My son is 21 months and was diagnosed with ITP on 4/9/12. On 4/7/12 I noticed large welts on his body, maybe about 6 of them. They ranged from the size of a nickel to the size of a quarter. I called my ped & he said it sounded like hives, to give him benadryl. By Monday morning, they looked worse, so I took him in to see the dr. He took one look and said they were not hives. He came in with a book and said that he has HSP and he showed me pictures. He explained that HSP leaves bruises after the markings. Just to be sure, he sent us for bloodwork. I rec'd a call within 2 hours from the nurse who told me the dr wanted to see me in 20 min. I was so nervous because the dr had assured me my son would be fine. I had so many things going through my head at this point. When I spoke to him in the office, he advised me that my son's platelet level was at 20,000. He said everything else was normal, so he thought it was ITP. He arranged for us to go to a large hospital about 25 min away and said that he spoke to the pediatric hematologist and she would take it from there. I had no idea what ITP was. I had never heard of it before this day and never even know it was something to worry about. We arrives at the hospital ER about 2 p.m. and after a long day and more bloodwork, it was confirmed that my son did have ITP. The dr said his levels were at 22,000. She said they generally do not treat unless the child is below 10,000, but she observed my son, the toddler that he is, and said that he should have a treatment. My son is very active and I would not even had known anything was wrong, but these welts (or ITP) on his body are what tipped me off that something was wrong.
We decided on the WinRho treatment. My son had such a rough day from being examined & poked. He was crying everytime a nurse came in the room. He finally fell asleep during the treatment (about 9:30 p.m.), but he woke up shaking. I held him close with a warm blanket and he stopped after about 10 minutes and fell back to sleep. By around 10:15 p.m. or so we were discharged. By the time we were home he started shaking a little more, but it went away within minutes (they said it was a side effect of WinRho). He woke up a few hours later with a 103.4 fever & also vomited (the frist time in his life). I called the dr & she said it was a side effect of the WinRho, so after some Tylenol, his fever went down & he was able to sleep.
The next day he broke out in horrible hives. These were small and clustered together, all over his torso. I just kept gibing him Benadryl and it seemed to help them subside. He went to see the dr on 4/11 and his platelets were up to 120,000, which was good news. 5 days later they were up even more, to 294,000. I was so relieved at this point. She scheduled us for a 2 week appt being he was doing so well. We went yesterday and found out his levels are now at 101,000. I felt so helpless. I really thought they would be much higher than the last time.
My son has now been on Benadryl 3 weeks due to the hives. The dr seems to think my son still has a virus in his system, which is why he is still getting hives. My ped had looked him over and also confirms hives, but tells me if it s virus, so he can not do anything.
I just feel helpless as a parent because I feel as though there is nothing more I can do. My son seems fine, but I feel as though as long as I see the hives, he continues to fight a virus which is counting against him with the ITP.
Are there any other parents that have seen hives with ITP? Thank you for reading my story and I hope to hear from anyone who has any thoughts or similar situations.
