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Hi I am very new here only a member for um.. 9 minutes. I am so frightened my 9 year old son has acute ITP. He has been pocked prodded needled and had 6 lots of IVIG over the time he has been diagnosed with this condition which he has had for 18 months.My son has not had much of a rest at all in this time, currently today his platelet level is only 8.. his hematologist from Sydney is saying we do nothing unless he has any bleeding. I have been strong all this way through but im finding Im having terrible anxiety attacks. I weep as I am writing and feel silly all at the same time as I know I am blessed that my son is still here and is ok, but I am petrified that he may have a brain hemorrhage or big internal bleed etc.. I have had to rush him into the car and drive 30 minutes to hospital in the middle of the night with his gums bleeding. I am so very desperate to hear from any other parent that feels like her baby is a walking time bomb, that sounds awful I know but im so scared right now. Id Love anyone's advice or words etc.. tell me to shushh up even if you think im a whinger hehehehee I probably could do with a bit of that too xxx

Hi PJ,

I understand how you feel. With ITP I was moving between being frightened and furious.
The emotional side can be very bad. Especially since you want to protected your little one and feel helpless. You are not. You being there for him helps him a lot!

The only thing I can say that might help you, is that how ever low the count is, it is just a number.
I've had counts between 0 and 3 for weeks once. (That was before I had a proper diagnosis) Apparently the rest of my clotting mechanisms kicked in and prevented anything bad from happening.
(I was building a house and was not very careful at that time)
I'm sure this will be the same for your kid. The chance that he outgrows the disease and health completely is also far bigger for him, than for any older patient.

Good luck for you both!

Joerg

Dear PJ

Just wanted to say I dont have children so I dont know how you feel, but I had a count of 2 a little while ago, and I was hospitalised for a week to get the count up. It was very scary as all you think is the worst...I had bad mouth sores and some bruising, and when I brushed my teeth my gums bled - they can give you Transanamic mouth wash for this to stop bleeding - perhaps ask if they can for a child? However please believe me, its amazing how calm the doctors behave, so they must know something, you do have other mechanisms that kick in, its not just platelets that help you clot, and apparently also sometimes they say the size of the platelets help so you may have a count of 2 or 8 but platelets can be larger to accommodate clotting.

Try stay calm as your little one will pick up on this...
I know its hard and I have felt panic stricken these last few weeks, but its amazing how the body copes!!!

Hoping the counts increase and hoping you find a bit of calm...

Thank you Joerg,

Its comforting to know someone out there understands, I feel a bit better today. My son and I have just got back from seeing his pediatrician. $200 later and no greater step forward but she is so lovely and chatting with her helps.As usual nothing they can do unless he bleeds etc. I asked her if there was anyone else around our area that has a ITP so we could make contact and gain support that way, there is no one else around here that has ITP, totally explains why the rush of university students looking at my son when he has been in hospital
Anyhow he is off back to school tomorrow to try and get life going as normal again. It sure is very hard.
Thank you soooo much for repying Joerg

Hi there Fiona,

You are awesome too, Thank you so much for your reply. You are so right about our amazing bodys, I do forget so quickly how great our mechanisms work and fall into panic mode. I have never heard of the Transanamic mouthwash, I will ask the doctor next time it sounds good. I suppose I freak out on the worst case scenario even though we all know the statistics are low of having a bleed on the brain it is worrying. I feel for you too Fiona you have had a rough time of things too.
My thoughts are with you both Fiona and Joerg x

Hi PJ,

My general doctor had seen one patient with ITP before me. He was in business for almost 40. So yes, it is rare.
When I got it first I was in a hospital and nobody had an idea about it. They had to transport me to a larger city to find doctors who would treat me. I stayed for a week in the hospital and had around of dozen doctors wanting to see me. Rare diseases can make you popular among doctors

I have now found a hemo who knows ITP well and I've not been to the hospital again. (Despite having counts below 10 some times)

all the best!!!
Joerg

Its very easy to get freaked out by ITP. I always remember something the haematologist said the first time my son saw him - in general, ITP patients are in the top 1% of patients he sees in terms of their wellness and only about 1% of those 'well' patients have serious problems. In my mind, that makes the rest of them, including my son, WELL, and thats how I try to treat him.
In the UK we dont treat kids either. My son has had ITP for over five years now with few problems despite counts that have been usually under 15. I say "have been" because he finally seems to have much higher counts all of a sudden - although I wont know for sure until he goes for a count

Good luck

I freaked out in the early days, too -- it can be so totally overwhelming. Time helps. This site helped me enormously, esp Ali P (who has already responded to you on this chain) because she was so seemingly Zen about it. Give yourself some time. I agree with everything everyone else has said. Glad you found this site. It becomes so much easier over time, a part of life's fabric and not this totally suffocating thing. Good luck