, her platelets return to normal until the next virus or trigger comes along. She went off to college and managed to avoid severe ITP her first year. There were a couple of head colds that caused mild petechia but she slept them off and rebounded on own.
This year, she had a sudden fever of 101 with lots of aches and pains. The next morning the fever dropped to 99 and then went away. Very strange behavior for a fever. The petechia began to appear the 2nd night. She had her blood count taken the following morning and it was 2000. She didn't get the results till the afternoon and went to the ER as instructed. Since she was away at college, it was a new hospital (small regional) with hematologists from a local practice. To be with her, we drove up the 1.5 hrs as quickly as possible.
When we arrived the triage doctor informed us he was lining up bags of platelets and blood for her, but was waiting for hematologist to stop by. I added to the case history my daughter had given them - mainly that IViG was a miserable experience for her - aseptic meningitis, so we preferred watchful waiting until her platelets rebounded on own. Took me a while to realize they were treating her as a ticking time bomb that could bleed out any second. Which at 2000 (a personal low count for her) could happen.
The new hematologist visited and was excellent at listening to us about her past history. Her concern was that at nearly 19 years old, perhaps my daughters platelets wouldn't rebound as quickly as a kid's. Her count taken in the ER was still 2000, so treatment had to be done. But instead of IViG, she received a whopper dose of steroids through IV. They admitted her to the ICU overnight for observation (yes they were very concerned about a bleed out). The next morning her counts were only 5000 so they administered another whopper does of steroids via IV. That afternoon her counts were 14000 so they released her. (and we learned that ICU nurses rarely ever have to fill out discharge papers).
My daughter basically slept two days straight with some forced feeding in between naps. That was a good sign to me because she always sleeps when her body is making platelets like crazy. The 2nd day out of the hospital she had a whopper headache with a 99.7 fever, which seemed to be prednisone withdrawal. With food, tylenol and a prednisone pill, the headache quickly abated.
The third day her platelet counts was 219000! Major relief, that was her usual recovery rate.
While it was an incredibly stressful few days, we also learned a lot about having a new hospital. I liked that the hospital doctors didn't even pretend to know much about ITP and completely deferred to the hematologists, who was excellent in listening to past history on what was done, not done and reactions. There wasn't the autocratic "I've always done it this way". In the ICU, there were medical rounds for med students and residents. Since the nurse was not very familiar with ITP, they had me present the case history and I answered their questions. I almost snapped at the eager beaver med student who had googled enough to shout out "splenectomy". Would have loved to pull a Dr House on him. But I just pointed out that made no sense since she has a history of recovery/remission between acute attacks.
We don't feel out of the woods yet because we don't know what caused the initial fever, fevers are not usually that short, especially flu like. There was no cold like congestion. We are waiting on tick disease blood tests, they've been culprits before.
And we think the mega-steroid treatment had fewer side effects than the IViG, she's back to classes much faster. But we don't know that much about it, if it could have a lasting impact.
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