Daughter diagnosed June 2011 had severe bleed on brain feb 2013

Hi my daughter was diagnosed in 2011 with itp at age 8. She had a platelet count of between 4-8 over the next year and a half and had no treatment. She had occasional bleeding from gums but apart from that was healthy. Then this year unfortunately she took a turn for the worse. She was at home feeling sick where she then vomited blood by the time we were going to the hospital she collapsed an had a fit. The ambulance came and she was rushed in. After what sempt forever the doctor came an told me she was being rushed to a different hospital for emergency surgery because she had had a major bleed on her brain. Two days later she needed to have her skull cap removed due to pressure. After a week she had another MRI scan and we were told she was basically brain dead and hiw she was laid in bed asleep was pretty much how she would be. She spent 5 months in hospital having intensive treatment a cranio plasty fitted from where her skull had been removed. She also had a spleenectomy which initially showed no effect. She then started on romiplostin. Her recovery has been amazing shes now back at home she has right sided weakness and weak legs ands mobilises in a wheelchair some short term memory problems but all in all is doing fantastic. If anyone has anyone questions about itp please feel free to ask and il do my very best to help.

8 Replies

  • Her recovery is an amazing story, this is wonderful. My daughter also had an intercranial bleed in October 2012 when her count was 0 and she to has had a really good recovery She is now on MMF and Eltrombopag and monitored on a regular basis. All the very best wishes to you and your daughter and hopefully her recovery continues. God Bless. Keep us posted.

  • So nice to hear of someone else who has had a good recovery too. Does your daughter have any long term problems due to the bleed? My daughter has been in romiplostin with good effect she hasn't needed any for 21 weeks now and counting :) maybe the spleenectomy is finally working. Love to you and your family :)

  • Question is did Ur daughter count go up right after spleen removed and evenly drop because that happen to my daughter and we trying to be hopeful that maybe with trying a medication it will help to keep her stablized.

  • Hi we were lucky enough not to have a spleenectomy. Thankfully there are no long term effects she just seems to get tired sometimes but I think that may be something that all ITP sufferers encounter. As stated she is on MMF and eltrombopag and we did try to reduce the dose of eltrombopag but her count started to fall again, we are now trying to reduce the MMf, looks like she will be on medication for a long time, but that is better than the side effects of ITP. Take care

  • Aww so happy to hear she's ok, there's nothing worse than your children being poorly. Take care and all the best

  • Good luck to both your kids. Wish them well for the future

  • I am so happy your daughter is doing better. It seems that the romiplostin is working really good for your daughter. Do you know how this drug raises the platelets? I have ITP myself and struggle with the excessive tiredness daily. It's really hard having a sick child. My son was diagnosed with tongue CA at the age of 16. The worst part about it is they don't know what caused it. The good news is that he has been in remission for 8 years. Well, I hope your daughter continues to get stronger and better with her short term memory.

    God Bless

  • So sorry to hear about your son but sounds like he's doing fab now :-). Romiplostin works with the bone marrow to produce more platelets. It's not a cure by any means it's used for the reason to help higher the platelets when other medication and spleenectomy hasn't been as effective as doctors would like. Touch wood my daughter hasn't had any for around 18 weeks now and her count has been around 400 which is high. She goes again on 15 th nov and were hoping its still high.

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