Hello, its been a while since I posted… sadly Lois’s platelets are still high and unexplained. She’s still not had a ‘normal’ result and testing every 3 months. Since last June she has also been ‘passing out’ - this has happened 7 times with a cluster close together between November and December, this lead to and EEG - normal, a holter heart test (detected pauses and fast and slow heart rate) and a heart echo - normal. She’s been on iron since last July for the high platelets. We are still stumped as to what is going on - the drs dont think the passing out is related to the high platelets but they thought the iron would help the passing out - but seems inconculsive so far. The iron was normal at the last test. Just wondering what we do next… they said they will re do the Myeloproliferative neoplasms (MPN) mutations testing in March but Im at a loss as to if they should be testing for anything else, or if they should have tested family yet, or when they would do a bone marrow biopsy for a child? She had episodes of passing out with the Chicken pox vaccine in August - but this happened 3 hours after, and then she was exposed to Chicken Pox at nursery in November and had 2 more episodes of passing out, the drs were puzzled by this - wanting only to put it down to cooincidence… ? Still feeling very lonely and in limbo! Wondering what else I should be doing to get help for her? It’s quite frustrating to have been told for nearly a year that it would go back to normal - only for it not to and now drs still have no idea what is going on… its not reactive because her other results are all normal and have been several times.
Oh @LoisMum I am so sorry that you are still living with this uncertainty, it must be so hard for you with your love, caring and maternal feelings for Lois.
It really does seem that the medical people are trying as hard as the can trying to work out what is going on for Lois.
Thanks so much for updating us but really look after and be very kind to yourselves
I think you are doing all that you can. The good thing is that the hospital are checking regularly. However, I know how hard it must be not knowing X
Dear @LoisMum
Really sorry to hear that Lois has had some episodes were she has passed out. It sounds like she has had quite a lot of investigations around this. How she generally, day to day? May I ask how often you are seeing the Paediatricians?
I don’t think there is anything else you should be doing as you are escalating any issues and asking questions which is excellent.
You asked a question around a bone marrow test, this would only be undertaken if there was significant indications that the bone marrow function was failing. It is a procedure for a child that is done under general anaesthetic so the medical team would need a clear need to undertake this.
In terms of your family, are they all well and do they have any history that you see as significant? You can always speak to your GP about this if it is something that concerns you or you can talk this through with the paediatricians.
As I mentioned, you are doing a great job in advocating for you daughter. If you do need to talk please know we are here: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma