Joining the anxiety of parents

It's good to read about people sharing useful info.I've been dealing with this problem for 7 years when.n my son who is 8 now was diagnosed with IT and has had 3 bone marrow tests so far.I ve been told the only cure is bone marrow transplant but I'm not sure how far that can be successful. I have to take my child for transfusion in case of trauma otherwise he is surviving. It's too scary to watch him as he can get hurt a y time.its sad for a parent but worse for the child as his life is at risk.can some one tell me what chances there r in transplant.

8 Replies

  • Hi there. Professor Jim George from Oklahoma, an expert in ITP, always says ITP is worse for the parent than the patient and I hope this is true with you. Bone marrow transplant sounds a very drastic step when there are very good drugs available that will control the ITP. Where you are located. If you are in the UK, why not have a second opinion from an expert in ITP. If you look at the ITP Support Association web site, you will find details of the centres a round the country.Look under forum. Let me know.

  • Thanks for responding.I'm in Jeddah and my son's heamatologist gives him no medication his count is at 10 for 4 years,all I hear from his doctor is that the bone marrow is nt making the megacariocytes that makes platelet ,so go for transplant that is expensive and risky if the body doesnt accept it.I 'm thinking of transplant only in case of being last option.I wish he can survive with this count forever.

  • Hi. Thanks for the response. Do not worry about no medication and a count of 10. That has been my situation for ages as I told you. I have lived a normal life with a count of around 10, but of course I am not a youngster. Are you returning to the UK sometime soon and if so, I suggest you arrange an appointment with one of the specialist in ITP. I have written a personal note to you.

  • Thanks for replying.I'm an Asian working in Jeddah but I hope my son keep s going as he s done so far but the risk is that if other cell lines grow weak it cd make things worse. I need t o know which place in UK is doing transplant but as it's extremely expensive I'd need support as I can't afford it.

  • What is cd?

  • I agree with what Sailor says. perhaps you should get a second opinion particularly since I have heard it said that adults tend to get chronic ITP while children get the acute type... the implication being that they get "cured".

    Best Wishes.

  • Rafiq That is correct Children often have ITP for a short period. However, a second opinion I feel is called for here. Bone marrow tests for ITP are not common and I would ask the question why is he having so many.

  • Thanks. I hope my son doesn't need transplant but I have a family history of a cousin with same condition.So far he has survived with count 10 but I'm just doing research on transplant centres where to go if I need it for my child.

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