just wondering, any 'young patients' with mpd's ... - MPN Voice
just wondering, any 'young patients' with mpd's here? and if so how young and what mpd do u have, and what treatment are you getting?
Just wondered how young you mean?
my daughter was diagnosed with ET in April, she is 5yrs old. Currently on no medication, her count is around 800. she is a perfectly normal healthy 5yr old, other than migraines she has no symptoms. she is jak positive. From doing a LOT of research online, a lot of medical professionals say that you can live a 'long' life if well managed. But there is no information on how a child so young fares out with this. She should have a long life ahead of her, im scared to death.
I have no idea how her future is going to pan out, how long will she get before symptoms start, before she has to go on medication, before it could develop into something else. i keep thinking because she is so young and has so much time ahead of her, surely there is a greater chance of the ET developing into myelofibrosis or aml?
I am sorry but can't help with offering any advice to you as only have experience of my own as an adult. However I just wondered what made you realise that something wrong with your daughter ? Was it just the migraines ?
I only ask as I can't help wondering if my daughter might have ET as well as me. She is 7 and has had a couple of migraine type headaches in the last year. I am JAK positive too and although I have read it is not necessarily hereditary both of us also share same chromosome abnormality already.
yes, as soon as she could talk she started complaining of a 'stingy head', diagnosed with migraines at 4. they did a routine blood test and noticed her platelets were up, did another one up again. then i was referred to a heam, she did the jak blood test. when it came up positive she had a bmb to confirm the diagnoses.
the headaches seem to come in 'clusters' she could be fine for 6months then have a couple of weeks where she's in bed vomiting they are so severe. she had a CT scan to rule out anything else.
i think she was born with ET, my haem has requested a copy of her 'heel prick' card from birth to check it out.
Thanks for that. I think I will speak to my GP then.
I am sorry I can't offer any help. It must be very rare to be diagnosed at such a young age or is it just that GP's are just becoming more vigilant ?
Hi Kentuckyrain. . i am sorry to see that your young daughter has been diagnosed with ET and it isnt nice to watch your child suffering when she is unwell. Like rubyruby I am an adult and have Primary Myelofibrosis which I have had to research into. I must stress I am not medically qualified so can only give you my opinion which is that I would try to stop fretting about your daughter going on to develop MF in the future because it might never happen and research into Myeloproliferative Neoplasms is bringing results so new treatments will be available to her in her lifetime. Also like many of us I have been on Hydroxycarbamide tabs for years and it says on the leaflet in the packet that their usage could be the potential cause of developing Acute Myeloid Leukemia. Im sure this will be one of the areas that future research will confirm or deny. I happen to think its likely they could do but not everyone goes on to develop it.
So i know its easy for me to say rather than you as a concerned parent -I am a dad but he's 24- to do but I would try to find ways to leave your concerns about the future for the future and enjoy family life as best you can living, coping and treating ET as it affects you now. There is plenty of good advice about diet etc which might help with the migraine. I used to get them for ten yrs and took Imigran/Sumatripan i think but they dont suit all sufferers. Im sorry if this sounds a tad patronising it isnt meant to be because when you have kids you should never stop worrying over them. Im sure it would help you if you could find another family in similar position so you could share your concerns and this forum is a good place to do it. Cheerz for now.
Hi kentuckyrain I also have ET they say it's not hereditary but my mum has a cousin that has it and now my little cousin who is only 4 yrs old has got it they found out because she was coming out in all these bruises so when they took her to hospital they sent her to a heam so she was diagnosed with either ET or PV and has to attend every 3 months to get her bloods checked but her mum was told not to worry to much as there is so much research being done she'll be fine and live a normal life she also gets an itch and gets cream for it and she gets tried very easy so try not to worry to much all the very best and god bless millions xxxx
