you can get a indium labelling scan done in aberdeen

my 11 year old son had his spleen taken out in feb last year ,today he has had a relapse he came out in bruises so we had his bloods done and his platelet count is 43 , he had 3 spleens one large 2 small they removed 2 through keyhole and left 1 which was attached to his kidney and now they think it has grown and functioning and eating his platelets so they say they will try to organise a indium labelling scan in aberdeen which they were only able to do it in manchester or london so its good scotland can finally do it.

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  • Good luck and hope everything goes well. Nicky

  • Hi I'm from Australia so I would be really interested in the results of the test. I had my spleen out 9 years ago went in to remission for 9 years. Got it back last year I have 2 small spleens they did not take out in 2004.

  • Hi, I was only diagnosed last year and had never heard of this illness. I have since relapsed and the doc is talking about spleen removal if this round of prednisone only results in another relapse. I'm not sure about having this operation as I have read it doesn't always give good results. Where in Australia are you? I know no one with this and need to talk to someone

  • I live in NSW and had my spleen removed and it did not help. I relapsed 6 months later. I would not do this unless really necessary

  • Thanks for replying to me. My levels have unexpectedly come up this week, but I am still weaning myself off the latest round of steroids (which make me feel terrible). What medication do you have to take now that you have no spleen. I told my hematologist that I don't want my spleen taken out but I don't think he believes me. We are in for a battle. Did you get a second opinion before you had the spleen out, I asked the doctor and he basically told me that any doctor will tell me the same thing. I am prepared to go anywhere in the Eastern States if it means I can get good treatment for what seems like a real hit and miss system of treatments.

  • That's ok. Steriods are horrible! The only good thing about having my spleen removed was that I can now have a new treatment and do not have to take steroids anymore. I am now on Revolade as I have Chronic ITP and not even the prednisone was helping.

  • I had also same thing nd i had spleeNectomybnd relaps after one year than i was started on dapsone with good response

  • i will keep you posted , i hope he gets the test as i enquired about it a year and a half ago and they said he was too young as they take a lot of volume of blood out when doing the test ,the only place then was in manchester england or london but now we have it in scotland so my fingers are crossed he will get it .

  • Mmm, this is interesting for me as it wasn't till I was 15 , we were told about the findings of the operation I had to remove my spleen when I was 3 yrs old. The Consultant told us I had 3 spleens, two small ones,one either side of my main one. They removed all of mine and I didn't think anything was significant of it, just joked that maybe I was meant to be part of triplets lol. I thought I was the only one till now. Good luck and I hope he stabilises, I was ok will I reached my mid twenties and relapsed but I have stabilised again.

    Sheila

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