Child with history of ITP gradual reduction in platelet count

[Mummycat]

My daughter was diagnosed with ITP at 14 months old after a vaccination. She had low platelets for approximately 2-3 years before she gradually regained normal platelet levels and as a result her ITP was deemed chronic. She is now 8 years old . Over the last few months she has had a gradual reduction in her platelets, dropping to 7 at the lowest so far. She has had a run of infections and illnesses. However, she now has a new haematologist who is adamant that her low platelets cannot be due to ITP as he says that she would not have had a gradual reduction, they would have dropped suddenly. Consequently he believes she has leukaemia. She is having a bone marrow aspiration and biopsy on Monday. Has anybody else's child experienced a gradual drop in platelets?

[2sweetkids]

Hi mummycat, that is absolutely awful for you. Where about in the world are you? My son (6yrs) has had itp for 1year and is now chronic too. Although we had a bit of relief for 3mths in the winter time where his platelets were up to normal levels. Platelets have been 4 at the lowest. His platelets go up and down but in single figures and sometimes 15 or 20 if we are very lucky. He has broken his arm twice and has narrow bones but doc has never suggested he has leukaemia. I thought they could rule that out by a blood test??? If white and red are fine and only platelets are affected no leukaemia.. please write and tell my how you are getting on now. Stay strong for you little one

[Mummycat in reply to 2sweetkids]

Hi

Thanks for your reply. My daughter has now had all the tests for leukaemia and so far they are all coming back negative. The haematologist is still adamant it can't be a reoccurrence of the ITP and has sent her bone marrow biopsy off for genetic testing. Blood results are always confusing with my daughter as she has Down's syndrome and issues with her immune function as a result. This can influence her other blood counts as well as platelets. Also as leukaemia is far more common for children with Down's syndrome consultants tend to worry a bit sooner than they would perhaps do for typical children. She is also on warfarin as she has a complex heart problem which also makes the issue far more complicated! At the moment my daughter's platelets have gone back up to the 80's so she is stable again. She has had two platelet transfusions in the last fortnight and the plan is if her counts drop below 30 she will have another transfusion.

[S38abcd in reply to Mummycat]

Hope things get better for ur litte one.A count of 80 is amazing so relax n dont worry too much .It seems she cn be normal withITP but a few ups n downs r unavoidable.my son has ITP for 9 years now n he s managing school etc(count upto 10) but with a alot of precaution.Its a struggle more for the parents as children r not much aware of their condition.I try to train him to take control of things to live normal.its sad but there isnt much we cn do about it.

BEST WISHES FOR U Dear mom

[Mummycat in reply to S38abcd]

Thanks for your reply, I'm less worried now that her count has gone up. The warfarin / Coumadin makes it difficult because she is already at risk of bleeds due to that so the doctors are extra cautious with her platelet count. She has had two major bleeds already this year when platelets were normal and ended up in resus! Hopefully things are settling now though.

[Eviemummy5]

It's difficult for me to understand the worry you have as I was diagnosed at age 5 with ITP and had lowest count of 15. I am now 35 and don't think I will ever understand the worry my parents had then for the tough 18months of daily blood tests and feeling helpless just watching my fatigue. I have had 2 episodes of low platelets since then that were worrying but fairly stable. I guess what I'm trying to say is stay positive and trust the doctors they will look after your child. 30yrs on I get fatigued but my platelets didn't drop even during my pregnancy with my own 5year old daughter. It does get better. Best wishes to you all

[Mummycat in reply to Eviemummy5]

Thanks for the encouragement. Now that my daughter's platelets are above 20 her tiredness levels are much better. Now I know it is not leukaemia I am much more positive too! We are still waiting for biopsy results to come back but I think the general assumption now is that it is a reoccurrence of her ITP.