my 23 month old may be being referred to gosh for treatment, anyone know what treatments may be given?

hi, my son was diagnosed about 5 weeks ago with a count of 10, his highest was 20, but now dropped to 11, currently waiting for the consultant to find todays blood results, which i know is low as the rash is back which was not present when he was above 13. i was told as its been over a month with no real improvement he may be refered to great ormond street hospital, and they will discuss treatment. although i seem to know a lot about itp at the moment i have no idea of the treatment as i was always told with little ones its likely to go without help. does anyone know what they are likely to do first, and how succesful it may be, also whats intailed with it? my son is absolutely petrified when having bloods, and any doctor or nurse, even my midwife as am currently pregnant, due to all this. any help, especialy from anyone who has had a child having treatment would be greatly appreciated. thankyou

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  • I know it's hard, but I would try not to get too hung up on the exact platelet count, at low counts the tolerance is pretty wide on the machines used for testing. The best thing is to keep an eye on symptoms which you obviously are.

    Platelet counts will rise and fall to some extent as part of a natural rhythm and through other influences such as a cold.

    I have only developed itp as an adult so cannot offer any insight into treatments for children.

  • I do not have children but heard and read a lot that the approach to their treatment is to either 'watch and wait' - I believe when symptoms are not too significant or treat with immunoglobulin. My doctor once mentioned that with kids it's often the case that one IGIV treatment is enough and it treats them completely in contrast with adults who cannot be treated completely by this. Keep up optimism, everything will be fine!

  • Hi, my daughter was diagnosed with a count of 9 in Feb last year, she was 3 yrs old. Millie has now just turned five and still has it. All of last year her count ranged from 3 to 10. We had a bone marrow aspirate taken in Oct and then given steroids for 3 or 4 days days. The consultant expected her count to go up hugely(300-400) even just temporarily, but it rose from 10 to 17!! watch and wait treatment resumed. Dec count unexpectidly rose above 20 and then kept increasing until apr this yr up to 118, still with no change in treatment. Millie has had an awful time with having bloods taken it is very traumatic for us all! Difficult to be string when they are having to hurt your baby. June this yr her count dropped from 118 to 7, huge disappointment and currently she looks awful to be honest. I am finding it all quite difficult the longer it goes on, esp now she has been in school a full yr and is spending more time around older children and is more at risk. Our consultant has never mentioned GOSH as like the other person said they normally wait at least until it is chronic ( lasted more than 12 months) before doing anything at all. I have spoke to many people overseas with the condition through my own facebook page but they don't treat it the same anywhere outside the UK. Hope this helps a little, Hope your little one shakes it off, Take Care, Michelle.

  • hi all ,thankyou so much for your replys. well our consultant never got back to us so my husband has been chasing up the hospital today to find out his count, which has risen amazingly to 64. which shocked me as he has a small rash on chest and arm, but obviously we are over the moon as it was last at 11. its a complete rollercoaster, but hopefully we will continue getting higher results. im just so infuriated with the doctors as we see someone different everytime and each one tells us a complete different story, and the nurses taking his blood have no idea why the bloods are being taken so seem shocked when he takes longer to stop bleeding after they are taken. i have no idea why he said we would need treatment, he had me very worried, at least now i know for definate he wont be talking about that again in the near future. im sorry your little one has it too michelle, is so hard, my sons behaviour has changed rapidly due to this and hes scared of most women coming near him as he thinks they want his blood. i cant imagine how much harder it must be having them at school, i have been able to keep little man fairly bump free as hes an only child and i stay at home with him so can keep him in a little bubble whilst its low. i hope her count improves soon again, it is an awful thing for anyone to have, but when they are so young its hard for them to understand, i feel like everythings on hold til its gone, and its only been a month, youve done amazing coping for so long with it. thanks again, lotte x

  • Oddly enough GOSH is not one of the hospitals newly described as an ITP Centre of Excellence. For paediatrics these would be Manchester Childrens', Ediburgh Childrens' Birmingham Childrens', Childrens' in Wales, Oxford Uni Hosp, Newcastle Royal Infirmary, UCH London, St George's London, Addenbrookes, St James Leeds and Norfolk & Norwich. So if you're going to referred elsewhere might be best to pick one of those.

    But as the others say most likely for children is to watch and wait unless there is bleeding issues, blood in the urine or something.

  • I might add that if you go to a hospital that isn't expert in ITP, it is possible that they will overtreat, and the treatments are all generally worse than the disease so best not to treat if you can help it.

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