My name is Lesley & one of my children has recently been diagnosed with ITP. He is 4 1/2yrs old & we went to his doctor since I noticed alot of bruising on his shins, forearms & even on his shoulderblades (more than usual for him anyways). He also seemed to get these red marks that almost looked like a "hickey" popping up here & there. After doing bloodwork that same day, we got a call in the middle of the night (within 12hrs of the bloodwork), advising us to bring him in the hospital asap. I was so scared I couldn't even think straight. When we went to the hospital, we were told that he was at "8", then they repeated bloodwork immediately & he was at "15". They then put him on an IV & gave him IVIG & then tested his bloodwork again 12hrs later & it was at 48, so they released us. Three days later, we got more bloodwork done & his level was at "155", which I guess is in the normal range .... but yesterday & today, I notice he has more bruising on his shins with the red marks close by the bruises - but not anywhere else on him. I would like to talk to anyone else out there who has a young child that is also going through this ... or anyone who may have some suggestions on how not to freak out everytime I see a mark on him. He is so afraid of getting more needles & bloodwork, but every post I read on here suggests that he may need to have more & more. Please email me back ...thank you!
So glad you found the PDSA which is a great source of information and support.
IvIg works in approx. 80% of patients with a response time of 1-2 days. There are patients who require more than a one time dose. Unfortunately, there are no predictors of which children will remain "acute" and which will become "refractory" meaning they require multiple types of treatments over a longer period of time.
I would recommend starting a notebook to keep track of dates, doctor visits, platelet counts and the symptoms that were present with those counts. Keeping it all in one place with either be very helpful in the future, or possibly not necesary at all if your child remains with normal platelet counts. It will also give you a place to write down questions you might have for your next visit.
ITP is refered to as a rollercoaster-up one minute, down the next. Hang in there! There are plenty of parents here to answer and offer support!
My son has only had ITP for a little over a year now and I am fortunate because he was 10 when he got diagnosed. I haven't got it sussed myself a lot of the time, but I was trying to decide what my advice would be, and I came up with the following
1. Panic is not helpful, and neither is worrying.
2. Preparation and advance planning are helpful - things like making sure you know what to do, the school know what to look out for and what to do if there is a problem
3. Try to keep life as normal as possible - don't let ITP take over your life or your sons. Its difficult to do, but put your preparations into place, and then just try to get on with life. My son does pretty much anything he used to do, but with some modifications - helmet on his bike, no heading the football.....
4. Treats for hospital visits seem to work well - we always play "guess the platelet count" beforehand, and then we treat ourselves to a fast food lunch on the way home for guessing near (even if it is 100s out!!). Don't make a big deal of blood tests though.
5. I agree with the previous answer that keeping a diary of symptoms, blood test results etc is helpful - if nothing else, it makes you feel more in control, and with ITP, its very easy to feel very OUT of control.
I don't have much experience of treatments, because in the UK, very few kids get treated for ITP - most just do wait and watch. But from what I read, IVIG is a short term treatment so getting bruising again would be expected. Maybe its time for another blood test?
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