22m old has been diagnosed with itp 2w ago

[lotte2121]

hi, my little boy is 22m old, a few weeks ago we noticed a small rash on his legs and some extra bruising but we wernt overly worried and thought we would contact doctor after the weekend, 2d later at my sisters wedding he had a small fall which cut his gums and his lip, he had a lot of bleeding from this so thought it must of been a worse fall, it kept clotting and then he kept choking on the clot, so we took him to local walk in centre who said if he didnt stop bleeding to go to a&e, it didnt so at 11.30 on a saturday night we took him, his bleeding lasted 7 and half hours but had stopped by 3am when we got seen, his rash came up realy strong and we told the a&e doctor who said it was fine and sent us home (we have put in a complaint), the monday morning we went to doctors about rash and were rushed to the childrens ward who then diagnosed itp, his count was 10, the following week they rose to 20, still waiting on this weeks results, he has no rash and only 2 bruises apart from the ones from his bloods. im confident they have risen, but just wanted to know if them rising is a very good sign or it is impossible to tell as i know they rise and fall a lot. i was given a lot of advice from our stay in hospital but the last 2 bloods the doctors realy didnt know anything about itp, one even tried to send us home saying his bloods were absolutely fine, and when i asked what his level was they said 'what level'. i know its hard as theres a lots that isnt known about itp, but any help would be greatly appreciated. sorry for the essay, am a very worried mummy x

[AnthonyHeard Administrator ITP Support Association]

Hello lotte2121, sorry to hear that your son has been having such a difficult time with ITP.

The first thing I would suggest if you have not already done so, is have a good look at the ITP Support Association website at witpsupport.org.uk where there is plenty of useful information about ITP including ITP in children.

In young children ITP often clears up just as suddenly as it appears and that is why with many doctors/ specialists they do not actually prescribe any treatments straight away. They prefer to watch and wait, hoping not to issue any treatment unless the patient has serious bleeding, bruising or in some cases other medical issues. In adults ITP is most often than not looked upon differently as doctors tend to issue treatment much quicker. But all cases are different and treated in their own individual way.

In young children it is difficult and of course very worrying because it is hard to keep them away from doing things which could lead to danger. When the platelet count is below 20 bruising, purple rash/spots called petechiae, bleeding from the nose or gums or even in the urine or stools is quite likely. But it is does not happen to all ITP patients as we are all different. My platelet count was only at 4 when I was diagnosed but I never had any bleeding at all just plenty of bruising. Another symptom to look out for is general fatigue, tiredness and irritability. This is often overlooked by some specialists but it is a definite symptom of ITP and low platelet count.

Young children sometimes develop ITP as a result of a reaction to an immunisation or possibly following a virus like flu or even a cold. You tend to see that their immune system recovers much quicker than adults and as such ITP is less likely to be long lasting than in adults (as I know from my own experience being diagnosed at 46 ).

Are you based in the UK lotte ? If you are you are always entitled to get a second opinion on your sons situation. As ITP is quite aware many hospitals do not see many cases of it and by their own admission they are far from expert. So you can elect to get your son seen by an ITP specialist if you are UK based. Let me know and I can let you have a list of all UK ITP experts.

Hope all this helps but do keep it ouch lotte and let us know how you get on.

Best wishes to you and your son.

[AnthonyHeard Administrator ITP Support Association]

One other thing to mention lotte, the platelet count in all people varies all the time. A healthy platelet count is between 150 and 400 . Anything above 50 is deemed safe if anyone is contemplating surgery of any kind, including dental work. A platelet count under 30 is usually when doctors/ specialists look to issue treatments, particularly in adults. With children treatment is not given so readily as many find that their platelet counts return to normal quite quickly. Platelet counts do fall when we are suffering from a cold, flu, virus, illness even in people without ITP. The difference of course is that with non ITP sufferers the platelet count rises back to normal levels as soon as the cold or virus goes.

[lotte2121]

hi anthony, thankyou so much for your reply. i have read up on the itp website which is very helpful. whats more helpful is talking to people such as yourself who due to suffering from it seem to know a lot more than a lot of doctors do. we have just chased up the hospital for his results and they have dropped to 13 now, although not got hold of consultant yet, is all very frustrating, im hoping he caught the tail end of a sickness bug my mother in law brought round and that would explain the drop. is very helpful to know that i can get a second opinion if our local hospital are still quite unhelpful in a few weeks, our own consultant seems to be quite good but as you say they dont see it often, aparently they only have a maximum of 2 suspected cases per year and it is a fairly large one. our results did get sent up to great ormond street first off, so have been looked at by specialists, but since the first week all we have gotten is people who have never heard of it. he does seem quite fatigued with it and now has had a slight rash apear in his mouth again. thanks again, i realy cant tell you how much it helps to talk about it to someone who even knows what it is and can give advice etc. lotte

[NickyD]

Hi Lotte. Hang on in there. It can take a while to get answers but do as Anthony says and fight your corner. We are all so different and but we all need reassurance when frightened. Take care and you are not on your own. NickyD