Newly diagnosed

HI my son was just diagnosed with ITP, he is 2.5 years old.I have never heard of this until now,I'm very scared and all I do is cry and freak out with every bump n bruise. I fear for his life all the time now and constantly think about  it. His doctor said his platelet count was 62,000. She suggested steroids but we wanted to wait and see if it increased next week. I just wanted advice on how to deal with the disorder and how to protect my son as well on things to try n not try. Thanks.

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  • As a child there is a high possibility he has the 'acute' version of ITP as against the long term 'chronic' version that adults most often get. The good thing about the acute version is that it generally goes away after 3-6 months and often without any treatment. Did he have an infection or a cold/flu before he was diagnosed as this can often be a trigger?

    Whilst his platelet count is below the normal range of 150,000-400,000, a count of 62,000 is still quite safe and it is only when you get below 20,000 or worse 10,000 that there is real cause for concern. The threshold for having an operation is considered as 50,000 so he is well above that. If it is of any comfort I spent some period of time at 0 and made it through unscathed and some people who don't respond to the medications live a relatively normal life at around 10,000.

    Once you get over the initial shock of ITP like everyone has when they are first diagnosed, it becomes more often of an inconvenience that a life-threatening illness. I hope for both of you that his is just acute and goes away never to return.

    Robert

  • Hi, Robert1959 has explained it very well. Don't worry, as generally kids get better. 

  • You need to stop the crying, freaking out and feeling scared. It doesn't help either you or your son. Mine was born with a count of 15k, and as we discovered six months later, a massive hole in his heart. He is now 20, and in his second year at university.

    I've has ITP  since I was pregnant in 1995, and have no medication, as I don't bleed or bruise overly much until my count is about 25 or so. Even then, I don't have meds.

    Who diagnosed him, and why was there enough concern to take blood from a 2.5 year old?

    A friend of my son had an episode of ITP when he was about 14. It just happened, then went after about 4 months.

    Platelets vary on a daily basis. I can be tested with a count of 19k, get sent to hospital, and 12 hours later the count might be in the mid 30k range.

    Don't let this spoil this bit of your son's childhood. There are worse things he could have, and whilst it is normal to be worried, it will affect you and him if you worry about this all the time. Yes, keep an eye on him, but even though my count is now between 25-40, I still drive a car, fall down stairs sometimes, bash my knees etc. I don't play rugby, but I ride a bike, and use sharp knives when I cook. You can limit risk in subtle ways, without wrapping him in cotton wool.

    Good luck. I know it's tough, but once you over the hump and have found out more about this, then you tend to forget about having it, or at least I do.

  • Stay strong,give him a normal rich diet,it should go away within 6 to 12 months.I know its tough,my son had it when he was 10,is fine now.God bless your family.Just try and relax.

  • Don`t worry, IN 2009 when I got mine, the doctor told me that with little kids they get over it while their young, so may that be a blessing.  My count was 2 when I got mine and has gotten better over the years.  I went through all the different meds and am now onRevolade .   which has helped over the last two years.  I am in my senior years and don`t know how come we get this  All the best, Val

  • I am so sorry to hear about your baby son.  I couldn't imaging this happening for such a young person.  I am going on 70 yrs. old this year and have had it or known about it for only the past 8 years.   I read about it now frequently online and that is how I get educated about it besides my own treatment experiences.  It is important you have a good doctor you trust and like the others in this post his numbers are safe for now.   I do hope this is a brief period he will overcome without much intervention.  God love you.

  • My daughter was the same age at diagnosis. It is hard trying to deal at first it gets easier over time and really there are only slight modifications. I do not like to make my daughter feel too different but I watch her closly and try and modify based on her mood and signs that she is dropping. Once you learn what to watch for in your child it's easier to handle. I would have to watch how rough she was with her twin brother and at fist the doctor told me to keep her in a helmet and away from her twin. I laughed and said there is no way that's going to happen. For a 2.5 year old there is not much to worry about and if in day care make sure everyone is aware and have them call you for any little accident. As they get older no contact sports, roller coasters can be dangerous and I also got a medical alert braceletin case we ever were in an accident. Under 50 is the more concerning and under20 very scary. My daughter hangs around 20 to 90 and we take her to amusement parks, on the boat and try and letherbe as normal as possible with close supervision 

     

  • Sorry to hear about your son.  I just felt like I needed to add my 2 cents.  Hopefully it will put some of your fear to rest.   I'm 56 and was diagnosed with ITP at age 4. They immediately removed my spleen which in my case didn't help.  Most likely your son will grow out of this disease but if he doesn't, just know that you can live a very normal life, kids, sports (being a little more careful with head injuries etc) work etc.  The advice I would give you is to make sure your hematologist is familiar with ITP.  It is an orphan disease and I've found that the doctors that are not familiar with it will over medicate and put your son through more than may be necessary.  Bottom line, don't be afraid to be forward with your doctor and make sure he is very familiar with ITP.  Example: I started with a new doc and after going to him a couple times I realized I was more informed on my disease then he was.  He kept wanting to send me to Stanford, more so that he could get a handle from a big hospital on how he was suppose to treat me.  My current doc actually had ITP when he was a kid :)  and has several ITP patients.  Good Luck and chin up.  :)   Tami

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